Being friends with a special needs mom: 10 ways to encourage & support
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It was the summer of 2010 and I and my two best online friends, Kathryn and Sara were expecting our little boys. We had met on Christian Military Wives and were all due within a 2 month time-span. We shared pregnancy photos and excitement at the birth of our precious boys. We had a lot in common – our boys, difficult birth experiences, and trouble breastfeeding.
But, in time, it became apparent that God had different paths for us to walk.
As our boys now approach their third birthdays, we still have a lot in common. But now my closest friends spend their days taking their boys (who have both been diagnosed with autism spectrum disorders) to special therapies so that they can learn to talk and eat–while I take my son to play dates, listen to him sing his ABCs, and watch him wolf down food like it’s nothing.
Over the last few years we have all struggled with this thing called motherhood, but Kathryn and Sara have also had to adjust to the life of a “special needs mom.”
As their friend, it’s been hard to know how to help. What to say, what not to say. How to encourage them. How to embrace the gift that God has given me and rejoice in my healthy, neurotypical* son while not undermining the struggles that they go through on a daily basis.
I know I haven’t been a perfect friend. And I’ve probably made a lot of mistakes. But they are gracious and our friendships have endured even the worst of my blunders.
This post is a compilation of advice that I’ve received from my friends, from posts on their blogs, and some things I’ve learned the hard way. While some of it is autism/sensory processing disorder specific (because that is what I have been exposed to the most), I hope that this will encourage women who are friends with special needs moms of all varieties.
How to be friends with a special needs mom
10 ways to encourage a special needs mom (when you aren’t one)
1. Express that you care – that you care about her as a person, as a fellow mom who is just like you. That you care about her child and the special needs that her child has. Ask her regularly how she is doing, and in a way that she knows that you really mean it. Listen and let her know that it’s okay for her to vent, even if you don’t fully understand what she is going through.
2. Don’t forget that she’s a mom and a woman – just like you are. While she may sound like she’s speaking an alien language sometimes and spend her days running between doctors offices and therapy appointments, she still has the whole struggle of normal motherhood going on – the diapers, the laundry, the grocery shopping, the taking care of her husband. Treat her like a normal mom, not some freak of nature.
3. Include her AND her special needs child. Invite them to playdates and birthday parties. Take her out for coffee and invite her to your girls’ outings. Sit with them at church. I know it may be awkward. You might not know what to do or say. Your children may not know how to act around her child. (And her child may not know how to act around yours.) You may have to sit down with your children and talk to them about her child’s special needs. Warn them about potential behaviors that they might expect or might consider to be mean. (Children with autism or sensory disorders may hit or push because they are seeking stimulation, not because they are being mean.)
It might be stressful. You and your children will probably make “mistakes” when interacting with her special needs child. But you will never learn how to act around them unless you try. And I promise you, that taking the time to do so will mean so much to them that they will be much more understanding of your mistakes than if you had kept your distance.
Related: 5 Practical Tips for Successful (and Joyful!) Playdates with a Special Needs Child
4. Ask her questions. You will probably never fully understand her life, but at least try to show an interest in what she goes through on a daily basis. Try to understand her child’s diagnosis or special need, and what it means for their lifestyle. You may ask a dumb question, but, again, trying to understand and floundering a little will probably mean more to her than if you had pretended that there were no special needs or kept your distance.
5. Learn her language. She might speak in acronyms like IEP, ABA, ASD, and SPD. Ask her what they mean – or Google them (like I just had to do with ABA because I forgot what it meant…)
You don’t have to be a special needs parent to learn a little bit about special needs.
“You don’t have to be a special needs mom to learn about special needs.” read more here: https://t.co/Fj1r3byZ6n
— Aprille (@beautyinhistime) December 15, 2017
6. Keep advice to yourself. This is probably where people make some of the most hurtful comments to a special-needs mom. By offering unwarranted and sometimes uneducated or simply irrelevant advice. Most of these moms have spent HOURS if not days of their life researching their child’s diagnosis and treatment options. So the chances of you coming up with some new thing they have never heard of and that actually might work for their child is pretty slim.
(I know…I know…your pastor’s wife’s cousin’s son has autism and is on a gluten free diet and it’s working for him. But that’s him, not your friend’s son. She’s probably aware of that option, has looked into it, has talked it over with her doctors, and decided to take another route. Now if you bring it up, she feels like she has to explain away why it’s not something she is doing and may feel badly when you don’t understand.)
Trust that she is the best mom for her special needs child that she can be and has her child’s best interests in mind – and she just might know a thing or two more about her child than you do.
7. Don’t invalidate or downplay her hardship by saying “oh, my child does that too.” Maybe your child does throw a fit at dinner or hate to put on shoes or wear bandaids.
Kathryn says this about the subject: “…most of the time anything that might be normal for someone is else is far far worse for an autistic child. When people say stuff like that I guess I feel like they don’t think my child is autistic or that my claims are valid.”
Remember that while her frustration of the day (whether it’s giving her special-needs child a haircut or watching him have a melt-down at Chick Fil A) may be similar to what you have gone through with your child, it is one thing in a whole lineup of difficulties that go along with having a special-needs child. Therefore, it is not the same.
8. Refuse to compare your child’s development to hers. When she announces that her child finally said a sentence, or went potty, or started walking – and your child did it 10 months ago – keep. your. mouth. shut. and simply rejoice with her. These things were huge deals for you when they happened, but they are even bigger deals to moms of a special needs child! Their child has overcome huge obstacles to get to that point that your child never had to overcome.
When it comes to your special needs mom friends, simply “Rejoice with them that do rejoice, and weep with them that weep.”
9. Offer tangible help. Offer to babysit and ask the questions or get the education needed to know how to babysit her child. (Sara has trouble finding a sitter because most people don’t know how to use a feeding tube and won’t take the time to learn.) Offer to take her a meal. Come over and help her clean or catch up on laundry. Pick her up some groceries.
This sort of help is hard if you are separated from your friend by a distance. Consider sending your long-distance special needs mom friend a care package with her favorite candy, a good book, maybe a cute outfit for her special-needs child, gift cards, or money. Often families of a special needs child are under a huge financial strain as they try to provide the best care and therapies for their child that they can. They don’t have a lot left over for extras like Starbucks, eating out, or new clothes.
10. Pray for her and her child. Pray for healing for her child or improvement in her child’s functions and behavior. Pray that God would bring friends into her life who understand her life so that she wouldn’t be lonely. Pray for her marriage as it is probably going through far more strain that you could ever know. Pray for her to have strength and grace to get through each long, exhausting, difficult day.
“What I want other Moms of normal kids to know, more than anything, is this: that yes, it is HARD, hard hard, when your kid is different, and to pretend it is not hard is a lie. But, at the same time, that we WANT to be included, involved, accepted, and to make life as normal as possible for our children, even if we’re not sure ourselves how the day is going to go!”
– Sara Fleming –
So what about you? Are you a special needs mom or good friends with one? What else would you add to this list? What have you learned and how do you encourage your friends who are special needs moms? Sound off in the comments!
Download a FREE printable version of this post here!
Related posts:
10 Questions That are ok to Ask Autism Parents
The Power of Friendship: 5 Ways to Help a Special Needs Mom
447 Comments
J. B.
Aprille, I’m thoroughly impressed with this compassionate and “spot on” post. Bravo! I hope it goes viral!
Aprille
Thank you for your encouragement. I really felt like this message needed to go out!
Doggie Daze
Thank you for this post. It reminded me how much i appreciate my brother and how much my stepmother sacrificed in raising him. I grew up in a military household with a biological brother, a father in the service, a stepmother, and the greatest stepbrother I could have ever hoped for. He is hilarious, talkative, outgoing, friendly to everyone, playful, almost always smiling, has the kindest heart of anyone I have ever known, judges no one, and loves to play hide and seek. My brother is in his 30s now but you would never know it. He plays with fisher price and water bottles and dishtowels socks and anything else that makes noise. Most times he will just walk around the house walking and clapping. He’s a joy to be around and I wouldn’t trade my time with him for anything in the world.
Being his little sister taught me a lot about responsibility and understanding special needs children. Aaron is mentally retarded among a slew of other diagnosis. He has seizures on a daily basis and his development is frozen in time. Mentally he is only a couple months old and no amount of medicine or brain surgery that he has undergone has changed any of that. He has to be fed, have his diapers changed throughout the day, and watched at all times. Often growing up I was left home alone to care for my brother until my stepmother and father and other brother all got home from work. Being 12 years old and changing a grown mans diaper and having to catch 5’10″ 200 lbs from falling and busting his head 5-6 times a day will open your eyes to this silenced world of special needs children. One thing that always hurt me was inviting my friends over to the house and them not understanding or even being scared of my big brother. There is a gross lack of education and sensitivity in our society in regards to special needs. I grew up loving him and looking up to his always optimistic personality. He responds to very few words and at best can make noises that almost sound like a word. He will never be able to hold a conversation, or get married, or get a job but he is honestly the most amazing man iv ever met. He taught me how to always have a positive outlook on life, to love everyone, and to enjoy life, have fun, and make the most of every situation. All without ever saying a word.
Aprille
Thank you for sharing your story! How eye-opening!
Anonymous
Thank you! And thanks for sharing your story!!! I feel so blessed to have him in my life. I wish schools and society and general worked harder to teach others, especially other children, about special needs children and the challenges they face and what we can do as a community to help.
Gabrielle
Such a great post! I’ll be pinning this and sharing it because I think more moms need to read it. I have 3 kids, 4, 2, and 10 months. A dear friend also has a 4 year old, and we’ve known each other since long before we had kids. Our 4 year olds are buddies, but her child has SPD, so we’ve gotten familiar with this disorder. I know I’ve made so many of these mistakes, but I’m learning how to be a good friend to her. And meanwhile, my 2 year old has a peanut allergy. She has gone above and beyond to learn how to handle it and she’s always careful to bring safe foods over for him. Good friends are hard to find, so they’re always worth keeping.
Aprille
Gabrielle thank you so much for sharing your experience. I’m glad that you have friends like this, as do I! I felt like this was a topic that people needed to read, especially as the statistics for autism and SPD are rising. The likelihood of moms at least knowing of another mom who is parenting a special-needs child are high! I too have a son with food allergies (and myself have a ton of food allergies). While food allergies maybe isn’t quite as exhausting as some other special needs, it is a different lifestyle so I am always appreciative when people take the time to understand or go out of their way to accomodate my needs! Once again, thanks for sharing!
Considerer
I am (sadly) neither a mum, nor a friend to a special needs mum, but I loved the beauty of your post, the frankness with which it was written and the use it may prove one day. Thank you 🙂
Rachel R.
I’m not a special needs mom, but we have lots of precious special needs friends. From what I can tell, your post is spot-on – and I think that people can forget that, at the heart of it, it’s really as simple as LOVE THEM (mama and child), and accept them as they are. Truly, love covers a multitude of sins. The blunders we will inevitably make are likely to be overlooked if it’s obvious that we care and our intentions were good. And, often, the love and acceptance will make the right thing to do obvious.
We have a young friend who pulls hair. I mean, REALLY pulls hair. (Clarification, in case it’s not obvious from the context of the post: it’s a developmental sort of thing, not an obnoxious-child behavioral type issue.) Our own kids have learned to yell so someone can come help release the grip (we actually had to teach them this, because they’d just stand there and NOT get any help!) – but then they just go about their business as though nothing happened. It’s just part of life with our young friend, and we don’t think anything of it.
Another little guy makes lots of noise in church sometimes. Just the fact that no one looks askance at them for it makes a HUGE difference to his mama. (I know, because she’s said so.)
These things are not complicated. They don’t take much. Just loving our friends and accepting them as they are.
Aprille
Rachel, Thank you so much for sharing your perspective as another non-special needs mom!
Linda P.
Great Post Aprille! I know I have fallen into this area of not knowing what to do. This is so helpful and beautifully written!
Aprille
Thank you Linda!
Christina @ Keeping Home
Good to know!
Kalley C
This is a great list Aprille! This is really sound advice when you’re close to a family who is going through this struggle. Any little bit of compassion–not pity–will work wonders.
motherofchaos3
Reblogged this on and commented:
I think this is a amazing article. I know as a mom with special needs kids I even have a hard time knowing what or how to comfort another mom with special needs kids.
motherofchaos3
I rebloged this at our blog on http://www.chaosorganized25.wordpress.com. As a mom with special needs kids I have a hard time myself knowing how to comfort other moms with special needs kids. Great article.
Aprille
Thanks for reblogging!
Deborah Lea Reed Krug
Best article ever! high praise if I do say so myself…a mom of two with special needs who are now 22 & 24! I hope folks read it….it needs to go viral ….lifechanging for any family who has a friend with a special needs child.
Aprille
Thank you so much for your encouragement and for sharing!
Kathy Sue
As a teacher of students who experience special needs, I would add one more–offer to go with parents to an IEP meeting. An extra listener is so helpful, as parents hear what is said through their emotional filter, and teachers sometimes speak their own language. I try really hard not to do that, but sometimes I do. An extra listener can ask questions, take notes, and clarify. Parents have a right to bring anyone they please to the meeting.
Aprille
This is fabulous advice! I know that both of my friends were very nervous about their IEP meetings and could have benefited from that sort of help! We are separated by so much distance, and it’s stuff like this I wish I could do more of!
thebalconysmoker
As a parent of two special needs children, I would be extremely weirded out and annoyed if a friend asked to tag along to my daughter’s IEP. I have no problem sharing the basics with my friends about my kid’s medical conditions….but we go into such depth about medical history, educational planning and behavioral issues that I am really uncomfortable sharing that with anybody who doesn’t need to know. To me, that’s akin to a friend asking if they can go to a medical appointment for your kid. It isn’t any of their business and kind of awkward socially to request. It’s another thing entirely if someone invites you, but to ask if you can go is just bizarre and uncomfortable.
Aprille
Thank you for sharing your perspective! I think that depends on the mom and the relationship she has with her friend – but I’ve never been in those shoes so definitely can’t speak to what I would prefer!
Kathy Sue Justus
The key word here is offer. As in, “would it be helpful if?” Everyone is different in their openness and need for support. I have had people offer to go to the doctor with me, and taken them up on it. I certainly respect both parents who are very private and those who bring along extra supports. Some parents want support, but don’t know how to ask.
Tyler
As a mom that just went through my first IEP meeting in June I think this is fantastic advice! Thankfully I had a wonderful service coordinator from the Child Development Services Agency that was there for me th whole time. She understood the lingo and heard the things I didn’t hear.
Bobbi Bradley
Try not to say, “except for the grace of God there go I.” That says to parents of children/adults with special needs that the Grace of God was not there for them. Also try not to say, “I’m so thankful that God blessed me with my children and they are healthy and fine.” That says to a parent of a child/adult with special needs that they are not blessed. Both of these comments have been said innocently to me but I have felt the pain. I understand what they are saying but want them to understand what I am feeling. I am blessed and my sons give me a lot of joy.
Aprille
Thanks for that perspective Bobbi! I think I’ve even said things like that before so it’s great to know the feelings that such language brings up for special needs moms!
Lisa B
Bobbi, this is also something that I struggle with. Thank you for bringing it up.
Jen
As a mom of a child with ASD, SPD, Epilepsy, & TSC (Tuberous Sclerosis Complex), I thank you for having a heart for your friends that helped you to realize the importance of friendship. Those friends that so many take for granted in every day life aren’t always available to parents of special needs children. I think often it is just fear of not knowing how that often prevents many from trying. Although ASD and SPD and others are more common these days, it is SO easy to feel so alone and that even your close family doesn’t have a clue! God bless you for being that friend that many parents need. And thank you for encouraging others to do the same. In Christ, Jen
Anita
Excellent advice! I’ll be sharing…
IThoughtIKnewMama (@IThoughtIKnewMa)
Thank you for writing such an important post! As a former special needs teacher, I know how important all of your suggestions are.
Thank you also for linking up at The Tuesday Baby Link Up! I will be featuring your post tomorrow!
Aprille
Thank you for featuring!
Sarah
I am a special needs mom to a 7 year old son with autism. He has gone from being completely non-verbal with excessively severe behavior to high-functioning, verbal, mainstreamed in school (with aids and special programs a couple times a week), and although behavior has improved, it is still a daily struggle. I have no local special needs mom friends, despite trying to connect. They are all long-distance in various states, so we encourage each other online.
This is a great list, but I would also add, especially for Christian friends trying to encourage each other in the faith, telling me that “all things work together for good” does NOT help. It’s trite and cliche. And I already know that. What I am going through is something that I do NOT want to go through, and even if and when I find the blessings of raising my son, there are reminders around every corner all day long that our life is different than what I anticipated, it’s hard, and I just want to feel like we are a “normal” family.
I would also add that you don’t need to try to come up with some awesomely encouraging words. Just be with me and let me be me. I’m not completely different than I was before I had this child. I’m still me. If I’m venting, just listen to me and tell me you love me. Please don’t tell me you can’t imagine what I’m going through as you try to sympathize with me – that puts more distance between me and the “normal” world.
Please don’t keep asking me to search for local support groups. Chances are if your friend hasn’t found people to connect with yet (unless diagnosis JUST happened), they have tried and are in the same place where I am. It’s hard to find friends who are not only raising a special needs child who can personally relate to me, but who also have the same Christian perspective as I do. Faith makes ALL the difference.
Thanks so much for this post. It is so encouraging to see others who care enough to even make a list and share it. I am sure it will be very helpful to those who read it!!
Aprille
Wow thank you so much for sharing your perspective and adding to my list. I know I’ve been guilty of saying that “I can’t even imagine” and hadn’t thought about how that might alienate my friends! Wonderful stuff here!
kathrynann24
Yes, yes, and yes to Sarah’s post! I had a friend tell me I was in self-pity after I got my son’s diagnosis. I was in a period of GRIEF. It hurt really bad that she said that. I also get the “God never gives you more than you can handle.” and that hurts a lot too.
Andrea
What a great post full of lots of excellent tips!
Anonymous
As a single mom of a son with an ASD and sensory processing disorder, you have really made my day with this! Thank you so much for discussing this topic which seems to be so uncomfortable to people who don’t understand.
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TLS
Wow! Any special needs mom that has a friend like you is truly blessed.
Amanda L
Thank you for this post!!!! I am a special needs mom. My daughter Andie is 4 and a half and she has CP (cerebral palsy) she doesn’t talk, walk or feed herself and all of her foods has to be pureed She is a very smart little girl and a lot of people treat her like she is dumb because she can’t speak but she has known her alphabet, numbers and colors since she was 2 so we are very proud of her. One of my biggest things I have problems with are people staring I know she is different and people are curious but some have a look of disgust and that bothers me. I have had to tell people she isn’t contagious so they would sit close to us.
I like when we go somewhere and someone smiles at us that makes me and her feel better. And its amazing what a simple smile can do. If I get to go to the store by myself and I see a special kid and mommy I always smile it brings a little joy to them for a second.
Thank you again for writing this I will for sure share it.
Aprille
Amanda, I’m so sorry you have had to go through that with people giving you looks of disgust. That just shouldn’t happen! I’m glad you found this post and thank you for sharing your experiences with us.
Amanda L
The looks are mainly if she is drooling sometimes she does and people find it disgusting. And its not like she soaks her shirt or anything People can be cruel. But I want to say thank you again for posting this and all the responses are wonderful and I agree with them on their points they have made. Expecially Sarahs she made a lot of good points.
Aprille
So if a baby drools it’s cute, but if it’s a 4 year old with CP it’s disgusting? Sad IMO.
Amanda L
Exactly.
April
I can relate to your experiences myself, I am also a special needs mom of a 2 1/2 year old little boy named Isaiah. Isaiah was born with a rare chromosome abnormality, he also has CP and Pierre Robin Syndrome, and I get those same looks of disgust. I also get people pulling there children away from mine, like they are going to catch something. I just don’t understand it. Your little Andie sounds precious.
Lena Emo
I enjoyed this post, I have a special needs child and sometimes my friends don’t know what to say. All I need some days are encouragement, nothing more.
Anonymous
Thanks for posting this. Since we found out 2 1/2 years ago that the baby girl I was carrying at the time had a heart defect and down syndrome – and five surgeries and countless other tests, therapies, etc. later – i struggle with everything you had said here. Some people get it – they just care and are compassionate, accepting and supportive. Others have disappointed us by NOT being there (understandbly not knowing how) or by being callous and cruel. The lesson – we can all be more caring and compassionate knowing that we don’t know the challenges others face. I know your friends appreciate you, and my hope is that many people read this and take it to heart.
Alisa
Great post! You and your two friends are so blessed to have each other. As the mother of a child with special needs, my circle of friends has changed dramatically in the past 4 years. I have lost touch with friends that I thought would always be in my life, but I have also met new friends that I may not have met had our children not brought us together. I will be sharing, thank you!
Manny Penderey
Thank you so much for this post. i need this to educate a few people on how life is for my lad, its a shame they just don’t get it. I would like to add one thing, don’t look at every child who misbehave and assume they are just a ‘naughty child’ I’m fed up of being told my three year old special needs lad needs a good hiding, I often want the whole world to leave me alone as I’m bored of hearing the negative comments they spiel off. I often say if you don’t love my child at their worst then you don’t deserve them at their best. Xx
April
As a mother to a very special little boy, I want to say thank you….you hit the nail on the head. I love my son and would never change him, but I do want others to include both of us, and stop judging us.
Also I wanted to share a poem with you that also helps those who don’t have a special needs child to understand what it is like in our hearts and mind. It is called “Welcome to Holland” by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
Aprille
Thanks so lovely April! Thanks you sharing!
kathrynann24
Wow thanks for sharing that, I love it!
Kris
I am a mommy to two kiddos on the Autism Spectrum and a military wife and I just wanted to say thank you. It’s so common for posts like this to come across as a “my life is harder than yours” rant! Thank you for writing this from the perspective of a friend encouraging others to reach out to their special needs mommy friends. Your story hit home as two of my closest military wives friends (also met online) were pregnant when I was (with our first borns) and myself and one of the others had children on the spectrum, the third has a neurotypical child and she has been a wonderful friend to me. Thank you again for sharing this.
Aprille
Aww that’s so neat how that’s so similar to my story! Amazing!
Sharon
Well written and very helpful thank you! (I’m still trying to decide whether to post it on my wall or not, though) I didn’t take the time to read all of the replies, so maybe someone has already said this, but one thing I struggle with is people not understanding just how much energy it takes to get out with two special needs kids. My kids have invisible special needs (HIGH functioning Autism with a low IQ, and a child with RAD, who appears VERY sweet to everyone else, be spends every moment and every fiber of her energy manipulating and trying to be in charge) — anyway – We homeschool, and other moms are always trying to get us to join in on play-dates, and field trips, etc. It WIPES me OUT to go out more than once a week with these kids. It takes SO much energy, just to get them ‘put together’ enough to get out the door (two matching shoes, clothes that are not dirty/torn, clean bodies, etc)(it’s like having over-sized two-year-olds) So, if your friend who has special needs kids tends to prefer that play dates be at HER house, please understand. She’ doesn’t have anything against your house, it’s just immeasurably easier if people come to her.
Aprille
That’s such a helpful comment. Even with a neurotypical child I have to limit playdates so I’m sure that for a mom with special needs children, wowza you all are my heroes getting out the door at all! 🙂 Thank you for sharing your experiences.
Sharon
By the way, I did end up posting it, thanks for helping me to communicate some ‘sensitive’ things to friends who sometimes just don’t get it.
Aprille
You are welcome!
Ditzah
Sharon, I am a special needs mother/mother of 4 kids ranging from 9-1 year old. I understand the energy zapping outings. I hate the thought process that happens when you look at the calendar for the week and have to psych yourself up for the outings. My biggest struggle was during the 2 years that I was pregnant with my youngest and then nursing for her first year. We would inevitably show up late for events no matter how hard I tried to prep the night before. That is a true let-down when you have totally missed the event that you have spend a lot of mind energy psyching yourself up for!!
For all the other friends to mothers of disabled children, 2 suggestions: 1. On days that you know there is an important events happening, call her and ask how it went (or didn’t). She may need to rejoice that she made it or vent that she didn’t. Getting the emotion out will help her to refocus and have more patience for the kids that day. And 2. Offer to help get the kids out the door for the event. There are some things that anyone can do. I.e. tie shoes, find shoes, assist with picking out clothes, pouring milk on cereal, make sure that teeth and hair are brushed, etc.
Thank you, Aprille, for this post. It helped me remember how I was a helper for a family with a Rhett Syndrome girl when I was in High School. How every little thing I did helped the mother out. I now know how to ask for help when it matters the most.
Aprille
GREAT suggestions!!!
Janet
Beautiful post. My 10-year-old has autism and is non-verbal. One thing I don’t like to hear from people who are on the fringes of my life is “you are such a good mom”.
Aprille
Can you elaborate on why that bothers you?
ctjtmom62
Thank-you for posting and for being a caring friend who is willing to listen and learn! I think that is the kind of friend all mom’s of kids with special needs would like to have. I have two boys. My oldest is a Type 1 Diabetic.and my youngest has Down Syndrome/Autism/Hearing loss/Hashimotos Disease and Celiac Disease. He is low functioning and non=verbal. Because of my child’s multiple disabilities…he really is very “unlike” a lot of other children with Down Syndrome alone. A lot of people who find out I have a child with DS will relate to me stories about other children they know with DS and how they are so smart and are fully mainstreamed.and doing algebra or whatever..well my child is almost 15 abd functions on a 2 to 3 year old level and is still not fully potty trained. Also I work in an ABA program for young children on the spectrum..and they are all so vastly different..even though they have some similarities as part of the spectrum. I would ask people to try to remember that all people are very diffierent..and all people that have a disability are VERY different and they can function at vastly different levels..and they all have their own distinct personalities.Please do not “generalize” when talking to another special needs parent and tell them you know what their child is like because you met another person with that disability before.
Aprille
That is fabulous advice. I know this post lacks a lot because I’ve really only been exposed to pretty high-functioning autism and SPD, so I’m very thankful for those with children with other disabilities and special need chiming in on the discussion! Thank you so much for sharing your perspective!!!
ctjtmom62
Oh Aprille_I hope my comment did not come across as you doing this..I was just meaning it to be a suggestion to others…..just a reminder to learn an listen about your friend or family members child..without generalizing because of their disability.
Aprille
Oh no I didn’t take it that way at all! I just wish I had more experience with other disabilities is all because I do know that the scope of this post is limited!
Anonymous
wonderful-love this post Aprille. Would love to share it on our DSAJ FB Page-would that be OK?
Aprille
That would be fine! What is DSAJ?
Karen
Down Syndrome ASsociation of Jacksonville. Thanks!
Aprille
Awesome! For sure!
Cristy
Thank you for this…I am a special needs mom. I would only add that I wish I had friends that lived close that would actually DO what they SAY they are going to do. Because I have probably planned around, or depended on the belief that they will actually DO what they SAID they would do. It would be so much better if they had just said they couldn’t or better yet never said they would. I rarely ask for help, but when it’s offered…It’s like winning the lottery!!! (Especially Single Special Needs Moms) then when our friends flake on us…it’s so heartbreaking. Because nothing in our world happens without careful planning, hard work, and a ton of coordinated circumstances. It just always hits me like a brick wall – this is my reality…not theirs. They will never come close to wrapping their mind around what we go through day after day. It’s a lonely place to be.
Aprille
I’m so sorry that you have had to go through that! I hope that you find some more dependable friends soon!
Heather
One of my pet peeves is when someone discovers my son’s autism, all is said is, “oh, sorry”
Aprille
🙁
Can you give an example of what kind of response you would prefer? (For discussion sake. I really truly want to know!)
Heather
I can only think to the positive when it comes to my son’s diagnosis. Instead of oh, sorry..maybe how are you doing? How is he progressing?
He has come a long way in 3 years since his diagnosis, and am proud of him 🙂
Aprille
Thank you so much for explaining better things to say!
Renee Nichols Prewett
Yes! Oh sorry is what should be said when your grandma dies! Another suggestion, simply say “Oh wow, can you tell me more about it”. I know I said this in my other post, but I do have people ask me “Do you mind me asking what her diagnosis is” or something similar. I tell them in more depth than they probably care to know, but it gives them lots of things to ask questions about and they get excited to learn. As the parent, it makes me feel like they care enough to want to know more =)
Aprille
Thanks so much for sharing!
jim w
I am a Mr mom for a boy who has down syndrome legally blind and is very limited verbally. I just want to express that even though a child may not be able to talk well, does not mean that he cannot understand you. There is a huge gap in his receptive language vs his expressive. So he has had to learn to be a master of charades to get his wants across. Or another way to look at it is if you have known someone that has a stroke and lost a little bit of their speech, the words are on their to of their tongue but it just doesn’t come out right until they heal or relearn to speak. It can be very frustrating for someone who can’t express what they are thinking. But he keeps on trying until he gets what he wants. This is one of the best posts that I have read in my ten years of experience. Almost had to graduate from using my finger to a tissue for my eyes.
Aprille
Thank you so much for sharing your experiences, and for your encouragement!!!
Renee Nichols Prewett
Love this post, and I hope many people read this. My special girl is now 19 years old, so we have been through every age level etc. I won’t get into specific diagnosis because there are several, but I will say she functions at a 2-3 year level cognitively, but a 7-8 year socially, and she is very vocal. I do believe this is because we have never treated her differently, and allow her to participate in “normal” things. To other special needs parents, don’t be afraid to let your kids LIVE! They may not know the dance routine perfectly for the recital, but guess what? Those “normal” 3-5 year olds don’t either! They may not learn every word and every move to every cheer, but that is ok, they still enjoy and learn from the experience. My daughter has always been the center of attention at school and has lots of “regular” friends. They have grown up with her and accept here for who she is, and they are happy to include her. BUT, if you keep your child from being included, do not blame society for your child’s lack of interaction. Shelby has been in dance, cheer leading, special needs rodeo and baseball, pageants, powderpuff football at school, the senior pep rally, she had a super sweet 16 party, she walked the stage with the rest of her class a month ago. The possibilities are endless…let. them. live! And as somebody else mentioned, “God never gives you more than you can handle.” is probably the most over used line I have ever heard. Walk a week in my shoes, and then let me know if you feel the same way. Yes, we handle it because we have to, but there are days that my shoulders sure don’t feel as strong as they may appear. Oh, and one last thing… ASK questions. I would much rather you ask me “Why does she do it that way?” “Why does it effect her that way?” That is part of what you mentioned about educating yourself, but don’t be afraid to ask your friend. Be tactful, but be honest rather than being afraid you will hurt their feelings. Keep up the great work to all the “friends w/o special needs kids”, you are the ones that are cherished the most =)
Aprille
Thank you for sharing! Your daughter sounds so amazing!
Renee Nichols Prewett
Thank you, we think so =D She is a mess, that is for sure lol
Sue
You’ve said what I could not put into words so eloquently. You are an amazing person for supporting your friends and spreading the knowledge you’ve learned by being their friend. My son has a feeding tube, born with a congenital heart defect. I know the struggles of finding/trusting a babysitter. Grandparents are all we trust, not that any friends have actually ever offered…
Lydia K.
Thank you. As a special needs mom.
Lydia K.
I hate with such passion the “oh, since shes had surgery shes all better now”. Or the “she doesn’t look special/sick”.
Kelly Bolding
I have a 14 year old special needs child. She is my world. She is developmently delayed in some areas but not. So a lot oe don’t understand how she can get up in front of a group and give an awesome speech, bur then have a meltdown when a friend can’t spend the night.
Your article was awesome. I especially liked #9 and #10. And #4 when people ask questions it make me feel like they care enough to take time to learn.
Tracy M
Well said. There are only a few people around us who really know what this life is really like, and we are committed to the development and empowerment of our children. I am honored that God chose me to get to be their mom- But more people should read this article and try to walk in our shoes sometime- they are tough shoes to fit in!! It is hard work-and I’ll be damned if someone with a “neurotypical” child is going to walk through my door and try to tell me what they think I should be doing with my children. They are happy, healthy, well educated, and have a far more in-depth grasp of true humility and appreciation for diversity than these kids who claim to be “more normal” will likely ever have.
andi9494
Dont complain about things that we maybe jealous of. My son has down syndrome and is 18 months. We are constantly working towards getting him to walk, so when someone who has a kid the same age, complains about how thier kids are climbing all over things or getting into stuff we kind of wish our kids could be doing that stuff. Or complaining about having to take your kid to the doctor when they have a common sickness. That really bothers me just because we have so many therapy and doctor appointments.
Aprille
I think this one is the toughest for me. My hardest days are NOTHING in comparison to everyday life with a special needs child, but my hardest days are still my hardest days for ME. I know it doesn’t come close to what my friends have to deal with, but still sometimes I need the opportunity to vent a little when I’m down. However on those days, I think often of my friends and that’s the boost I need to remind me to count the blessings I have and remember all that my child can do – to be thankful for the fact that okay, so he’s fighting me eating broccoli for the 15th night in a row, but he can eat it, and would down 3 bananas right now if I let him – something my friend’s sons can’t do. It’s all about my perspective, and sometimes I need a swift kick to the pants to remember, which is why I’m thankful I have the friends that I do.
Social media makes it tough. And while I wouldn’t sit in front of my friends in person and be all like, “Man, I just wish Ezra would stop fighting me at dinner every night!!”, I might make an occasional comment on my own personal Facebook page once in a while. I agree, complaining all of the time would be annoying, but, like I said above, I get frustrated with MY life too, and sometimes I want a chance to express that frustration, you know what I mean?
I would never come over to their page though and complain about my kid on their status or photos or whatever. That’s just bad-taste.
I guess what I’m saying is that each mom is going to have their own struggles – and just because someone’s struggle is far worse than mine, that’s not my road to walk, and my struggle is still hard FOR ME in my own right. Each mom should have the right to deal with their struggles in their own way, even if that means complaining occasionally. I hope this makes sense!!
kathrynann24
Well said and understood!
andi9494
I do totally understand about being stressed out with your typical children. I still complain to my friends about things that have to do with my typical daughter or just life in general. I just mean maybe complaining about those kinds of things to other friends, and not the ones who have special needs children. I know for me, this past month my mind has been constantly on trying to figure out what is causing my sons breathing problems. So when someone complains to me about something little like a runny nose it makes me jealous. I wish that could be my biggest problem. But I totally agree that you have the right to complain about things. I was a non-special needs parent once too, so I understand both sides. And also I’m sure that your friends wouldn’t mind if you vented to them every once in awhile, but some people do it all the time and that can get annoying. 🙂
Aprille
There’s definitely a balance on this one!!!
Nicole
I have as son that is almost 5. He has heart problems and a prosthetic leg. I also have a cousin that is almost 5 with Downs Syndrome. It is very hard to deal with. The dr. appointments all the time. Also getting them to learn is very hard. I believe that they should be treated equally. The parents too. I agree with what I read 100 precent. They are people too. They should be loved the same as a normal child. Love them all the same.
Kate
I have 5 kids with special needs. This post is fantastic, in my opinion.
I would add that people should not say, “I don’t know how you do it!” or “God knew you could handle this,” or “I could never do what you do.” Platitudes are annoying & completely unhelpful. They are also ridiculous because of COURSE you (general “you”) could do what mothers of kids with SN do you were in the position to need to do it. Look at your child and imagine him getting in an accident that left him disabled. Would you abandon him or would you do everything possible to take care of him to the best of your ability? That’s obvious, right? Mothers do what we need to do for our children. It’s as simple as that. Telling a mom, “You’re doing a good job,” or “I know it’s been really hard lately and I want you to know that I think you are making great choices for your child,” is a lot more encouraging than platitudes could ever be.
Theresa
Yes Kate that’s perfect and exactly how I feel. I would also add that I detest putting the label before the child. You wouldn’t call yourself a parent of a normal child on a regular basis, you are a parent with a child. As am I. I am a parent of a child with special needs. Her needs do not define who she is and I wish everyone would drop the labels so everyone could embrace and include all children and adults. Thanks!
Anonymous
I have a special needs daughter who is 9 years old. She is on the spectrum. Two things that I like (for me) is when my daughter sings in church (very loudly and with all of her heart) and people tell her how well she sings and they smile at her encouragingly. And I also appreciate it when my friends will do something with me (just me-like when my daughter is with her dad), so I can take a breather from all of the appointments, therapies and the learning and recharge my batteries so I can be a better mom during the week.
Chris
Thank you for this! My Autistic son is 8, and I have especially struggled with remembering to be patient with friends who have neurotypical children.
Allison Perow Clow
Thank you for the great article. I am a special needs mom of twins that both have cerebral palsy.
Yvonne
Great blog post. Your friends are blessed to have you in their life. I have a 3 boys, one with Down syndrome and autism. It is a journey for sure and I have have been blessed with great friends, those that have typical developing children and those that have children with special needs. I think we all have things to learn from each other. Being non-judgmental about each others choices is important to me. Knowing that I can share struggles with my friends and they will just listen, empathize and pray for me is a big help. If I feel negative judgement coming from someone, I have learned that I need to avoid that relationship.
http://georgesnaturalplaytherapy.blogspot.com/
Crystal
This is AMAZING. Thank you for taking the time to put this together. SO many things that I’d say as a mom of a severely autistic 8 year old boy and two younger siblings, but made more relevant in a way because you’re a friend who noticed that these things are true. Your friends are truly blessed… you are a rare treasure and a gift from the Lord!
Anonymous
Sounds like you are an amazing friend, and a lucky one to have. This is awesome! I’m going to share this, I am literally both…the special needs mom and the friend.
Kimberly Sandstrom
As a marriage and family therapist who works with families, this is a beautiful and much needed post! Thank you for gathering the information and making it public…we can all read this and learn! Posting to my professional page!
Aprille
thank you for sharing!
Beth
This is a great post! I have a special needs child. I wish that people would invite my son to birthday parties. Also, when we are at a social event as a family, I need to “hover” to make sure he stays safe. I wish people would be willing to leave the crowd to “hover” with me so that I don’t feel left out.
Jennifer
YES! I agree!
Kristi
I met my best friend when my son had recently been diagnosed, she did not have children at the time. She was there for me the best way that she knew how and I am forever thankful that she did. Now, she is the parent of son with ASD and even though we not longer live near each other I hope that I support her the same way that she did for me. People are meant to be friends for a reason.
Anonymous
Thank you for this post – I am crying mostly because my friends are still trying to ‘get it’ after I adopted my son with Down Syndrome, he is now 6. It is hard for me to help them understand.
meghandickinson
Thank you for this heartfelt post. I shared it immediately. I am the proud mom of 5 amazing children. Our oldest two blessings came by birth, 18 and 12 years ago..The youngest THREE ages 6,7 and 8 were given to us by the gift of international adoption. They all sport a little something extra. They all 3 have an extra copy of the 21 st chromosome , aka Down syndrome. Our family was uniquely created by God. We are BLESSED!
Aprille
Special-need adoption is amazing! God bless you!
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Becky
I am the proud mama of a beautiful daughter with cerebral palsy. This article is amazing! Thank you so much, I found myself agreeing to all of it!
Cat Muir
Thanks for this. I have an intellectually disabled/autistic daughter who I love more than the world, and it’s sometimes tough for people (even my own family) to understand that there are challenges because she looks “normal”. It’s sometimes painful when her sister gets invited places, but she doesn’t (even though, maybe she doesn’t care) I wish she could be included in things more often with peers. I know most of the time it’s the kids choosing the “more fun” kid to invite to parties, but I feel sad for my daughter even when I “understand”.
Sarah
Thank you for this article! You’re spot on! In 2011 our family changed drastically when we adopted Kayleigh, a profoundly mentally and physically disabled daughter from Ethiopia. We are blessed in that, overall, our closest friends have been very supportive and dealt very naturally with our “new normal”. Their children have learned by our other children’s examples to just accept her and welcome her as she is. There are 2 things that I wish others knew about encouraging a special needs mom: Firstly, love my other children and offer support and encouragement to them. Their life now is filled with accompanying us to specialists, therapists, and hospital time. Having an older woman who offered to “surrogate grandparent” our other 3 children would be priceless. They don’t complain, and they do really love their sister, but I am sure that it would be a huge gift to them and to me to sometimes escape from life as a “special needs sibling” and to have someone specifically invest time and attention just in them. Secondly, speak to my daughter! It breaks my heart when I walk through our church foyer and sanctuary and people don’t ever acknowledge that Kayleigh (who is basically non-verbal) exists. Especially difficult is when she reaches for someone’s hand and squeals at them and they don’t acknowledge her. Those people who kneel down to get on her level and speak to her bless me by their kindness, and I know they bless her, too. If you want to love a Mommy, show love to her children.
Team Mac Howard
As a mother who has a 14-month old going through chemotherapy, I can honestly say the prayers, notes, texts, emails, are such an encouragement and keep me (us–our family) going. Some have said, “I know you are probably hearing the same thing from everyone…” so I respond, “but I’m hearing it from you now and that is what matters.” It ALL helps and it never gets old. N-E-V-E-R.” Even if you feel like you are not doing anything, your are. If you get the impulse to reach out, do it…it may be the exact moment that encouragement is needed.
Kathy
Thank you! So well written!
meredith
Thank you from the bottom of my heart for this. I have family and friends who mean well but just don’t get it. (My precious son has autism.)
Ann Louise
This is great. I am a pediatric physical therapist and get to know the families I work with and this is so good. But I am also a foster mother – I think this could totally apply to foster moms too as our kids have significant struggles simply because they are pulled out of their home and because they had to be pulled out of their home.
Lauren Casper
Wonderful post. I have an almost 3 year old son with autism and I agree with every single thing you wrote here. I also have a 1 year old daughter with physical handicaps. I would add that along with including us and inviting us to things, please don’t be hurt if we call and cancel at the last minute. I have to do that often because my son is having a panic attack and I can’t leave the house. I’m always afraid that my friends will be offended or think I don’t love them.
Aprille
That’s really good to know!
1kurtsi1
I wrote an Ebook about my mother, a special needs Mom, “Too Early for Flowers: The Story of a Polio Mother.”
Anonymous
Wonderful post! I have a son with 22q Deletion meaning he is missing a piece of his 22nd Chromosome on the q Arm. There are 188 medical issues related to this genetic abnormality. We spent a LOT of time in the hospital the first years of his life and met wonderful special needs parents along the way. It is hard to express what we go through on a daily basis. This list is helpful!! Thank you for sharing.
Nancy
My daughter has 22q Deletion, too!! You are right, it is VERY overwhelming, especially the first year. She just turned four and is doing fairly well now, but we have lost a lot of friends and even some family who just didn’t get how sick she really was. It is difficult, if not impossible for me to go to Ladie’s Bible study at church, or play dates with my older children’s friends because I have to be home at some point during the week just to manage the normal household chores. Between routine therapy and doctor’s visits, there isn’t much time for “fun” outings. It would be nice if the moms of my children’s friends would invite them over or take them on a play date so they could have fun without missing out all the time because of their sister. That said, they love her dearly and wouldn’t trade life with her for anything! 🙂
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wendy
I am a mother of a child with cerebral palsy and it was always difficult to try to explain ! Actually it has always been easier to explain to children why my child can’t walk or talk than adults. Still friends say that they can’t imagine how I do I ,but never offer to help out sometimes.
Laraba
I have a friend with 2 special needs adopted sweeties. I find myself hesitant to get very involved because I want to be a “good friend” to her while I am super, crazy busy with our 8 kids (none of whom are special needs.) I am not sure if I am saying this right…I don’t want to be one of those tiresome fair weather friends, but reality is I don’t have time to do more than the occasional email. I am not sure how to be a good friend to her when I really don’t have much time. I guess maybe just learning some of the jargon would help…as you said, it is its own language! Thanks for a wonderful post.
Kimberley Bates
I am a special needs mom my son who is 2 has sma spinal muclure athrophy and he looks normal and its hard my friends n family to talk not knowing,what to say or n to say they,just leave us out of social gathering but well written I loved this and will share it thanks
Kim n Tj
Sarah Moore Pollnow
Thanks for the great article. I’m going to save this and figure out how to share it with people I know.
My youngest son has cerebral palsy, and we’re only about 1 1/2 years into our journey. You are sharing Jesus’ message of loving children through this post. God bless you.
Krystal
I just saw this and thank you! Thank you! Thank you! Thank you! I’m a mom of multiple children on the autism spectrum and its not easy – but I’m just a mom too so thank you from the bottom of my heart! My favorite line “You don’t have to be a special needs mom to learn about special needs.” This is so true! Your friends are lucky to have you in their lives.
Kate Spates
Thank you for this post! As a mother of twins with mild/mod cerebral palsy, I have so many great girlfriends who support, but sometimes make these types of mistakes. One of my peeves is when people refer to their child as “normal”. In our house we use the word “typical” to describe average milestones & even kids being typical, because really, what is “normal”. Plenty of “normal” kids have their own challenges. Again, thanks for shedding light. 🙂
Aprille
Thank you so much for sharing this. I have used the term “normal” before in reference to my son (may have even done it in this post) but I really hate using that and always try to put in it quotes at least. Normal is just a setting on the washer right?
Thanks for clarifying that “typical” is a better term!
Jami
Kate, thank you for clarifying that the correct term is typical, and that it refers to average milestones, etc. I have two “typical” older daughters, but they’ve had their own challenges. One of them even had to attend a specialized school for various severe challenges at an early age. She is now 16 and you would never suspect that she had these early struggles. My son is 17 months old and has an extra 21st chromosome (DS), and there are some challenges, but they still haven’t been as challenging as dealing with my oldest “typical” daughter when she was his age.. I agre…what is normal?
Mary Gardner Martin
Reblogged this on iconobaptist and commented:
This is a wonderful post on parenting a special needs child. While I am not in 100% agreement with everything here, I see this approach as very good–listing the do’s and don’t’s of friendship with a special needs family (and we are all different . . .).
Mary Gardner Martin
After I reblogged this, because I found it so wonderful, I thought to put in a comment as the mom of a now-21-year-old son with autism. Wish I had had blogs and FB when my son was young! LOL!
One thing I will add, specifically, and not because it was said wrong in the post, but just because it was not specifically stated (and can be scary to those who don’t know disabilities) . . .
When we talk about special needs kids hitting and pushing because of a need for sensory stimulation, that is individual to each child, too.
Our son was the “little lost lamb” who didn’t hit socially but rather was always being hit by the non-disabled kids in playgroup, Bible study, etc. When I hovered around him, it was to protect him, mostly, as the other moms would tend to gather in the kitchen and have adult conversation while their offspring were hitting my son and each other.
That said, I believe that we need to teach from the youngest age that hitting is not a way for anyone to solve anything. Non-disabled kids need to learn that (and their moms need to pay attention to teaching them); disabled kids need to learn it, too, although the learning curve may be longer. There is a danger that we might accidentally teach our non-disabled kids that they have to just stand there and take it when a disabled child hits or pushes them–that is not the case. They need to come get us so we can teach everyone, including the disabled child, how to relate without violence.
If we don’t get a handle on this when the child is young, we set him up for having to live in an institution when he is older. No one is going to allow an adult with autism to walk around town randomly hitting and pushing other people.
It is a sad thing we must sometimes face (the moms whose children tend toward this behavior). God is enough to help us, in even this hard situation. The earlier the intervention/teaching happens, the better the chance the child will grow up to be a non-violent adult.
Aprille
Thank you so much for your perspective! I am not a special needs mom, but I agree that all children should be taught kindness and gentleness. Children with sensory needs will have a harder time learning and understanding these concepts, so their moms need grace and understanding in the mean time.
ljdsmom
All of this was wonderful advice. As the mother of an autistic child, I have to say #3 is a big one that I struggle with personally. People don’t seem to understand how isolating autism can be. They often assume that I am “too busy” to invite out, include or consider for important roles. Perhaps they think they are doing me a favor but I actually feel excluded and disregarded. It only emphasizes the isolation I already feel. I would rather have the option to say no myself instead of having them assume that I will. This article needs to be shared with everyone that knows someone parenting a special needs child.
Jamie
Love this article! I have a daughter with cerebral palsy, mild but it does present some problems. I think peor don’t realize that it is a special need because it is so mild, but she does have balance issues and is insecure with a lot of gross motor activities. One problem I have encountered is if I say she needs to be careful about certain things like running with groups of kids then I hear her teacher say she CAN’T do the activity and set her in the corner with something quiet to do. It’s frustrating to get the balance. I want caution used but I don’t want her to be secluded and feel like she can’t participate.
I also have a son with moderate hearing loss. With him I mostly get people thinking that now that he has hearing aids he should be able to hear everything so why isn’t he talking with a three year old vocabulary yet? They don’t understand that he spent 2 1/2 years without hearing aids and 2 of those years were in a Spanish speaking country. He has to be able to understand our language before he can use it. I guess it’s just hard when people assume they know everything about your child’s disability.
Rebeca
A friend posted this on fb and I thought what crazy timing! I was out sunning and reading a book in my back yard this afternoon when I heard a child scream “Let go of me!”. I got up, wondering what was going on, thinking it was my immediate neighbor’s child but it was coming from farther away. I saw the house the child was screaming from, I don’t know them at all (they are the next street over and a few house up from us). It didn’t look like trouble but the screaming continued mostly inarticulate except for “let go of me” here and there. I was thinking that these two details could point to some disorder rather than a tantrum like my kids throw. I’m pretty socially uncomfortable and have never talked first where a friendship has been made (in my adult life anyway) and spend very little time with the friends I have (I like to be alone usually) but I found myself wondering if this was the case with their child and thinking about how the parents were feeling. Do the neighbors know them, their child and his needs, do they have family close by, do they have support from friends? I thought how odd it was that I was wondering if or how I could help. I thought about asking advice from a few fb friends and then this was posted. I feel kind of foolish asking, but how would one socially awkward person approach a complete stranger who may or may not have a special needs child?
Aprille
Would love to see some of the other moms chime in here on this one. I’m not sure!
If it were me, I would try to befriend the mom as a fellow mom, whether her child has special needs or not. Maybe invite her kids over a playdate. Maybe what you witnessed was simply a “typical” tantrum, but given more time to observe, you may be able to figure that out on your own. If it becomes obvious to you that the child does have special needs, then you can approach the mom with some of the suggestions mentioned here!
Andrea
I am a mother of a Beautiful Teenage daughter with Autism.
What a lovely considerate post, kept me in tissue’s.
Friends like you are certainly rare to find,
Although I admit I tend to keep myself to myself,
& friends to me are a luxury & I’m not big on treating myself
Kind Regards
Andrea x
Jill S
Thank you! I teach special needs children and interact with their parents frequently. Very helpful.
bedenkops@gmail.com
Oh how I love this. This will crazy bless some amazing moms in my life.
So delighted to meet you. I hope you don’t mind if I splash around a bit to get to know you. This looks like a refreshing place to dip into some serious goodness.
I would love you to share this post! A group of moms gather each week. I usually post on Mondays, but missed it this week. I start jotting a few notes and then others join in. You can post whenever, doesn’t have to be anything new, it can be a gem nestled in your pages. I get the filled to the brim momma schedules.
Just moms. Sharing our notes. Creating a melody.
Be blessed,
Sarah
Aprille
Do you have a link for your linkup?
Laurie
Thank you, thank you, thank you! I could have used this a million times over the past 17+ years. #6 & 7 should be mailed out to every household. I know your children at young but this still holds true for a mom of a teenage child.
Rachel
LOVED this! Thank you SO much for writing it! I’m a mom of a special needs child and I have issues like this with not only friends but also family since he is the first special needs child in both sides of the family! Everyone should read this! And not only if you have a friend of a special needs child, all family members need to read this and also if you just know someone with a special needs child!
Sandy Cooper
Great post! I am an aunt to 2 special needs nephews. I think the suggestion that surprised me here was when you advised not to say, “Oh, my child does that, too.” I would never want to invalidate the moms’ hardships or struggles, by any means. But sometimes I sense my sister, in particular, wants to know that, on some level, other moms are struggling with their kids, too and that not EVERYTHING her son does is developmentally inappropriate. I thought it helped her when I said things like, “My son pulled everything off the tables, too.” or “We went through an entire year where we couldn’t take our kids to a restaurant…I understand that frustration!” I’m not trying to minimize her struggles or suggest that what she deals with is normal–but just trying to relate the best I can and let her know parenting is a challenge and she’s not alone.
Maybe I’m totally putting my foot in my mouth???
Aprille
Sandy, I think there is a balance to this and a lot of it has to do with tone and exactly how it is handled – and perhaps even the mood of the mom. If she has had a really bad day and a lot of it is related to the special needs of her child, then she may find a “oh my kid does that too” comment like salt in the wound and inside may find herself screaming OH YOU JUST HAVE NO CLUE ABOUT MY LIFE. If she is sharing with you just one experience and, developmentally, your child is going through the same thing, then if it’s done empathetically, I don’t think such a comment would be completely inappropriate. I have found myself saying things like this to both of my friends – probably both inappropriately and appropriately so. I think the most important thing, if you choose to say something like that, is to make sure it is done in a way where the mom knows that you aren’t making light of her struggles, but rather trying to be empathetic.
I am not a special-needs mom though so would definitely love some more input on this one!
Sandy Cooper
I agree that making light of her struggles vs. trying to relate so she knows she’s not alone in her frustration over her situation are two different things. I guess that’s what I’m trying to say.
I don’t want to sound insensitive to my sister, by any means. I lost a child when he was 9 mos old and it always upset me when people said things like, “I understand…my dog died and it was terrible.” Losing a dog is nothing like losing a child. So…no.
I think pointing to the things a mother of a special needs child has in common with mothers of “typical” children helps them feel like they aren’t such an anomaly. I don’t know…maybe I’m wrong.
Great discussion, though. This post was very helpful. 🙂
Aprille
You make a good point!!! Thanks for sharing!
Miriam
Spot on, my new friend! Spot on!
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Courtney
I would also say public support is also something that is helpful. The staring eyes of adults makes “special needs” moms stress and really feel alone in the world. As a friend you can model supportive behavior for the rest of the world. This support will look different with each person address this with your friend so address this with her before the first meltdown or glare occurs! Thank you for this.
Katie Emanuel
Absolutely love this! I am the mother of a child with Autism and your beautiful words are spot on. I have shared this post with friends and family, and included it in the resources for encouragement section of our blog, wonderfully-made.net, where we share the many gifts of our amazing son and our journey as a family navigating the waters of Autism. Many thanks for this excellent work and God bless!
Aprille
You are so welcome. And thank you for featuring this post on your site!
Matt
These are also applicable to the Special Needs Dads. They do exist, I have actually seen one in the wild.
Aprille
Matt, I assure you that no slight towards Special Needs Dads was intended. I have a primarily female readership and was simply speaking to the people I know would benefit from the information. Certainly these things apply to all special needs parents and I hope that the reader can infer that without taking my focus on Special Needs Moms as a personal exclusion against fathers of special-needs children.
Rose
Imagine how we adults feel? They still ask dumb questions. it doesn’t cease in adulthood. Maybe special needs parents should learn to stop using adults as to peer into what awaits their kids. Please use new parlance. it is Neurotypical : not normal. Nobody wants to be abnormal. Difference is okay.
Alexandra
I would add don’t give up on us. We may turn down your invites for months because our child just can’t go out and we can’t leave them but eventually, maybe the very next time time you ask, the stars will align and we will be able to get away for 45 minutes for that cup of coffee, or pedicure or finally make a playdate. Keep asking, keep offering. It means a lot even if we have to say no 99% of the time.
Aprille
Great advice! Thanks for sharing!
Jaana
Thank you!!!!!! #7 hit closest to home for me. The whole article is great. My son has special needs and I will also use this advice with other special needs moms that I know.
nicole
My son has a deferred autism diagnosis, but a 100% adhd combined type diagnosis, with impulse control problems, and behavioral issues. I have never met another child like him. He is wondrrful and amazing. But my biggest peeve is random people telling me their stories of how their kid “does that too” and how “normal” he seems. I know adhd doesnt typically fall into the special needs category, but ive never seen adhd so bad either. Everyday is a struggle with him. I wouldnt change him for the world (maybe the aggresion he has, but thats it :b. ). Hes also the sweetest big brother to his baby sister <3. Love my little big man! Your blog post has definately hit home. I dont even keep tight knit friends cause they dont really understand how tough it truely is, and most make me feel worse, like i havent been doing this for 6 years and KNOW what im doing…..
Aprille
Nicole, I’m so sorry you have had such a tough time keeping tight friends. It is my hope that this post would bring awareness to these issues and make it easier for moms like you to have people in your life that understand – or at least empathize – with what you go through.
Elisha Hannafey DeMaria
Thank you.
I’m a special needs mom & this is a great article. Particularly #3… We’ve just seen at the least, two birthday parties my son was.not.invited to & it’s heart-breaking that people are so mean especially when they give the pretense of compassion.
3. Include her AND her special needs child. Invite them to playdates and birthday parties
Plus we never use the word “normal”… it’s “regular acting child” because my boy who.happens.to.have.autism is NORMAL & wonderful.
Aprille
This is something I learned through writing this post. I just went back and edited my words to reflect “neuro-typical” instead of “normal.”
Elisha Hannafey DeMaria
Thank YOU, Thank you so much <3
missusdunlap
1. DO NOT come up to her after church and tell her that her Special Needs Child is “totally out-of-control” because she could not sit still and be quiet for an hour. This is most especially true if you have NO children of your own, and therefore not the slightest clue. 🙂
2. Do not repeatedly tell her child that she is “bad” because she can’t calm down.
3. Do not ask how she is and when she starts to respond with a tale of epic stress, confusion, scheduling nightmares, new diagnoses, etc., interrupt with a comment such as: “We all have stress.” Well, no you don’t have the same kind of stress I do and you never will and you have no clue.
4. Don’t dismiss what she’s going through by saying that you’ll keep her in your prayers – and then make absolutely no effort to care or listen, ask questions, or ease her burdens. Or just call every once in a while and see how she’s doing.
This is absolutely perfect and spot-on. Thank you for being the wonderful, understanding friend that I so desperately need and wish I had in my life. No one “gets” what it’s like to have a Special Needs Child except other parents with Special Needs Kids.
Aprille
MissDunlap: I’m so sorry that you have had these experiences. I hope that over time awareness for special-needs parenting will be raised so people don’t have to go through such heartbreaking experiences.
David C
Bless you! Im a special needs Dad and I have witnessed alot. Your story was well written and very accurate as to what anyone can do or say. I think because the subject is emotionally big, people just freeze and just dont know what to do.
Momma
Thank you so much for writing this post. I’m a single mom of my 12 year old son who has high functioning Aspberger’s, PTSD, anxiety and other conditions. We have also walked the road of being with other neuro-typical families and their kids over those twelve years, and I’d like to offer some advice from someone who’s been there. Firs, though, let me throw out a caveat that my son’s situation is a little different: he is mostly recovered from his AUAspie tendencies thanks to a ton of hard work on everyone’s part and finding out that the medicines he was on were causing the vast majority of his symptoms. We also learned that there were medical conditions that were mimicking his AU symptoms (Restless Legs Syndrome and low Vitamin D [i.e. we fixed those two things and 99% of his stemming stopped]). The medicines he was on also caused Tardive Dyskinesia (drug induced Parkinson’s) so….I would strongly caution your friends to pay attention to drug interactions, baseline labs, and how long they have been on meds (and which: Abilify; Risperdal and Serequel are the worst). I’m also (mostly) speaking to parentsfriends of high functioning AU kids. With that said……
First, I would emphatically say be careful how (and how often) you talk about your kids’ AU friend and hisher condition. As the kids (I’ll say kids inclusively, meaning the group we run with) aged those admonitions and discussions came back to bite us in the butt. Kids have a natural tendency to a pecking order and they’re masters at sniffing out weaknesses. As they get older, all those conversations about “what’s wrong with John” and “he’s just different and we need to accept him” often translates into making John the whipping boy….the red shirt in Star Trek play….”you’re the slave and I’m the master”…..it sticks a huge “there’s something wrong with you” sticker on his head that is very hard to get off. It puts in their head that there’s a distance between the kids that can’t be crossed. Oh….you’ll tell yourself “Why, I have the sweetest son in the world…he would never treat John like that.” Yes, my friend. He will..And he should, because that’s what happens in the neuro-typical world. This is what happens when parents are not around.
May I suggest, instead, that you just treat John with patience and understanding….like he’s really no different from any one else. Model that for your kids. I’m an elementary teacher and having an Aspie kid has totally changed the way I teach (and approach AU kids in my classroom). Years ago I decided to take that exact same approach in my classroom (and we had several low functioning AU kids in our school). I modeled pure acceptance and no grandiose explanations…other than the basics: “I have a son who has a very high level of Autism called Aspberger’s. It makes sounds, transitions and crowds confusing for him. He has *so* much to say…but sometimes it comes out all wrong. But if you just took a minute to get to know him, you’ll see what a really amazing perspective he has on the world.” And then…..I model it. Over time, I’ve noticed that my our AU kids were accepted way quicker and with no extra ammunition for a pecking order. Hold your AU friends’ kid to the same level of intelligence *and* high expectations you’ll be surprised how they live up to that expectation.
Also be careful of saying the same things to *your* AU (or friends’) kid (or to your friends that *heshe* can overhear)…that he’s different; has a problem; can’t do something because he’s AU; had a meltdown because he’s Autistic….they’re listening, and that can be an excuse for learned (bad) behavior. I’ve seen that over and over in my classroom as well….students with autism who *can* function heard that they have a problem and they can turn it on and off like a faucet. Believe me: an experienced teacher and tell the difference between a true meltdown (and can usually see the escalation triggers a mile away and can prevent it) versus a pretend meltdown. And yes…I could write another ten paragraphs (heh which I’m not – don’t worry) on education and the AU kid from the parent’s and teacher’s perspective. All I’ll say is….polite and honest communication early and often on both sides solves a lot of problems. And before you yell at the Principal, do your best to talk to the teacher first. If heshe doesn’t get it, then start climbing up the ladder (and believe me, after doing my best to work it out [and with a good cause like not implementing his IEP]) I *did* climb way up the ladder with excellent documentation.
Lastly, kids with Aspberger’sAU have the most amazing perspective on the world. If you’re such a parent, you’re nodding your head. We are the privileged few that are blessed to witness an unfolding miracle. I often call my kiddo the 150 watt light bulb in a 50 watt world. He just shines a little brighter. Unfortunately, the world really doesn’t understand that brightness. My kiddo has real trouble making and keeping friends. He spends a great deal of his time being ridiculed (and yes…he brings a great deal of that on himself thanks to his social skills issues). Fortunately, the kid is resilient to the extreme. May I suggest that you make your home a safe harbor.for him. Fill him back up with love and patient understanding (while at the same time holding him absolutely accountable for his actions and having high expectations). My kiddo knows that he is loved and cared for by many people. That goes a long way, in my humble opinion, to combating a ton of middle school tribulations typically (and which are magnified with an Apsie kid).
And get read for your kiddo to be Michigan J. Frog. You know….that Buggs Bunny Cartoon where the amazingly talented frog that sang and danced for the construction worker clammed up the minute he tried to show anyone. Prepare yourself for having these **amazingly** deep conversations with your Aspie kid in the car that you’ll wish you had tape recorded…and the minute you open the door and walk into a room he can’t string together a coherent sentence. He’s like the frog behind the curtain: “everybody loves the Michigan Raaaaag!” The curtain opens and “broak.” Nada. You’ll want to pull your hair out and scream. Please understand (like I am learning to understand) that it’s not about you. You don’t need to prove to your neuro-typical friends how brilliant your kiddo is. Oh, I know you want them to see him at his best…..but’s just not always going to work out. They either accept him or don’t. Meanwhile, your kid is picking up that he’s disappointing you when he doesn’t “perform.” Just enjoy those conversations for what they are: a gift from heaven. For real.
Oh…wait. One more thing: don’t listen so much to what “they” say. And by “they” I mean the school LSSPs or the psychiatrist. Listen to what *you* know is right and true about your kid. If I had listened to “them,” my kid would be labeled Mentally Retarded and I would be considering group home placement. Today, my kiddo is mainstreamed with limited organizational co-teach, and is moving into pre advanced placement courses. He’s twice commended on his State achievement tests. But remember: what you *know* is true….not what you *wish* is true. If heshe does have significant challenges, love them and work with them where they are, not where you wish they were. If they do have significant challenges, they can have a much fuller life at that level that you ever thought possible. Bust your butt to find all available resources in your area to develop his or her existing potential. If you’re in the middle of nowhere, that means moving, probably, to a larger Metropolitan city. Yes, I said move. I did just that, and it made all the difference.
So….that’s my lengthy advice column. I really, really wish I could fast forward time for your friends and show them what years of hard work with the right docs, and building a fantastic relationship with your AUAspie kid looks like. The payoff is unbelievable. Tell them that we understand the parties you had to leave with your kid kicking and screaming; the restaurants you had to evacuate; the meltdowns Mom had in the car when you just couldn’t handle it anymore….we understand. But hang in there, baby. Wait til you see what’s down the road. It’s sooooo worth it.
Hope this helped!
~C
Shea
hey aprille, i read through some of your posts. i appreciate many of them, but especially love this one. thank you! 🙂
Aprille
You are welcome Shea! I know this is a topic close to your heart!!
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Laura Martin
As a special needs mom, thank you for this. These all ring so true. I love the ones about asking questions and including on play dates. I think people are afraid to ask questions – I love questions! Thank you – the world needs more friends like you!
stacie
I am not sure where these woman are located or what programs they are currently enrolled with, but I work for an amazing place called CARD or Center for Autism and Related Disorders. We are a world wide company and we have had amazing results with our kids and their recovery.. Perhaps we could help you ladies as well.. I hope you all the best wishes and pray for a speedy recovery of your children..
Aprille
Stacie, I’ve passed along this resource. Thank you for commenting!
Anonymous
Just wanted to point out that while milestones can be reached and growth made. Special needs children don’t recover from their needs. Most often these things are genetic or problems with neuro receptors. It is not like an illness where they just get better and go on with their life.
Donna
As the Mom of an autistic child I would add two things. First, even though I might not be able to drop everything and go shopping with you, come over to visit, or come to your parties…please don’t stop inviting me. I may have to say no more than I can say yes, give me the opportunity to give you an answer. It’s nice to know I’m still wanted.
Second, when I do break down and ask for your help, don’t turn your back on me. I understand when circumstances don’t allow you to come right away, but don’t reject me repeatedly. ESPECIALLY when the help I need is to be able to spend some precious one on one time with my non-autistic child. You’re not only rejecting my plea for help, you’re also teaching my typical child that “friends” toss you aside when they can’t use you anymore.
Anonymous
Very true…
Meghan Glass Hatley
oh i completely agree my son is 6 and is also autistic and I have a large family who sometimes don’t understand why I can’t just drop everything and get sitters like you would for a typical child but don’t stop asking cause maybe the one time you didn’t ask I could have gotten out for the night and could have had that care free moment with everybody else
Katie
To be honest, whether someone can be cured or not is up to God. I don’t know that a pronouncement that they “can’t” is helpful or relevant. Unless it’s being made by someone diagnosing or is said in response to a DIRECT QUESTION by a parent who wants to be realistic, I don’t think that “He can’t be cured” necessarily needs to be said. God performs all kinds of miracles. But it may not be until that special-needs child is 50 years old. It’s not a reason for not planning adequately, but please, refrain from reiterating anything pessimistic.
Aprille
Katie I understand what you are saying, but I think whether a person would agree with you will depend on their views of religion, God, and healing. I would never to assume to impose my views of God or healing on another. That’s not what this post is about.
Janet
As a special needs Mom, I can tell you that you are so right! I especially appreciate #6. I have spent hundreds of hours researching my son’s illness.
He has schizophrenia. Now grown and
much more stable, but it has been a lonely battle. If my son had cancer or a physical disability I believe I would have had much more support. During the worst if times nobody from church ever showed up with a casserole. Even family didn’t understand.
Aprille
I think that’s so sad – especially about your church letting you go through things alone. I hope that this post will help raise some awareness!!
Laurie Reisman
Janet, I’m sorry and I’ve been where you are/were. My daughter suffered since 7 yrs of age with something that looked like bi-polar or schizophrenia. She’s almost 18 and doing well, but when she was young, it was hard. Emotionally, I had a hard time with it and my extended family left. Special Needs is special Needs, but somehow mental health issues still carry a stigma. So glad your son is doing well.
Karen
Many years ago when I was a Girl Scout Leader and the Service Unit Director for my county, I saw one child’s name on a “wait list”. She had been on that wait list for 4 years. I called her mother to find out more about the little girl, and found out that she had spina bifida. None of the leaders had ever wanted a special needs child in their troop. I decided that if Susie’s (not her real name) mother wouldn’t mind having her join a troop with girls older than her, that we would invite her to join ours.
Susie was a member of our troop for 5 years, until I resigned as a leader. My “normal” girls and I learned far more from Susie than she learned from us. We made a rule at the last meeting before Susie joined that is she couldn’t do something, none of us could, unless we found a way for her to do it too.
On one camping trip to a lodge, we served meals buffet style, each girl taking a tray and serving themselves. I happened to see Susie sitting on the stairs the second night, not eating. I went to find out what was wrong, because she had not eaten at all while we were there, I still remember, 27 years later, just how stupid I felt when she told me she could not carry a tray while walking with her crutches. It had never crossed my mind that she would not be able to do that, and she did not want to be different from everyone else, and so had refused to ask for help.
I am still friends with her mother today. By reaching out to a special needs mother, and offering to try to make a place for her daughter, I made one of the best friends of my life.
Aprille
Wow – this story gave me chills. Kudos to you for having compassion on this special-needs girl and blessing her and her family!
Dayna gold
I have a. 17 year old autistic, thank you for posting this, very good advice
Anonymous
I’m just dad, but have seen the toll it has taken on my wife. We’re fortunate she is able to work from home, but then she’s never off. I don’t think it is good for people to be home all the time or not get out. Maybe if someone were to “be a distraction” take her out for girls night, just putzing around relaxing. Some time with the child, but also with buds. Have some social get out time even though they may be tired, withdrawn, frazzled. Maybe even a date night to KEEP ALIVE and not feel so isolated and alone. The caregiver job is ever there, at least it may be more tolerable if they can rejoin life. just dad
Aprille
Thank you so much for offering a dad’s perspective here!
Katie
Oh, my mom needs that SO MUCH. And she doesn’t even know she does. She has local family and no one, other than my sister, gives her a reprieve. Seeing the toll this has taken on my parents leaves my heart heavy sometimes, and we are looking for special long-term care as they cannot do it much longer. I think it’s hard to keep a perspective on what is “normal” when you’re chasing a meltdown-prone person with social difficulty (or no social interest) much of the day to keep her from doing something inappropriate, or acquiescing to absurdly rigid routines because you cannot handle a meltdown from someone who is now physically stronger than you are. (Yeah, like I said, they really need help at this point.)
I really wish more people cared enough to get involved at that level, to not say “I could never do what you do.” SHE can’t do it either–she just doesn’t have a choice!!! When I think about this I renew my resolve to reach out to those near me who have special-needs family members.
I’ve also thought about the horrible strain these marriages come under and how we could minister to these marriages in particular, BEFORE they break up, so there is still a breadwinner, still a 2-parent household, with all the other difficulty. (By God’s grace, my parents have been honorable, responsible lovers of God and each other and never even hinted at splitting up.) I’m not sure the best way to do that, but perhaps providing for a date night would be a good start.
kathrynann24
YES!! I have to say I agree with every word here.
Anonymous
You, my friend are not JUST a dad. You are amazing.
laura
You, my friend, are not JUST a dad. You are amazing. Perceiving the notions that you entertained here are extremely important to the success of any mother. Knowing this has likely meant the stars to your wife.
Kristin
This was an awesome article.. My nephew was diagnosed with autism recently at 5 years old and they both have these struggles everyday. There is nothing a special needs mom wants more for there child to be ok. My sister struggles everyday never gets a break between drs and therapist plus she has a 2 year old and a new born that she needs time for. Her hands are completely full and she never complains!! Prayers to all special need parents and god bless!!
Jennifer Sexton
I babysit for a family that has two kids with FragileX Syndrome (one is more affected than the other) these kids aren’t invited to birthday parties very often and rarely play dates. It sucks that people don’t understand…but when you take the time to get to know them, lev their kids the way they do and learn about their diagnosis you begin to notice just how hard it is for them. Thanks for this post. I can’t say it helped me but it certainly will help others who haven’t yet experienced the life with a special needs child.
Jennifer Sexton
Love…not “lev”
Hillery potter
I liked the suggestion of not comparing or brushing over things. My 3rd child is hypotonic, though mild and also has sensory issues. My 4th child, has just been evaluated for a significant communication delay. People don’t think anything is wrong. People hear her babble and say she is fine. She is almost two. She doesn’t say mama. She can’t understand simple directions. There is something different. I know that, and the specialty we see know that. So when my “friends” say there is nothing wrong, it hurts deeply. They say not to worry and leave her alone. It has made me want to stop talking to them, which isolates me further.
Jill
I have 2 boys who are very low on the asperger spectrum which is very hard because to look at them you can not tell at all! So when they do not always act just right or do things people are quick to make judgments that they are just little brats that need a spanking! It is very frustrating to feel like you have to explain all the time why you handle things in a different way! I gave up I do what I do and I don’t care I love my boys they are very sweet and caring to everyone with sometimes some bad behaviors that we are getting under control!
robin
Please teach your typical child that the special needs child also needs a friend. Autism is not catching, and that the autistic child is not purposely touching or repeating something to annoy you. This frustrates me to no end. My 15 year old daughter has no one, and it breaks my heart. I see her being laughed at, or pointed at and talked about… She has the most warm heart I know of… As she gets older I get so upset… but she is happy in her world.. Just wish there was more acceptance..
Aprille
Wonderful point. I so wish that I lived closer to my friends so that we could have playdates and my son could be friends with their boys!
Anonymous
I was a special needs parepro for the local school district. All of this is sound advice for anyone. Thank you for sharing.
Jennifer
I think the list is good. I will add that as a mom of a child with a rare chromosome disorder it’s very hard because there isn’t a lot of information out there (we don’t even know much and we’re “experts” in our child). It’s very lonely and regular play dates are hard because I not only have to ensure my oldest (special needs) child is taken care of (and haul his food), but also have to take care of or chase my neuro-typical child. It is significantly easier for me to host people at my house because it is handicapped accessible and I have the needed equipment to take care of my child. Fortunately I have friends that are very willing to come here regularly and also accept that my home may not be perfectly clean when they come over. Those play-dates make this life feel a lot less lonely.
Aprille
Hosting in the home makes a LOT of sense. I’m glad that you have friends willing to join you there!
Cindy shelton
What a beautiful act of kindness!! You have given your friends a voice and that is a priceless gift when your every waking moment is consumed with mothering your special needs child. My sister and I have both have had special needs children and it consumes every bit of strength and energy you have to make it through the day. I rejoice with your friends that they have such an awesome friend as you and that great awareness has been brought to our silent sufferers – moms of special needs children….we push through and give of ourselves till there is nothing left to give and then we give some more 🙂 thank you dear friend for the gift of this post 🙂
Nancy
Thanks for this wonderful post. I saw it on Tripp Halstead’s Mom’s FB page and decided to read it. I know several Moms of special needs children, and have been a nanny for special needs kids, and I appreciate that you took the time to write down what many of us were thinking already. People do not mean to be insensitive, but many times they are too scared to include the children or to speak to the parents. Fear of it happening to one of their children, or fear of scaring their own children is part of it, I think. You are very insightful and stated your ideas in such a clear way, and it is appreciated. Thank you.
Janice Steskal
I love this! I am not a special needs mom, nor am I around any special needs Mothers right now. Although it is very in formative for when I am in contact with any! Thank You for teaching me something new today! God Bless you!
Claudia Mejia
Big Thank You I’m an Special Kid Mom and Cry when read this, So true that I have to share this with family and friends because I need they learn to understand a little bit my baby and his behavior and why I always try to protect him. Thanl you.
Heather03
This was very helpful. Some of the things you posted I already experienced on my own thru different relationships but one thing that I did not know was comparing may bother my friends! I have 2 healthy children that do act up from time to time like any other kid. I have made comparison’s with my friends children. Thank you so much for this.
Aprille
I’m so glad you took this one point away from the post. I’ve done it a lot of times – still have to bite my online tongue more than I care to admit! Baby steps!
Mary Heinz
Great post. My son has ADD but I don’t condider myself a special needs mom. I do have several friends who are and I love their kids and love and appreciate them so much. I often want to do more, just don’t know what. Thanos gor the tips!
limejello1976
I am a preschool teacher and a mom of a child with SPD. I remember when my daughter was four, I invited her classmates to the park (her favorite place in the world at that time!) for a birthday party. One of the little girls in the class had a disability and her mother called me, in joyful tears, to RSVP. It turns out none of the other parents invited her to parties because they thought she would automatically say no. At least, that’s what I hope is true. This little girl was so excited to be included, she talked about it for weeks both before and after the simple cake-and-ice-cream in the park party. I made it a point to interact with her at the party and show others how she could easily be included.
The next year, that child was in my class, and moved away, but the smile on her face, and her mom’s, has stuck with me and will always.
One thing you can add – be an advocate for your friend’s child, especially if it isn’t a well known diagnosis like Autism. I have a friend who is going back to school and every class she takes about children usually has a “special needs” requirement. She’s made it her mission to do all her papers and projects on SPD (Sensory Processing Disorder) . She lives in a different part of town and made sure I was aware of a new sensory gym opening up in her area and offered to check it out before I dragged my child all the way across town, and asked for a list of what to look for. She’s a great friend to have.
And to fellow parents of special needs kids – don’t get so caught up in your own child that you forget that others are fighting similar daily battles.
Aprille
Wonderful advice – and I love the birthday party story!
Gwen McField
THANK YOU! I am the mother of 3 sons ( 15, 13, and 11). My 13 yr old has Fragile X Syndrome and Epilepsy. It has been a difficult road but God is still working miracles everyday! I LOVE the list! It’s very difficult raising children PERIOD but add a disability to the mix and WOW. Your friend is blessed to have you in her corner
Regina
I hate when people tell me my son is just being a boy…like when he is climbing the outside of the stairs…what they don’t know is that he doesn’t have the motor planning to get down so when he tries and moves the wrong hand or foot he could fall over 5 feet!
Shirley Parker
What a great post. I have been following a family with a special need beautiful child. It is hard for me to put into words sometimes what I would really want to say. I have no idea what this family goes through on a minute to minute day. God Bless all these families because they are very special to be able to do this. Thank-you for teaching me a new lesson today.
Jennifer
Thank you so much for this Aprille! As the mother of an ASD 6yr old sweet boy I would like to add that it is a very isolating world. Come to OUR house it’s just easier. My son is a “runner”, meaning 90% of his time is looking for a way out. I have NEVER left my son with anyone due to it.
Aprille
This is a common thread among these comments! Thank you for sharing!
Melanie
Something else for the list…offer to come visit me at MY house. Transporting a special needs child is hard. Getting a babysitter is damn near impossible. I want to see my friends, but it’s so much easier when they come to me!
Aprille
One of the other commenters mentioned that as well! So good to know! Thanks for sharing!
Shiloh
I am a special needs mom & this is a great read!! Especially the one about giving advice. I know people are well meaning, but it sometimes hurts my feelings and feels like people don’t believe that I have my child’s best interest in mind 🙂 Ice been struggling with that a lot lately & the entire article hit pretty close to home 🙂 I am definitely sharing! 🙂
Anonymous
My daughter is a ” SPECIAL NEEDS MOM.” I ADMIRE her in every way. They were involved in a car wreck in 2008 and my grandson suffers from a TBI, (Traumatic Brain Injury). He was perfectly normal before the accident, smart as a whip….LOL. We have had to make adjustments in our lives to accommadate his needs. I would not have it any other way. My daughter can tell you that ALL of these things have happened to her. We were in a Walmart and one of the sales clerks was making fun of our grandson because he was being loud due to his TBI. That is fine because we no longer go to that Walmart. She has lost friends due to this and it bothers her sometimes but she holds her head high and keeps on going. Finances are a HUGE factor. They struggle but with GOD”S help they survive and can hold their head high. I have ALWAYS admired parents of SPECIAL NEEDS kids because it takes a lot out of you. You have to sacrifice everything to do for them. Even siblings have to suffer. My daughter was 3 months pregnant when they had the wreck. My granddaughter is getting ready to celebrate her 5th birthday. I will tell you a little bit about the wreck. My daughter was on her way to her OBGYN doctor. They was going to hear the baby’s heart beat for the first time. My grandson “Deven” was so excited. There was a construction zone on I-40 and they was in stopped traffic and a transfer truck hit them at 60 mph. My daughter’s car was the first one he hit. The truck pushed them 180 feet up on to a bridge railing. My daughter was the least injured but my grandson has a TBI. SO THANKFUL that we still have them all. My sister and her grandson was also with them. They all SURVIVED the crash. My GOD is AWESOME!!!!!!! If you ever see someone with a “SPECIAL NEEDS CHILD” remember God BLESSED you with a NORMAL CHILD. This could have been you. Pray for these folks. Don’t make fun of them. My heart goes out to all that have SPECIAL NEED KIDS because that is what they are SPECIAL!!!!!!!!!!!!!!!!!!!!!!!!!
Robyn
Thank you for writing such a powerful message! My son was diagnosed 7 years ago with TSC. We have had our ups and down, as has anyone with a special needs child. But, I have cut people out of our lives for being so ignorant to our situation. God Bless You! Continue to share your words!!
Rebekah
Thank you so much for writing this article! I am not a mother, but I am a caregiver for a special needs child. I spend 5 days a week with her and she has touched my life more than anyone will ever understand. People don’t really know how to comprehend the needs that her family has because of her condition, and it is articles like this that will help educate them! I’m sure your friends are incredibly grateful for your support and understanding and I pray that you inspire someone else to help a special needs mom just they way you do!
Lisa Krauskopf
Great advice! I am a special needs mom of a tube fed child and a teacher. I can tell you that some of the best caregivers I have found (the ones that change diapers on teenagers,wipe drool, “do” feeding tubes, entertain, interact, and love my child) are aides from her public school classroom. Typically they do not make as much money as they should and they are often willing to help and make a little extra money too. Even if the child is not school age, you could probably call the school and ask to speak to the special education person on campus. Start with the school the child will be entering but don’t be afraid to go to the Jr. High or even the high school. Our favorite caregivers have now become her surrogate grandparents and have been with us for years. Just wanted to put that out there.
Aprille
Wow that’s fabulous advice. Thank you for sharing!
Terri
I have 5 daughters which the first 4 are between 14 and 19 and the we have 2 1/2 year old who was diagnosed with a Rae disease and has epilepy she does crawl, walk or talk but you can tell she wants to do it all and she definitely wants to play with other kids. My advise is don’t just look at her in her wheelchair and say oh how cute (which is very) stop and say hi my name is and introduce yourself. Also, don’t tell your little one to be careful she is no more breakable then your child and alls you are doing is making others afraid of her. This is an awesome message thanks for sharing. Also, you can check out and read about Makenzy at Prayers for Makenzy JoLee Belcher on Facebook.
Shannon P
Great article, all great advice! I would just add one more:
Don’t pity us! We are a happy family, challenges and all. Really happy! We don’t feel sorry for ourselves, and we don’t want others feeling sorry for us or our kiddos either! 🙂
Carlie
I work at a special needs camp during the summer called Camp Blessing Texas. The special needs campers have taught me more than I could ever teach anyone. Special needs people are so incredibly beautiful. The weeks I spend taking care of a special needs camper I have grown to have such an immense respect for their parents. I do it for 5 days and I am exhausted emotionally, physically, and mentally. However, I wouldn’t change it for the world. Thank you for letting me know in what ways I can support their moms. It takes so much strength to be a special needs parent and I admire them. They see the strongest people I know. Thank you for this article.
Tina Coleman
I have a friend with a grown daughter now who is autistic, and i must admit, while there where times back in the day my husband and i would take her for a few hours or sometimes over night to give her a break, i really did not understand the true meaning of raising an autistic child. I have an aunt as well who has had her granddaughter from age 2 to her current age of mid 20’s and it has and still is a very hard road for her, she has given up her normal way of life to care for her. Something i admire in her. Thank you so much for spreading the word, we need to give these families the love and support they need to get through the most difficult hours and days that will always bring about new and sometime more difficulties than the day before. Thank you again for a great resource and to spread awareness! 🙂
Brittany
Beautifully put! I could not have said it better myself!
Whoamitojudge
I’ve thoroughly loved & learned a lot this morning. I know SN moms; I’ve worked with SN kids; I have friends at church with SN kids. I guess one things that I think I’ve learned (or maybe misunderstood) is that SOME SN families don’t think that their SN child needs “fixing” or “healing” !
Would they have wishes for or prayed for their lives to be different ? Probably Yes ! But they’ve also SOMEWHAT come to terms with what God has allowed & Entrusted them with. Does that mean that there have not been horrible days that they wished they didn’t have to endure ?!? Of course not !! But I think, or I hope, that I don’t give them the opinion that their SN child should be; or needs to be, different than they are right now. It’s a process that I can not fully fathom, but certainly one I don’t want to assume to know that they may; or may not; have accepted “their child, their gift from God” as just that !
Their gift from God ! I still pray for them, i still support them, i still love them; and i pray that i still make them and their entire family (SN & what others may refer to as “normal”) feel welcome, and hopefully included. But, …Who am I to judge !?!
Jesus loves the little children, all the children of the world ! I pray that I’m doing so too !!
Thank you so much for your awesome love & support for all your friends and for opening my eyes to things that I may need to consider & look at differently than I have in the past. May HE continue to bless all your days !
Leslie
I am a mom of a child with special needs. I am NOT a special needs mom. Nor is my daughter a special needs child. She is a child with special needs. We need to not be labeled like this. I read a post one day -someone said a man’s ” wheelchair daughter – totally inappropriate.
Aprille
I’m failing to see the difference here…can you elaborate?
Anonymous
What she means is that above all else, like you she has a child! That child just happens to have special needs but doesn’t define who she or her child are.
Aprille
Right – which, if you read the post, is the #2 point I address. I fail to see how saying “special-needs mom” is a label. When my husband was in the military, I called myself (and was called by others) a “military wife.” Was I a normal wife who had normal struggles? Yes. Did I let that define me as a person? No. Did I take offense to the term? No.
I’m sorry if you are offended by the term, but based on the outpouring of comments and post fews from thousands of other moms, I think that this offense is not something that other moms of special needs children share.
Anonymous
I didn’t make the above comment, but I think I understand what she is trying to say….Her daughter is a child first, and has special needs second. She is a mom first….then, a mom with a child with special needs. I am a nurse, and we try to remember to say “the person in room XXX with the broken leg” not “the broken leg in room XXX” if that makes sense. The PERSON comes first, then the disability or diagnosis. What we need to remember is that children with ANY special needs are CHILDREN first!
Aprille
Well said. That makes a lot of sense.
Anonymous
As the grandmother of a child with ADD and OCD we see melt downs many times through out the day. He is very intelligent, yet failed kindgarden last year because he had a teacher who simply could not and would not try to work with him. This so called teacher told him he was stupid and unteachable. Thank the lord he has a very patient teacher this year,its so hard to hear even family members that say he just needs a good old fashiiond butt whipping. They don’t even try to understand. We are in the process of finding the right medicine for him, he hates behaving the way he does and is constantly telling us he loves us after a melt down. Poor baby is afraid we will stop loving him,if he doesn’t act better.But the fact is he absolutely has no control over it at this point.we are praying the doctors finally get his meds right.I wish it could be that simple for all special needs kids. Praying for all of you.
helentisdale
What a wonderful & needed post. As a single parent mother/caretaker of a special needs son, (40yrs now), the points still would help and be appreciated. So greatful for the awareness you are bringing!
Angelica Stanislawski
Please add that hugs don’t hurt… Being a special needs mom, (autism being the least of her issues), sometimes a hug from a friend is just about the most awesome thing in the world.
Aprille
Love this advice! My friends I’ve never met in person but I can’t wait for that day to come when I can give them both great big hugs!
Shirley
Excellent list!! My 14 year old son has epilepsy, severe developmental delay and autism. I wish this list had been around in the early days!! My friends at that time couldn’t handle what I was going through. I have different friends now.
I would add one thing: Don’t bother with #10 unless you do or attempt to do 1-9. I feel rejected and uncared for when people say “I’ll pray for you” then walk away.
Thank you for this post! 🙂
Aprille
Fabulous advice!!! Prayer promises can definitely seem empty when they fall on a hurting heart!
KellyG
Thank you for the list. I cried when reading it. Thank you for being there for your friends. I am blessed with many friends and family who follow the majority of your suggestions, but it’s still nice to have it listed and available as a reference and to know you put so much thought into it…
#6 – I honestly don’t mind advice presented sensitively… “Would something like ______ be worth considering?” or “Does your child work well with _________ at all?” I never know when the next good idea will come from… Offering advice by assuming it will work “Why don’t you just ________” would be INsensitive and hurtful.
#7 – I also don’t mind hearing that your child does something also… in fact, sometimes it assures me that perhaps a portion of my child’s struggles might be neuro-typical and that perhaps traditional approaches would be worth considering. I agree that it’s not exactly the same in many instances, but wouldn’t stop friends from discussing it. Sometimes I assume ALL kid issues are based on their unique circumstances and I forget it could be a part of “normal” (hate that word) puberty or teenage development, etc.
Thanks again!
Aprille
Thank you so much for sharing your perspective!! You seem very open minded and very compassionate toward the struggles of moms of neuro-typical children and I love that!
Gail
Thank you for this post ! I am a Mom to 3 special needs boys. One thing I would add is “please don’t ask me if I can forget get Autism for a while, it’s impossible” !
Kisha Riley Rasband
LOVED this article! Most of all QUIT telling me you feel sorry for my daughter/me, we are great, when you find out I have a special needs kid and you say “oh I’m so sorry” I want to slap you, My daughter rocks, and has an amazing life ahead of her!! We don’t need/want your pitty. It’s ok to ask questions but don’t pitty me. .
yinyang21
Fabulous advice! Great blog, thanks for sharing. I’ve also found, being a parent of a child with special needs, that people downplay his condition when he comes out of an operation and it went ‘well’. They say, ‘oh look, I told you it would be ok….so he’s good now?’ Honestly, this irritates me more than anything because with my son’s condition, he’ll never be ‘fixed’. So no, he’s not ok and with his condition, things can get better one day and terrible the next, so to assume that there is no more problem is sort of ignorant and make me not want to talk with that particular person about it again. Don’t get me wrong, I don’t need to have my hand held or sympathy, whatsoever, but saying my son is ok now, is something that doesn’t sit well with me. He’ll unfortunately never be ‘fixed’, so please don’t pretend to know that it was going to end up ok. Again, great blog…thanks!
Valorie
All are great suggestions. One more I might add is if their child has a dx before or right after birth, please still say Congratulations and admire their baby. We had only a few people tell us that and it really mean’t a lot to us as we were terrified and needed to hear something positive. Also, hospitals need to be more sensitive to parents that have a newborn in NICU. It’s so hard to hear other families with their babies when you’re not even sure yours will live…
Aprille
Wow – great advice and something I never would have thought of!
Trudie
One of the main things that others don’t understand is the grieving process a mom has to go through when she first hears the diagnosis and then realized that her child will never full fill all the hopes and dreams that she had for him. As in a death, I had to grieve the loss of those dreams and go through all the stages of grief: shock, sadness, anger and then acceptance. I needed time to go through it and the process is ongoing…there is no time frame on grief. It can hit you at anytime and anywhere. To really be a good friend to another mom with a special needs child (or adult) is to realize that there is no time limit on this. My son might be an adult now but the loss of who I thought he would be can still hit me and then I can start the process all over again. The only constant is the fact from Jeremiah 29:11 where the Lord says “I know the plans I have for you, plans for a hope and a future.” I HAVE to bury my old dreams for him and cling to a new dream…one that God had planned for him from the begining where he does have a hope and a future. Yes it looks different than the one I thought it would be or even from what the world says is a real future…..but it is beautiful. The greatest help we can give to another mom in this situation is to be aware of the grieving process…allow her to process her grief in her own time and be sensitive to it.
Ljb
My only experience with this subject is the Tripp Halstead life story that I follow daily. From what I read here most make a lot of mistakes giving much advice and making statements that clearly guilt Staciie the mother because she is forever having to explain her decisions, her actions, her movements. It’s sad. The majority mean well but hopefully the followers will read this and stop with the endless suggestions. I’m guilty myself, I plea ignorance. Thank you I’ve learned so much. Oh one more thing I agree with one remark about religion, God is not unrighteous as to “give” anyone such sadness…it is simply unforeseen occurrence that befall us all at different times. He will however strengthen you all!
cathy urato
I love your article. My son has had various diagnoses and people try to understand, many have been wonderful, but it is a difficult path and sometimes you feel alone. Unless you walk in the shoes of a mom with a special needs child, it is difficult to understand. But the most powerful gesture a friend can do is be there. Let mom know that you are there for her and listen to her vent. I look back when he was younger and don’t know how I got through some of those weeks of various appointments, therpies and being mom, wife and taking care of the house.
Harmony
I am a mother with disabilities not visible to the naked eye. I’m blessed to have a child that does not have any disabilities or special needs. Even she is unaware of some of the difficulties that I face. However, I have witnessed her being wiser than her age and more compassionate beyond her years with other peers. She is usually the first one to include another child with disabilities or play with one who may “seem different” to all the other children. This is not something we’ve talked about, mostly because it has never been an issue to myself or her. Everyone is treated as the way we would like to be treated. This amazing article has taught me even more! I will read this to my daughter and talk about ways we can go above and beyond to care for and include people with special needs. I love the idea of being able to ask questions. Sometimes I think that may be too forward or inappropriate but it makes sense that it could be assuring to feel included and truly cared about!! Thank you for this article and for being a wonderful advocate for your friends!!!!
Christy Cutrer
Thanks for this. I am a special needs mom, and it means lot when a friend will drop some thinking off unexpected or offer to help out. But as a parent sometimes it’s hard to accept the help. So sometimes rather than offer just do it. Because sometimes we don’t want others to know we can’t handle what we have so we decline help. But in the back of our mind or after we are kicking our self for not accepting help.
Jennifer Davis
I am a teacher of kids with special needs. They are all different but they are still someone’s child. Knowing this and responding to them and their families with compassion and honesty, not judgment or sympathy, has always seemed to make parents feel more comfortable and open. I know my own daughters reach out to their peers who are disabled and stand up to those who bully and ridicule. I have always believed that these children have a special connection to God.
Joann
My son suffered a brain injury when he was 15 months old. He is now 24 years old and doing much better than anyone predicted. I remember when he was young reading somewhere that the kids who are the most comfortable with your child with special needs are the kids who’s parents are the most comfortable with them. I have found this to be so true!
I will never forget the time my son (8 or so) was in the church nursery during a small church event. He loved to sit on the floor and play with the toddlers. He had been doing fine for quite some time when one mother came out to where I was and asked me to remove him from the nursery because he was scaring the little ones. (Other moms told me the same day that he was fine) Her children never did make an effort with my son throughout his growing up.
I also will never forget the parent who went out of his way to make sure his son understood my son’s limitations and how they could change the game so he could play. This parents children grew up to be compassionate and caring towards our son and others.
In other words…..kids pick up on their parents feelings, so please think of that the next time you see someone who is “different” than you.
Robin
Special needs parent’s can go through many different things. But special needs children will take your heart and hold it strong. Although a lot of AU children find it hard to tell you what is going on, answer questions or say I love you, They do understand what we are saying to them. So remember what you are saying about them, they do hear you and it can still hurt them even if they do not show it. Even when they aren’t speaking they are the smartest children you will ever meet. the challenge is getting the information out of them. Look for the small connections, use picture symbols to communicate with them or sign language if that works for them. Look for signs of reading many of them do. work on them tracing letters and then words. Very soon they will be writing and you can try to write questions that they may answer by writing. Every AU child is different. This is were the challenge is. So try different things and don’t give up. I have worked with special needs children for 20 years and can not imagine doing anything else with my life. This article is awesome!
Nora Gage
One thing I would add is don’t make light of their situation. Don’t try to downplay what they are going through with comments like “it’s not that big of a deal”, “she’s fine”, “it could be worse”,friends that have regular need kids don’t know what a big deal it is on a daily basis raising a special needs child, and yes maybe it could be worse, but at the time it might be the worse thing happening to ur family!! Nora
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Ruth Sarah
As a special needs mom, the one thing I would add, is don’t ask me what you can do to help. Most days, I have it all worked out how I’m going to accomplish what needs to be done. That being said, I’m not going to turn someone away who stops at my door and says “Hey, I’ve got an hour, could I wash the dishes or do some vacuuming?”
I’m never, ever, ever going to actually ask someone to come clean my house, and sure I appreciate the offers, but they don’t feel genuine. You want to be taken up on the offer to help, show up to help, maybe make sure I’m home first.
Shelley Babbit
Thanks for such an amazing article. I am a special needs mom and the advice that I would give and that I experienced a couple of times, is people wanting to exclude my child in invitations to parties, BBQ’s or any other place kids might be. It is ok to invite me alone, but if other children are going to be there, maybe your child might learn something from mine or mine might learn something positive from yours. Don’t exclude us. Makes me, the mom, feel bad, even if my child doesn’t comprehend what this means.
jeanne
Don’t judge – if you invite us out and my son has a meltdown when you pull into the driveway, just go without us, don’t make me feel like I have to apologize for him or worse, cajole him into doing something he doesn’t want to do. Don’t call my child “manipulative” or me a bad mother because I’ve learned to risk a meltdown only in matters of safety. You have no idea, if you don’t live with it. Don’t look at us like we’re weird or defective. Kids on the spectrum are different, not defective, and they work so much harder than “normal” kids to achieve the same milestones.
Stephanie
A couple of things I would say. First, thank you for being sensitive to this. You are already helping more than many. Second, a lot of these same ideas apply not only to parents with children experiencing developmental challenges, but also for parents with children diagnosed with illnesses such as cancer or kidney disease or cystic fibrosis. Not all special needs are “early onset” and families with older children that have just been diagnosed need just as much support – maybe sometimes more – as those who are adjusting with younger kids.
Yes, I am a mom with a child with special needs. My daughter has Rett Syndrome, which is a neurodevelopmental disorder diagnosed in the toddler years. I also have a friend that has lost a child in an accident, and then had another child diagnosed with illness after that. We’ve been able to support each other, but it’s been “interesting” to watch our other friends kind of wander away as they don’t know how to interact with us anymore. I understand, from a psychology point of view, but it still occasionally can sting with loneliness. Seeing what you’re doing with this blog is very heartwarming and gives me hope that maybe, if enough “typical” moms can be inspired by you to be like you, being a special needs mom won’t have to be so lonely anymore.
Aprille
Thank you so much for sharing your thoughts. I agree, I tend to lump children with diseases such as cancer, cystic fibrosis in with children with who have had special-needs from birth. Each story, each situation is going to be unique – but the things I have mentioned here can definitely apply to those situations as well. I simply haven’t really had much opportunity to interact with those sorts of things, as of yet!
Natalie pullen
My little one has cystic fibrosis and he was diagnosed at 4 weeks. We started breathing therapies and beating his chest at 6 weeks old. The newborn screen now tests for CF so it is more of a special- needs from birth diagnosis now. The hardest thing that I have experienced in regards to those around me is completely ignoring my kiddo. Even when he was just a month old my cousin literally wouldnt look at him even though I was oohing and ahhing over her 3 week old baby. I don’t think that people are hurtful intentionally… they are just so uncomfortable that the only thing they can think about is how THEY feel. I love when someone looks at T’s feeding tube and says “what’s that?” or “how does that work?” T promptly lifts his shirt and proudly talks about his TWO belly buttons. 🙂 I have been truly blessed to have a few families in my life who truly care and try to be as understanding as possible!!!
karen epperson
My son has Down syndrome and the one thing that bugs me is instead of listening when I say that I am discouraged or worried. A lot of people try to quiet me with “oh those are sweet kids” or “such loving angels.” I agree my son is sweet but, he needs to learn to eat, speak, walk, etc……just listen!
Kerri
Fantastic post! Thank you for writing. As a special needs mum with a son with ASD and a NT older daughter, offer to pick up the sibling from school or take them to birthday parties. I have friends who do this, and I can’t tell you how much easier it makes my life! Muslim at school pick ups or dragging him away from parties he hasn’t been invited to is a disaster. Also important point about educating parents to educate children what to expect around their special needs child was a great point. My son is 4 and has had 1 birthday party. My daughter had countless at that stage. It’s heartbreaking…
Uninformed and confused.
Not trying to start a debate but another point of view. I don’t have a special needs child but I do know people that do. Reading this and the comments actually make me even more afraid to say or do something around them. I read the do’s and dont’s but then I read in the comments about how somebody said or did something that a particular person deemed insensitive. Please take into account most of us do not have experience with special needs people and do not know what to say or do. Most of us aren’t trying to be insensitive when we say our child went through something too. It’s not that we’re comparing our child to yours, it’s that we’re trying to find that middle ground to have something to discuss with you. We don’t offer to watch your special needs child because what if an emergency happens while you’re gone? We wouldn’t know the first thing to do. Something you deem routine in the care of your child is complicated to someone that has never done it or had to learn it. I read one place to ask questions, ask lots of questions but then I read in another comment about being asking offensive questions. No two people are the same. So what might work and be okay for one isn’t okay for another. So some people might figure it’s better to not step on that mousetrap and say nothing at all. How do we know who’s okay with what unless we ask? Then when we do ask we might offend. You’ve learned to grow with the care of your child. Most people are meeting your child when you’re experienced and already have a routine. From what I understand with children with Autism if you mess up their routine or throw something new, different and unexpected in their day it could cause a meltdown. I will be the first to say I wouldn’t know the first thing to do in a melt down. A lot of the parents of special needs children are already defensive of their child and ready to protect that they get offended by an honest mistake or something that wasn’t meant to be offensive but was just taken the wrong way. Most of us aren’t out to hurt your feelings. We just don’t know what to do and don’t want to risk hurting your feelings and it being taken as intentional.
Anonymous
Uninformed and confused, I am the mom of two special needs children and I can’t pretend to speak for ALL special needs parents, just as you can’t speak for all parents in general. I really feel for your concerns and you seem very genuine. Yes, every situation is different, just like every person is different. My advice on encouraging a special needs parent would be the same as my advice on encouraging anyone – don’t judge (no matter what the circumstance, we don’t know what a person is going through) and be loving. True, someone may be offended if you ask questions, or if you don’t ask questions but, as long as you aren’t trying to be offensive, don’t worry about it.
Robin
This is to Uninformed and Confused: Although you may be confused and do not know what to say to a parent with a special needs child please stop and think how the parent must be feeling. Do you really think that they have a clue at what they are doing? Everything that comes natural as a parent is confused with an AU child. If a parent gets defensive with you it is because they may have no idea how to answer or the fact that you are looking at their child in a different way instead of loving the child for who they are . Show there child love and see how much easier it will get. As far as watching an AU child. Spend more time with them to see how they respond at home. Then you will be less scared of the unknown. Some of them do have a hard time with change. But most can still carry on the day. Take baby steps watch them while the mother takes a shower. The small things will make the mother feel like you care. If it is hard for an adult to spend time with a parent and a special needs child, stop and think the parents live with them, care for them and love them every single day. Even if they will not say it they need help, love and understanding. I remember 20 years ago when I started working with special needs children. I had no idea what I was doing. I also know that I have had training on working with them so things are easy for me to say, But please reach out to the parents and children. The more time you spend with them the more you will understand, love them and the more comfortable you will become with it.
Katie Emanuel
“How do we know who’s okay with what unless we ask? Then when we do ask we might offend. You’ve learned to grow with the care of your child. Most people are meeting your child when you’re experienced and already have a routine” is an excellent point.
I am the mother of a 4-year-old boy who has autism and believe what’s most important is being genuine and approaching a special needs family with a servant’s heart.
The 4 things I stand by as needs that can be met by a “typical” family for a family with special needs are located at the bottom a post I wrote to help other families understand sleep deprivation, but they apply to helping special needs families in general: http://wonderfully-made.net/sleepless-series-understanding-sleep-deprivation/.
I feel you can’t go wrong when you pray, offer, listen, and love.
Thank you for asking these questions and making the point you made. And thank you Aprille for this wonderful post!
Mindy
I would say that getting to know your friend and your friends child would be the best way for you to know what to do. And in case of an emergency, you would do the same as any child..call 911.
Kristin
This is a great point. It is important to be sensitive, but it’s also important to not take offense. Thank you for the post and for this comment.
Haley
It’s like any friendship, you have to test the waters to see what the other needs or likes. So ask a few questions, if they don’t seem to be open about it, then maybe that’s not what that person needs from you. Personally, I love questions because I feel like we are getting the elephant out of the room and I can move on to more normal topics. And we know when you bring up something your child did, that you aren’t trying to compare (though some people will do that). But if I’m venting about my situation, unless there’s a moral in your story, that’s where it becomes tricky. I want you to vent to me as much as I want to vent to you. I want to celebrate your ups and downs as well. It helps me feel more normal. That’s why I love the quote above to rejoice with those that rejoice and weep with those that weep. Because we tend to be more sensitive about our situations because we don’t want to be deemed different or to ruin what friendships we have left… if we open up enough to vent or rejoice, let us have our moment. Nothing feels more discouraging then having somebody else then say ‘my child did the same thing’ in the heat of one of those moments. Because the reality is, it isn’t the same thing. There’s always that sting that you just can’t help when you hear about another child doing something your child can’t or didn’t do at that age. We extinguish it the best we can in the heat of the moment because we do want to celebrate with you too, but it still hurts. Sometimes, we will even cry about it later when we are alone. And that’s why they say to be careful about bringing up things your child is doing in the heat of those moments where we are talking about our own situation. I think it’s another one of those things you just can’t understand until you’ve been in those shoes.
I was also one of those parents that seemed like it was doomed if you did and doomed if you didn’t so I never spoke up. Now I’m on the other side of the fence and realize that the silence is actually harder to handle. It feels like there’s an elephant in the room. I want to talk but worried you will downplay or not understand the depth of our situation. Or worse, not care enough to try to understand it. I feel like a lot of what I want to say is negative because it is a daily struggle that I am still trying to get a grasp on how to handle all the stress. And we all know that people do not like to listen to negative people all the time. But I need that release so I can keep moving forward. The parents with older kids will be less likely to talk about the mundane because they’ve got their routine and it’s not a big deal to them anymore or because they’ve already explained it 50 million times. At least that’s my guess based on how I’m feeling now as my child gets older and it’s clearer what kind of path we have before us and we have a good handle on things. I would think some open communication about caring and wanting to understand what it’s like would go far in a situation where they seem to be offended. If anything else, you’ll know that’s a topic to stay away from. And I bet for others, the better release will be to talk about anything but their child. And that’s okay too! But take the first step and ask so you know what page you two are on.
There’s also the difference of parents that have not experienced typical children before having their special needs child. I know how bad bad days can be even with a typical child. So I never want to downplay your struggles either, but I can imagine that for some parents that haven’t had that experience wouldn’t be able to sympathisize in the same way. And we need to understand that because it isn’t their fault.
I agree that everyone is different and will react different. But I think the moral is to just please try. We are just as scared to bring things up as you are. So it’s easier if you make the first move. The true friendships will survive the blunders. And those are the ones we need the most.
As for the babysitter situations. There are some kids that I bet their parents would deem it too hard to ever try to let somebody else watch them that isn’t a trained professional. But there are also parents out there that would love the chance to try if somebody was willing to step up to the plate and say, hey I’d like to help you guys out and let you go out once in a while. I’d love it if we could spend some time learning how to take care of your child so I could do that for you. We would never ask because we know it would be asking a lot of you. It would require time just to learn what to do. But with somebody we knew we could trust, we’d be willing to invest that time if they were willing to invest the same in us. So on that token it might even take some convincing that you are serious. Because it feels like in this day and age that people say well meaning things but never fully back it up when the time comes. So we wait for you to come to us. It’s easier that way. We don’t have to get our hopes up to let them fall again.
Aprille
I so love the advice you offered here. I had no idea how to answer Uninformed and Confused but I think you have done a STELLAR job of sharing a lot about the dynamic in these friendships! Way to go on bridging this gap!
MaryEllen
I think you have made some very common concerns here. Yes it is true we live in a very different and complicated world. Having a child with special needs is confusing to us too. And honestly some days we may be more sensitive than others, but what parent isnt? Our son is 6 years old and has cerebral palsy. My advice on the things you have said is to use the golden rule. Treat others how you would like to be treated. Do you enjoyed be stared at, or ignored like you don’t exist, or if you make a mistake do you want the people around you to be come frustrated and angry with you….of course not. Non of us do. We all want to be treated for the human being we are inside. If you don’t know what to say to a family, it is ok to be silent. Or even better telling them how cute their child is or how well they dress them. I find you can always find something positive to say about anyone child, special needs or not. We are just moms, kids and families. We are so fragile that we will break at a wrong word. We want kindness and acceptance just like everyone. We want our children to have friendships and love just like every parent. This IS normal to us so sometimes it is shocking when others point out.
Anonymous
As a special needs mom I agree with this! I tell people we are getting to know to ask me anything, that I have thick skin and am not easily offended.
I would never expect a friend to watch my children, typical or otherwise.
I do like this article and think a lot of the suggestions are great for moms of typical kids too. Bring a good friend means bring a good listener. Asking questions, offering support.
Britney
Please understand if your friendship changes. I was already an extremely busy mom of four children before our daughter’s diagnosis. Now, with all the extra doctor appointments, therapy sessions, the hours of travels to and from, the research, the extra time allotted for preparations, solving meltdowns, special diet needs etc. I might seem absentee. It will probably take me longer to respond to texts and calls, I may miss a playdate or leave early but I still want to be your friend. I still need you as a friend. I am just struggling to juggle a schedule and someday I will master it. please invite me, even if you know I will say no, please talk to me about the new exercise class you started even though I cant go. Even if I can’t go to Vegas this year, I want to see all the pics and hear all the stories because I am still the same person who enjoys the same things.
stadot
As a young adult who is friends with an adorable special needs boy and his amazing homeless student councilor mother, this is very true. Though I’ve found that I could use a little more help with dealing with peers. My first date was with a guy with leg braces and hearing aides (the date was not romantic; in my church taking sisters out for ‘encouragement dates’ is a common practice and doesn’t necessarily indicate any sort of romantic interest). We communicate alright via text and email, but I feel that it’s very hard to speak to him directly and even when we talk online, much body language, tone, irony, and wit are lost. Honestly, it’s like we grew up speaking two different languages and neither one has quite mastered the other. Anyone have any suggestions for peer-to-peer interactions?
Carrie
I would add #11: Remember that parents of special needs children think their children are just as awesome and wonderful as parents of “typical” children do. We may grieve for the struggles they have or wish some things came easier for them but many of us (I can’t speak for all of us) would not change a thing about our child because it would change who they fundamentally are and we love them unconditionally, just as they are.
Tina Sullwold
These are great suggestions. Our friends were very supportive but they really didn’t know how to help our son or be around him. He is 37 years old and autistic and also mentally disabled .Our friends never really knew what to do with him or how to act around him. If we knew we would usually tell them. But so often we felt left out with family gatherings, on the other hand quite often we would all do things together. He was and is disruptive but they got used to it. That would be my suggestion not to overreact when there is a major disruption from the child. Usually if the child was acting out quite loudly friends just need to be quiet and let the parents deal with the child. What wasn’t helpful to us was a people would always say oh, you poor guys you have it so tough. We never wanted anybody’s pity. Still don’t. Keep in mind these children grow up to be adults. it is difficult to figure out what they should do with their lives. That is always been the hardest thing for us.
Carolyn Grizzle Winterbower
I was the mother of a special needs child. No one knew what to say. I worked in an NICU as a nurse, my peers didn’t know what to say, so a lot of them did not speak to me at all when he was in the NICU. They got mad when I had him transferred to the PICU so I could go back to work. When he was able to come home, I had lots of offers for help, but when I would ask, everyone was too busy. I had a lady ask me when I took my son to the mall, why I would bring something like that in public like he was an alien or something. I tried going to a support group in my area and offended several parents because they thought the NICU nurses were following up on them everywhere. I felt very alone. Very alienated. I had very few I could talk to. I so wish there would have been Facebook then so I could have gotten some support, and people who actually could relate to what I was going through. I do not know how to help others, but am willing to try. My son only lived for 13 months, so we never reached any of the milestones normal children go through, so I still cannot fully relate to parents who have children with special needs. I agree with sometimes, you just need to talk, you just want someone to listen, you just need to vent. My heart goes out to parents with special needs children. Most people who have normal, healthy children have no idea how very lucky they are!
Natalie pullen
Thank you for sharing… I am so very sorry that you went through that alone. I am very aware of the women that I have on facebook that I can go to and ask questions, vent to, and who just know exactly what I go through everyday. It is such a blessing to have them and many times I have thought that I would be very alone if it werent for them. Thank you for reminding me of how lucky I am. I pray that you have found healing from all that you went through. I am sure you were a wonderful mom to your little man.
Anonymous
Thank you for this article. What great advice. I liked how to pray for her and her child and celebrating her victories even if your child hit that milestone 10 months ago, sooo true. I would if you don’t mind, please remove your comment in #2 “Treat her like a normal mom, not some freak of nature.” I had a hard time with that comment, the words seemed unnecessary and might hurt someones feelings. This blog entry is a blessing to many, thank you.
LeAnn
I would add, “Don’t tell her that God sent this child to her because he knows she can handle it, or that special needs children’s spirits are so good that they don’t need to go through the tests other mortals must pass. In other words, don’t try to use your religious beliefs to explain why this happened. If they want to believe something like that, they have probably already come to whatever they are going to believe. You giving reasons why God let this happen makes god sound mean.”
Anonymous
My youngest has a speech disability which involves her muscles not working properly in all parts of her mouth. Now the rest of her is perfectly normal but her speech is not. Some understand the things she is trying to say and some don’t. Shoot sometimes I don’t ….which makes me sad…but I have to agree with downgrading the disability, or comparing the disability to a normal developing child. Don’t tell me she will grow out of it. Believe me I wish she would grow out of it but it will take tons of therapy and work to help her speak like others do so easily. It brakes my heart when a child her age tells her to go away because they don’t understand her. She has melt downs because of this and bathroom issues because of her apraxia and eating/drinking something and not choking issues. She is afraid to eat around crowds and people don’t understand why we disappear from the group so she can eat in private. Any disability whether severe or minor is hard on a parent, especially emotionally.
Katie
I think the “God gave you this because He knew you were strong enough” is ridiculous. It totally contradicts what I know about God. He doesn’t give someone something because “they can handle it.” That means He has this trial He doesn’t know what to do with and He has to give it to SOMEONE.
Anyway, my mom’s heard that as the primary caretaker for a sibling with (severe?) autism. I honestly think it’s something people say to make themselves feel better–much easier to say that, give a pat on the shoulder, and leave than to say “What can I do to help? How could I learn to care for her so you can get out for a couple of hours?”
That’s not meant meanly–we have all done things, said things that were for US–but acknowledge it and move on to real sacrifice, at least real honesty.
Sue-Ellen
I am a mother of four (three with special needs). Family and friends would always make me feel bad about my dirty house. Instead of commenting on how dirty someone’s house is, how about trying to help them get their house in order. Maybe help teach them some organization skills. My children are now teenagers and my house is in better shape, but when they were babies and I was up all night….Well I’m sure you get the picture. Being a mother of a special needs child without adequate support is terrible. We need people who are positive and up building. A strong support system is a HUGE help.
Katie
Oops, that was meant for Leann’s comment; sorry! 🙂
Mindy
It’s great that you have written this…I sent it out to all of my family and friends. I would also like to add…Don’t ever ask what you did or what medicine you took to cause your child to have this disability. That question is probably the most hurtful question that I have ever been asked. No I didn’t drink to much coke..no I didn’t take any medications that would cause Down Syndrome..It just happens some times.
Anonymous
As a mom of a special needs son, please don’t gawk, stare, or talk behind our backs. If you have a question, ask. It doesn’t bother me, and this is just me, if you ask what condition my son has. I will gladly explain. And please don’t feel sorry for us.
JerrySheri Hoffman
I think this is a wonderful post, thanks for writing it. Personally I have problems with a group of women who want to know why my special needs child can make it to certain things and not others, although they know she has multiple birth defects and is medically fragile, gets sick and it becomes something worse easily. Instead of being glad she can participate in some things, they want to judge and bare false witness, tear another person down and this is a Christian group of women, go figure! How about encouraging our family and trying to be understanding? We have spent many a Christmas in the hospital, a Thanksgiving, birthdays, missed out on dance, AHG, drama, gymnastics, and other activities, why can’t they be happy when we make it to a party or a swim practice? People are just so spiteful nowadays. 🙁
JerrySheri Hoffman
And that my child is taking a spot another kid could have. Really? Thanks so much for making our challenges that much harder. Put yourself in a parent of special needs child’s shoes please.
Nana Patti
Wonderful article! I’m sure it will be helpful to anyone unfamiliar or uncomfortable with any type of special needs. I think just the ‘not knowing’ is the biggest obstacle – not knowing how to help, whether to help, what to say, what not to say. Having previously worked with special needs children and adults I am not uncomfortable but I also don’t think there are any steadfast rules. Everyone is different – both parent and child have special needs. I believe the most important thing is to be respectful. I always try to approach parent and child as I would any other parent and child. We are talking about a parent and child afterall, regardless of their special need or disability.
Katie
I’m sorry. 🙁 I hope that you are able to find understanding friends. i knwo it takes time.
Frog's Mo
As an autism mom myself I love your list. Thank You :0). I would only add – recognize that a child born on the Autism Spectrum is also a perfect human being, created just as God, the child and the child’s family intended – even if they don’t remember that on the earthly plain. We all have lessons to learn and lessons to teach in our lifetimes. To recognize this is to open yourself to these lessons and to truly be blessed with the gift of an opportunity for great spiritual growth.
Vanessa
I am a mother, to a healthy 4 year old girl. I buy her bald baby dolls so she doesn’t look differently at sick children. I’m a curious person and have researched a lot about autism, among other things. And I’ve always been left wondering what is and isn’t okay to say to the mother or father of an autistic child. As a mother I just want to be sympathetic without showing pity. I think your article helped a lot. And I think you’re a really great friend.
frogsmom
As an Autism mom, I love your list. Thank you! I would add one thing – please remember that all ASD children are born just as God/Goddess, the Child, and the Child’s family intended, even if we don’t remember that when we enter this earthly plain. We all have lessons to learn and lessons to teach in our lifetimes. Being open to this reality allows you to grow spiritually from being a part of the life of someone on the Autism spectrum.
a mom treading water
Thank you for this article as a mom with a daughter who has a very rare syndrome it has been so difficult that no one really gets it! yes even you will never fully understand what it is like but you have been sensitive and are trying to support your friends and understand the best you can. Friends and even family like you are very rare I have lost friendships because, as someone early on put it, you have to be willing to put extra into the relationship as we may not be able too. We need support we love special gifts they don’t have to be big just a note or offer to do something sometimes people say…what do you need.. which is great but it is hard to say what you need and sometimes you don’t know. I had a lady come and say I wan to clean your house it was nice she said what she would be willing to do!! I guess we just want to know that yes you don’t get it ….you never will …but you see how hard it must be and that you care and are willing to stick by us be sensitive to the fact that one day will be good the next horrible in fact it can change in a matter of hours! Also we grieve and yes sometimes we can see a typical child and be fine the next time we grieve for what we lost it depends on the day. Thank you to all those who stick with us …and who choose to cheer us along as we tread water
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Anonymous
Can I just say I HATE when people say “I know someone who has Autism and they can talk, so your son will talk one day.” So since my son is non-verbal, I must be doing something wrong as a parent, since this random person you know with Autism can talk? Be a friend, check in with me, and include me and my son! Ask if you can come visit. It’s been sooo long since I have had a friend just ask if they can come visit with no strings attached. What I would give to have a friend and their kids go with me to the park with my son.
juliesorbo
Reblogged this on Love, Support, Educate, Advocate, Accept….
Mindy
I always treated my daughter as the gift God gave me. My goal was to help her be the best “her” she could be. We didn’t use labels or make excuses. We helped her learn how to overcome obstacles and accept challenges. Anything that I could be part of, I was. Weekly Bible Studies, church, home group, etc. That kept her having to interact and develop friendships. She was in dance class and I did day care in my home. She took band and went to camp (I was a camp counselor). Every summer I had children I took care of and she learned so much from being with and watching other kids. When she was in high school she said to me: I’m not any different than anyone else, I’m just different.” She’s now a university student studying psychology. She’s just like everyone else, just different. ( : Don’t give up moms. You are the most important person in your child’s life. You too will succeed.
Leah
Can I just say that I am blown away by this article. I have a healthy 3 year old who is not special needs, but a very close friend of mine has a daughter (now 13!) who was born at 25 weeks, and has been through the spectrum of disorders (the one that has always stuck as the dx has be Aspbergher’s), and another friend who’s 13 yr old daughter has Mitochondrial Disease which is rare and can be cause by not enough fluid in the uterus. In both cases, I have always been very involved in the children’s lives and treated them the same as I treat any other child. Yes, there are a LOT of differences, but if you just take the time to get to know the child, it becomes second nature, just as routine as playing with your own child. I have taken many a trip to speech therapists and developmental specialists and I can’t even begin to try and list them all and I understand that for someone who’s never been around a child with special needs it can be SCARY! I was blessed to be a part of Flora’s (25 wks birth) life from the day she was brought into this world and I learned the same as her parents did, right along side them, how to handle different behaviors and developments. It’s not always easy, and sometimes a melt-down happens, but I can promise you that it is ALWAYS worth it. Thank you for putting together this list. As someone who kept both children at different stages in their lives and took them out in public (accompanied and unaccompanied) I can understand the offensive behaviors that some people take when approaching these children. I have personally been asked to take the girls (on separate occasions) somewhere else because they “wouldn’t enjoy this activity anyways because it’s not on their level”. It is infuriating. But I have also had the blessings of those who walk up and ask about the problems, if they can help me with something, how they can play with them and as a caretaker for these children it was WONDERFUL to have someone offer to help, even if they didn’t know how.
Thank you for this amazing article, and for being an amazing friend to YOUR friends!
Cyndi R
As an addendum to the suggestions for helping, I would add that this is not necessarily a short-term need for these parents. What I discovered was my friends were willing to help out when my daughter was small and her delays/challenges were not completely outside the realm of what they were already dealing with themselves (e.g., a 5yo who needs toileting help is not so far-fetched when you have your own 2yo to deal with), but as she got older – and their children got older and more independent – it became more of an imposition. Instead of offering to keep her for a while, they were coming up with excuses why they couldn’t when I would break down and ask.
At this point (18) she’s fairly independent, but can’t be left unsupervised. I’m fortunate in that she’s “easy” with no extreme acute needs, but I’ll be hiring 16 and 17 year-olds to “babysit” for the rest of her life. And my friends, with children in high school and college, certainly aren’t offering to let her come hang out with their families any longer. It just further points out the divide in our daily lives that they literally don’t even think about these things any longer, while I will always have to think about them.
Aprille
There have been several other commenters saying similar things about older children! Thank you for sharing!
kari
Thank you for this! It helps to put things into a better perspective! I love the kind, GOD filled words in this post! May God Bless you in all that you do! Proclaim Him! And in Everything give Thanks!
Wendy
I really appreciate this article. I am the mother of a son whom.was diagnosed with Aspergers syndrome. He is very violent at times. Meltdowns always happened at the times I was trying to make special. He always hits, strangles, and bullies his little brothers. For my and his brothers safety, he is now in an institution. He has been there a year now, and doing ok. My friend whom is not a mother at all told me “You know you could have done more to prevent the situation you are in” Very hurtful.
Beverly
I am a Mom with a 13 yr old daughter with Downs and 4 other children without special needs. I have also worked for several years in an early childhood center in the PPCD classrooms (special needs children from 3-5yrs. old). I think everything that has been said so far is great. But, I do think it is important that everyone remember that what ever you say or do, it’s important that you are genuinely sincere. I would never be angry with someone for asking a sincere question. I would also like to remind everyone how hard it can be for the siblings. Although her brothers and sisters love her very much and are super helpful with her…she is sometimes difficult, frustrating and unfortunately embarrassing for them. One of the hardest things my kids have had to deal with is when another kid asks, “why is your sister so weird?”. We adults can handle these situations but its much harder for children. So please remember, if your kids are in class or activities with SN kids, to help them understand that it’s ok to ask questions but be careful how they phrase it. And as a final note, One of the most precious things to me is when a classmate or peer invites my Daughter to a party or activity!!
Anonymous
All I can add is then throw in going through a divorce and becoming a single parent to two children both with health issues one of which has special needs due to epilepsy. Hard takes on new meaning! Thanks for posting this!
Katie
I have to say I don’t think the gluten-free diet was the best example (as far as not trying to mention/ help). Having a sister with autism whose life was TRANSFORMED by diet (though unfortunately too late for real progress towards normalcy as she was already an adult), and having lived with violent, screaming rages, I ache for families to be set free from this. If they’re struggling, I’m going to ask if they’ve tried it or if they will at least consider it. Of course, I am coming from a POV that we are profoundly affected by what we eat and drink. This is not “judging”; it’s desiring for people to not go through the physical and emotional upheaval that our entire family did.
Sometimes there’s no healing in keeping what you know to yourself and having everyone be happy that you “minded your own business.”
However, I do agree that you shouldn’t make pronouncements on something you know nothing about. An astonishing number of people believe that autism is just a “gift,” a quirk, not something to worry about or care about preventing. I’d prefer that they listen to someone’s story before giving their opinions on what autism is. I know it; I’ve lived it…so I suppose that’s a little different.
Aprille
Let me just touch on this for a moment. (On speaking of autism and advice only):
Each of the mothers that I know of who have autistic children have spent hours and hours and hours searching possible therapies and remedies to help alleviate the symptoms of their children. They also spend countless hours in therapy every week where medical professionals and therapists are offering them advice and ideas on everything they could and should be doing.
Adding another voice to that, no matter how successful their “remedy” is or how they have seen it work in another autistic person – is at very least overwhelming. And possibly, demeaning to them personally and all of the hours that they have spent considering said options.
Every person with autism is different. Not everything that worked for you, your child, your sister, etc will work for another autistic person, and I think that that’s the most important thing to keep in mind.
I think that a vast majority of people who have a family member with autism have at least heard of and considered dietary changes. If they are not going that route, there is probably a lot of good reason why.
This is me speaking as someone who does not have any direct interaction with someone with special needs, so I cannot definitively speak for other people. This is me just going off of the conversations with my friends who have considered this option.
Karen
I love your list! I would add that for me (mother of a child with autism) something I really didn’t want, but often got, was pity. When people would learn about my son’s diagnosis and say, “I’m so sorry”, it hurt. I ADORE my son, and wouldn’t change a hair in his head! I have never been sorry my son is mine. Quite the opposite, I feel exceptionally blessed, he’s a really amazing kid! When people say “I’m sorry”, it translates to “I’m sorry your child is who he is.” NO parent would want to hear that! My son is different, he is absolutely not less! If you feel the need to say “sorry”, please be specific about what it is you are sorry about. For example, “I’m sorry things are hard for you.”
Aprille
Thank you so much for sharing. Several other moms had mentioned this but hadn’t offered anything alternative to say. When I meet a special-needs mom, I want to show empathy and let her know recognize her struggles. Which is why I think it’s easy to say something like “I’m sorry” without realizing how hurtful that can be. Do you have any other advice on positive/empathetic things to say upon meeting a special-needs mom? Something that would translate empathy for the situation while still showing understanding that she love her children?
Nicole
Thank you for this blog. These tips apply to anyone who wants to support a friend who is going through a struggle that you have not experienced. I will use these tips to support my friends better. In ignorance, I would down play, compare, and try to help solve. I see a better way to be supportive thanks to this blog.
Aprille
“These tips apply to anyone who wants to support a friend who is going through a struggle that you have not experienced.”
Yes – well said. I think a huge key here (no matter what the difficulty or struggle) is empathy.
judy
really great advice. as a special needs mum i do get alot of advice from non special needs mum, to tell u the truth it is unwanted and i’m just venting. two of the most hurtful comments that have been said to me over the past 7.5 years have been, “he will never amount to anything if he doesnt speak” from his grandfather, “i feel sorry for his older brother cause he doesnt have a proper brother” from a very close girlfriend and the latest has been “i think he’s just playing you”. these words do haunt me but i have forgiven these people. who knows, i may have blurted out the same remarks if i were not a special needs mum……but truthfully i doubt it! wonderful advice and i hope alot of people read it and take note! thank you.
Aprille
Wow I cannot imagine the wounds of those words! That is so sad!
Kimberley
As a special needs mom, I can agree with everything your saying as well.
All my kids, I have 4, did mixed preschools growing up, I always felt kids learn not just by parents but by peers…it helps with the motivation of “oh suzy can walk, let me see if I can try”I have 2 gifted children and one MRDD and on typical development, I work in the community and see so many special needs children. Its hard for me to comprehend how they get excluded…
Tryna
I am a special needs Mum.A really big thing for me is that other parents know that my child needs extra help(or supervision,protection,time etc) but they do not reprimand or teach their own child when they are cruel to my own.This infuriates me because I cannot correct other children.
Nita Bourland
Not a Special needs Mom…in fact not even a mom…infertility sucks…we are a childless couple & past the age to have children .. just want to add that we also enjoy being invited to childrens birthday parties…I work with kids at church & had special needs kids too and try helping the kids and moms..we are all in this world together and need to understand each.situation…
Tiffany
I agree completely. Thank you for adding this.
Susie Hall Keller
This is so well written! Thank you for sharing…I didn’t have time to read all the others posts but one thing that is still very important which you touched on in a different way… Our special needs kids/all our kids, need/want/desire friendships. We need to help create them. They will be different for everyone, embrace it.
Our attitude makes a difference too. When we had our daughter, we Never said WHY US? or WHY ME? We said, why not us? There will always be persons with disabilities in this world and we feel so Blessed to be the parents of Laura. God saw our hearts and placed her in our care. Our goal for Laura is the same as for our older daughter; for her to live her best life possible, whatever that is for her.
We love questions, and people coming up to ask us “what wrong”. I say nothing is wrong with her, she is just as GOD created her. She just has a few obstacles in her way that she needs help with. We are pay if forward people. If I can educate someone who doesn’t know anything about our daughters disability, I have done her a positive service. I have brought insight to another individual. While our life is not always easy, it is possible.
Kerri Wilkening
We have a special needs son. He had a stroke in utero. He’s now 8. If you met him, you wouldn’t be able to tell that he was “different”. That’s the rub. He doesn’t “look” different. I’ve had well-meaning people say, “Isn’t it a blessing that his disability is so mild that he looks like all the other kids?” What most don’t realize is all the therapy he’s been through and continues to do so he could reach that point. However, with every growth spurt, his life changes, and we have to find ways to adjust along with him. I wouldn’t change him for the world, though. Thank you for your article and starting this conversation.
Deb
I have a nephew that is autistic. He is 24 now. He is so sweet and happy and is so loved by his family. He has been a blessing to all of us. My brother and his wife had a difficult journey but he has blessed them and us. He is a joy. He loves his family. You would never know by looking at him that he is special he is so smart and a whiz on a computer and games. God Blessed us with a wonderful young man.
Anonymous
We have the same “problem”. Comments like, “but he looks so normal” Can be so irritating. It does make you feel like others don’t believe the diagnosis….
Cindy Cook
My son is 23 and on the spectrum (formerly Aspbergers Syndrome). And he is so smart and loving and seemingly (normal). That is one of the heartbreaks of it, they seem so close. When you are close to someone who is on the spectrum you can see how different they are and they are aware of it. My son told me a few months ago, and his voice was filled with the pain of years of struggle, “Mom it’s sooo hard being different”. Tears welled in my eyes, even I can’t know how it feels to be within reach of a normal life. To have people look at you like there is something wrong with you after you have struggled against all the stimulus that assails you and was proud that you managed to deal with it. I wouldn’t trade my wonderful son for anything, but I would have given anything to have saved him from the struggles he has faced his entire life. Next time you all see someone who still lives at home in their twenties or has trouble getting a job, don’t automatically assume they are lazy or just don’t want to do anything. My son is currently in a vocational rehab program that will train him and teach him job skills. I now have hope for his independent future, but will stand by him as long as he needs me. Just think before you judge..
Anonymous
As the aunt of a child with autism (and as a person wanting to know how I could be of better support system to my sister), I think this is cool. Thank you.
Don’t forget to include someone with autism. It sucks to see siblings getting invited but an autistic child being left out because people aren’t sure how he will do. I know the anxiety that comes with those situations, but his parents will be just a phone call away.
anonyous
I agree with the point that some “special needs” kids don’t look different, but there are so many struggles that we go through behind the scenes. I have a special needs son, who is now 16, that may not appear different in the public eye, but has had an abundance of struggles in his sixteen years. I think sometimes, that is harder on the parents, because people never see you as a special needs mom.
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Sabrina
What a great post. I didn’t read the other comments but with having a child with special needs, I would want to say, be careful about praying for healing. Or at least telling them you are praying for healing because their child is a gift from God as well as yours, God may have intended this child to be the way that they are for a very specific reason. Some People with special needs that know Christ have an amazing and special connection to God in ways we don’t understand. God may have given them to us to teach us something we have missed or forgotten, like having a child like faith.
Thank you for this blog, I will be sharing it. 🙂
Anonymous
I think the opposite is true also. Just because some find strength in God others are angry or don’t believe at all. The thing I hate the most is when I am told ” God, doesn’t give us more than we can handle.” The truth is I can’t handle my kids disability, I love him for everything he is and all that he can be but I would give my life for him to have a voice or not struggle for every day needs. Just because I have read and learned everything I can to help him doesn’t mean my heart will ever “handle” the fact that most daily life skills are a huge struggle for him.
Janet Grisham
Carrying the Wounded
I know this poem I’ve written
is going to make you wonder
where I’m coming from
if some of my thoughts have gone asunder
I’ve been told in good intent
that you’ll be given no more then you can take
that’s something I’ve tried to hold on to
but the next step I cannot make
There comes a time and place
when you just don’t have the strength
you’re too far down and weak
getting back up is a waste you think
too much has been thrown at you
with no time to recuperate
to get up just to be knocked down again
is an action you just can’t take
You’re weak and cannot continue
the ones close to you can see
the pain is way too deep
their strength is what you need
So they lift you up with love
showing tenderness and giving gentle care
tending your wounds that bleed
and letting you know that they are there
When you slowly open your eyes
and see the help you’ve received
they carried you on a stretcher
your strength through them increased
You then are able to make an effort
to move forward and the challenges meet
with help standing beside you
you can overcome that feeling of defeat
Janet
Cathy
What a wonderful article. I totally agree with the last two posts; The one from Sebrina 8:20a,m. today, Jan5, 20014 and very next one by Anonymous also today at 2:27p.m. One of my kids put this up. She is an ABA teacher and new mom. I am a nurse who has always had an Interest in ASD for no particular reason. Those last two post go for anyone with any special need or condition.
Katrina
The words “God doesn’t give us more than we can handle” are not found in the Bible. I too am a special needs mom and I correct people when they tell me this great-sounding “lie”. The truth simply stated is that God graciously gives us all more than we can handle so that we will turn to Him and find that He is more than enough for the challenges. When people say this to me, I hear their inner thoughts: “wow, am I glad that I’m not strong enough for that challenge. note to self: don’t get strong or God will give me a special needs kid!” LOL. The apostle Paul says it well in 2 Corinthians 12. When he begs God to take away his chronic problem, God answers, “Paul, my grace is all you need. My power is strongest when you are weak.” My daughter is 14 and this past year I have grown to thank God for her disability and live out of that spot, even though it is incredibly difficult some days… Blessings
Dawn
Thank you for your posted words here today, Katrina. I kind of needed this (today) in a grander scheme than just these threads. Please know you sparked a revelation that made someone else’s day.
cassandra
Many people do not know that there is a big spectrum for autism. I have 3 kids and 2 of them are special needs. my son who was just diagnosed bipolar…which all symptoms could lean towards having another diagnosis. The doctors are wanting me to test for autism. He was deaf at age 1 and now at age 6 is in the normal hearing limits. He did not speak till he was age 4. My daughter I didn’t want to believe there was anything wrong with her but at age 2/3 she was bouncing off walls, climbing the stove, climbing counters just making everything unsafe for herself. I took her to doctor and they said she is adhd put her on meds calmed her down just a little. Took her to see a psychologist where she was diagnosed (IDD) also known as mentally retarded. I also have a son who is 10 who is “normal” and craves attention but most of the times it is in the wrong way. I have asked some friends to please take my son with you on to games, six flags, fun things that he can do. I would pay for his ticket and yours. Nobody has offered to take him with them. I am waiting on big brothers and big sisters but since there is a shortage of volunteers I am still waiting. Can’t wait to find a friend that will help me.
Katie
I am a college student in Defiance Ohio and at our college we have a service leadership program. The students in the program do all kinds of things including mentoring jr high and high school students. If you live near a college I would inquire there to see if they have students who are involved in mentoring programs. it could be another way to find your older son someone to hangout with like the big brother/big sister program
Tina
I am also from Defiance, Oh and as I have 2 children on the spectrum I have had a lot of information and I also know that at Defiance College they have a program for Male students (they have never done a female class for unknown reasons to me at least) who are aged out of HS but not ready to go to College or even learn basic living skills. The only other place is in a town further north from us, Bryan is about 1/2 hour away and they have a school for all ages and degrees of the disorder. My daughter was diagnosed at 15 with Aspergers after living a life of nothing but depression, and suicidal behaviour. My son was tested at 3 or 4 because he was not meeting goals and comprehensive learning. Both my children were born in Florida testing was done in Orlando where we lived. Through this I have learned to lean on folks a lot but I am still not comfortable with letting it all go but I am doing better. My son had an IEP in place when he was 4, went to Kindergarten and failed (how that could happen with an IEP is still a mystery, As he has grown I have noticed more and more signs. He won’t look anyone in the eye for more than 10 seconds, Conversations are all one sided HIS but that is all normal for being on the spectrum, Order order and more order is what he thrives on. Very intelligent if he would just be able to read. He has never gotten over the struggles he has had with this and won’t let anyone say he has a problem although he was re-evaluated and found to still be on the spectrum and fights the school and counselors over his IEP, but then again what 16 year old doesn’t fight for their independence. Other areas that can help are Central locations where the Autism Society in your area is and join up with them. Around here they have a newsletter that is mailed out about eveyr three months if I remember correctly but you can always get help at any time through the website which I think they do. It is a simple search Autism Society *in your area*. Other things to look at would be schools that are designated for Developmentally Disabled in your county of the state you live in. Even if they don’t accept students with the spectrum disorder they can certainly help with information on where to start. I am in no way trying to push anything on anyone and as you can see I am just giving a variety of ideas on what is available. Not every person has the same issues and not every resource is the right one. Pick if you have not started doing any research at the local level and move up as needed 🙂 OR choose your own path to finding resources you may need.
Anonymous
Oh my! This breaks my heart. Where are you?! I would love to take your son to join in activities I do with my two sons!
Sisterfriend
Great advice in this article – thank you! I do have a few questions however, as the aunt to an autistic child. Despite my sister being in denial to many different degrees for these past 4+ years, our entire family has gone right along with whatever and however she wants/needs – sometimes to a level that feels like we’re enabling her denial, but stunting the therapy and developmental opportunities for her child. The advice of specialists was sought very late in this process, due to her extreme denial. However, now with the recent diagnosis, the conversation and openness to provided programs and therapies is much improved, and there is wonderful progress being made. What I wonder about though are my boundaries with what I am going to tolerate. I have 2 children of my own, both in elementary school, neither of them special needs. In fact, far from it. I almost feel guilty saying things like that because it’s viewed as me bragging about my non-special needs kids – which I have been extremely careful to never do, especially in her company. But I am proud of my kids and their development, despite them not having a special need to contend with, and I don’t believe I should have to downplay their accomplishments, or just everyday praises, because it casts a shadow. Also, there seems to always be some sort of comparison, made by her, that “well it’s just like your kids” when referring to something her child would’ve done that day. The situation was probably extreme and embarassing, and I realize in her attempt for validation, she needs to pull her experience more towards what she views as a normal (which I do not believe in, normal is relative for me). But this hurts my feelings and angers me to some degree – I just want to shout “my children are not even close to autistic! Please don’t try to fuel your denial of your child’s special needs by putting that reality on my kids! It’s not fair for anyone in this situation, but we are both on unfair ends of the spectrum here!” This makes me grimace at my own anger, but this is how this makes me feel. I can’t rightfully say these things to her, knowing that I can swoop my kids up and leave this tornado, and she can’t. She won’t ever be able to leave it, and that’s what stops me. I want to continue our times together, but the more this continues to happen , the more I will pull away, out of respect for my kids confidence and mindset. I have discussed the matter of the special needs of their cousin with them, and they understand and truck right along without hesitation. I’m trying to take on this situation with graceful tolerance and understanding, but it is difficult. Feeling stuck.
Aprille
I really have no way to offer any sort of advice for this situation. I’m sorry. Perhaps some other commenters could shed some light.
Dawn
First my view point is that I am a special needs Mom (my son is Autistic and almost 15). Now, since I am unaware of your living situation, I will make an assumption, that you live close but in separate houses. I would also say that given the info in the post, my first suggestion is to seek out a support group. Whether you go together or individually, you both need them for different reasons. Hers due to the difficulty in accepting her child’s diagnosis, it’s hard. And it doesn’t get easier. She needs to know she is not alone in her viewpoint or struggles, and it can be an opportunity for her to find additional resources. You because, well you’ve come this far in asking for advice, and you have expressed concern for her and her child’s well being and appear to want to help. NAMI, has groups that cover a wide spectrum of support for families… Our area has been working to get more out there … basically the working title…’children with challenging behaviors’ it covers a whole gamet of issues. Now…boundaries for you and your children. You didn’t mention ages of children involved…hers or yours. YOU become the teacher here to your children. You have a great opportunity to educate your children on how to accept things that are not socially normal. And stand up for those who need help. You may find they do better with acceptance than you do. However…Boundaries regarding safety are very important. Some behaviors need to be tolerated cause life really is too short. ( and the child can’t help it) When you’re sleep deprived and just need to avoid a screaming match because it makes life easier… You give in…give them a corner in the kitchen and let them make a mess or bang on pots…whatever. Yes you might have more work in cleaning up the mess…but it may buy you the 20 min it takes you to pay some bills. You DON’T compromise if something is a safety issue. If the child is violent…that needs intervention and further help and advice from a physician. (Again depending on THIS child it may not be an issue, and again it may become one as he/she ages) In regards to the ‘milestones’ reserve anything more than a casual mention for your other social circles. Check out a website/blog/book…’shut up about your perfect kids’ it’s from the view point of special needs moms. And believe me…there is OFTEN a fine line about what is typical behavior and behavior of a special need child. All kids will act up and out…the difference is the frequency and intensity. (She might not understand that yours might do something in particular once a month…but hers might do the same thing daily, and vice versa… it works both ways.) And the accomplishments her child might make, might seem to you like ‘so what’…but when you work for four years+ to teach them to tie their shoes, and they just one day do it on their own…and they’re in fifth grade? It really is a BIG deal. Recognizing it is not ‘tolerance’ it’s ‘support’ . I may have gone off track a little, or misinterpreted your questions…I’m open to a discussion here.
Aprille, you did a nice job here, I think most special needs moms will approve, #6 and #7 are probably my personal pet peeves.
Steph
It sounds like all of this has happened over the last couple of years. If that is the case, then you need to give your sister a lot of compassion and understanding. Her life has been completely turned upside down and at this point she is unable to see a light at the end of the tunnel. Her hormones, emotions, and rational thinking are all over the place. Basically, she is going through a VERY long PMS and she is not rational, yet. You also need to understand that she will have ups and downs for the rest of her life, and you as her sister, need to become hypersensitive to her ‘moods’ and react appropriately. Please know that she will have periods of being your old sister again and be able to rejoice in your happiness and be there for you in your sorrows, but now her child is her number 1 and that is her sole focus. When she is comparing her child to yours, she is trying to make herself feel normal for the moment. Don’t take it personally. I often find myself comparing my child to other kids, ASD & typical, to make myself feel better about my child’s abilities. When she does that, help her see the typical behaviors in her child. Also, figure out the child’s strengths and point those out, too! When this child was born, all of your lives changed, and it is difficult for everyone, but more-so on your sister. You can go home and de-stress from your niece/nephew, she never can. She NEEDS you more now than ever!
I also recommend reading The Autistic Brain by Temple Grandin!
Susan Craig
Wonderfully written. As the mother of a 31 year old son with special needs, my greatest advice is to surround yourself with people who can/will help you. It most likely will be friends you have yet to meet. Expect to be excluded from many events, even family celebrations. Don’t become bitter, but remember only positive helps you and your child. And cry when you feel you need to; all parents do.
Merriem Franks
This was very helpful as a mom of a special needs child. Our fourth has just been diagnosed as ADHD and major issues with impulsiveness. This is not seen by most as special needs, but I assure you as the mom it is. She cannot handle things the way most children her age can. She melts in public constantly! She is hard! Because she is the baby by many years, adopted and the only girl in our family I feel that most people just look at her as spoiled and never consider the other issues she deals with. I will never look at a child throwing a fit in public the same. Now I stop and remember that there could be more to the situation than I know about.
Melodie Gingras (Melvin Johnson)
On my trip home for Utah I had just spent Christmas vacation with my grandson who was autistic so I know that there are times it can be difficult. Austin is now 9 and I received the first hug ever from this little boy that at one time we thought could never communicate. Tubes put in his ears and low and behold he started catching up with the rest of the world. I could not be more proud of all the work my daughter’s family has done plus the school district on getting Austin streamed-line into the classroom.
On my flight home there was a young man who needed a seat with his son…first announcement from the airlines was who would give up there seat to let this young mom…and child sit together for a free drink. The women that sat next to me and myself raised our hands (both grandmothers); we decided together that it would be best if she moved because of her seat location (isle seat) plus I don’t drink. Then this young man shows up with his son…having a break-down. They had gotten up at 4:00 a.m. and almost missed their flight….everything had gone wrong that day. None of the electronics that they had planned on using to entertain Elliot were charged and they weren’t sure what to do. Luckily I had my Kindle fully charged with games on it…I asked Elliot if he played piggy’s and all of the sudden he stopped what he was doing looked at my kindle and stared. The flight home from Vegas to Sacramento was quite except for those talking around us…I got to know his family and the difficulties they were having in getting Elliot diagnosed with autism. The doctor was trying to diagnose him in a room filled with little interaction; they finally found a place where they could have him diagnosed with several areas of stimulation and really see what the parents saw in their child.
When we finally landed I let Elliot take the kindle off the plane…and followed shortly thereafter…too many people and I am not as young as I once was. Just for a few moments this family was able to have a few moments of quite time…and Ben said it was the best part of the flight he wouldn’t of known what to do accept for this moment of kindness. What he does not realize from this is that Austin showed me a world that I have now been able to share with others…and that little peace and quite has taken me nine years of wondering whether I would ever get a hug from my grandson. Today I share my grandson’s story and hope that other parents/grandparents will see that all is not lost but you have to learn a whole new language in order to communicate.
D Hardy
My, what a great read! that is what is need today, for sure, as there are many of us out there. And with Common Core, those who have SN kids in school, we are having to become more of an advocate than ever for our kids in the coming years. =more added stress. So it is important for us to remain connected to friends and support.
In the early day/ years, make sure they have a baby shower, even if it is delayed significantly, and even if the baby cannot be there. They still have to buy special car seats and strollers, a crib, and a lot of other things sometimes that are NOT covered by insurance.
And by all means, do not assume they are financially ok, just because the child receives SSI. The gas to and from therapies and dr visits, and extra medication and food ( and blender for a specialized diet) eat away at this very quickly. The parents don’t get meals in the hospital if their child is strictly tube fed, or NPO. I lived on coffee and granola bars, because a) I couldn’t leave him alone in the hospital bc he was so small and fragile; and b) hospital food is expensive.
If you are coming by to visit at the hospital, call and ask if we need something. Food is always welcome, as we have to eat cafeteria food often over and over again. (Think of when you were a child and Mom packed you a bologna sandwich, AGAIN. Sack lunches are fine, but they do get old.)
A shoulder and a hug goes a long way. So does a word of encouragement. I never had a lonelier time than when i lived with him in the hospital for 2.5 years. Yes, I had the Lord, and praying friends. But it’s hard not to have get discouraged or disappointed when one’s extended family only shows up at the hospital when the family is called in to say goodbye, once again. And then you don’t hear from or see them for a couple of months when the family is called in again. It’s not what my family was expecting, but we ( my husband and I) also had to realize our expectations were waaay too high. We assumed bc we had helped others out in their situations, that they would in return be there for us. The typical ” church” way, right? Not so much. Once we lowered/ erased our own expectations, things seemed to get better; but then we also just had to cut off the toxic, negative, judgmental people in our lives, even if that meant family. My own nephew (3) said he didn’t want to be friends with my son (6), because he “talks like a baby”. Never mind that he can read on a 2.7 grade level. Sorry, i don’t mean to ramble on. I am so glad you are genuinely interested in your friends’ children and lives. We all need a voice, as most of us are so busy voicing for our children’s needs, our own needs rarely get noticed or taken seriously. We may look strong on the outside, but only because we have to be. inside, we long for connection and acceptance, for ourselves and for our children. Thank you for the great article!!!
Marlene
Very well said. I can relate to everything you posted
Veronica
Thank you for this! As the mommy of a moderate to severe autistic 9 year old boy (who was born at 25 weeks gestation and has multiple diagnoses) and a 7 year old typical girl, I have read lots of articles, etc. This is by far one of the best posts I’ve found on what you CAN do. Some of this brought tears to my eyes. You are a great friend and I am so glad that my fellow special needs mommies mentioned here have you! 🙂
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Donna Z
I love # 10!! Please understand….Autism does not have a look so never underestimate when a child is throwing a tantrum as it being just that. Refrain from using the statement,”oh, he/she doesn’t look like they have autism”
sherry
As a special needs child’s mom, it is so difficult sometimes to hear about typical children’s developmental progress. I know this sounds so selfish but it is regretfully how I feel. I do a good job of hiding it. I contribute by saying how wonderful for the person but on the inside I am screaming and crying…why can’t my jessie be doing that and I feel so envious! I pray to not feel this way but it happens over and over.
Anonymous
So glad I’m not alone in this. Facebook is the worst place for that!
Elaine Sims
As a great Grand-mother of a first one, I can relate to this. We luv her very much & thank the Lord for her everyday.
marcy
My 11 yr old son is non-stop attention seeking. The holidays were hard with extended family, and not only was there visible frustration directed at him or as a result of his behavior, but we were also excluded from seeing some family we haven’t seen in a years. Not having a big family makes it harder and I try not to be bitter or hurt. Each time something like this happens, we just wonder what’s going to happen next. However, today at our new church’s excellent special needs program, a lady told me she understood, gave me her card to call her whenever, even unbuttoned my coat button I was fumbling with. Intimacy like that has been absent from my life for decades and I’m hopeful that as I admit that friends will need to take place of family~ in a way~, God will show us our new ‘family.’
Aprille
I think churches that have programs like that are simply amazing!!
Kathryn
My advice as a special needs mommy… don’t minimize their issues. Chances are that if a SN mom is complaining or venting or crying to you they trust you to not judge. SN moms are usually optimistic, positive, and patient most of the time but they (we) deserve to have breakdowns too. Yes “it could be worse” but the reality is thst what we deal with and whst our children deal with is OUR worst and very challenging. So don’t miminize our issues or our child’s issues. It’s isolating enough so just let us vent or cry and be there for us during our rough moments. That is whs t we need most.
Marlene
You hit everything spot on. I am a mother of a special needs child. Id give anything to have just one friend or family member to be as caring, involved, or just to be there from time to time. Your friend is very lucky to have you in her life. Thank you for writing this.
Gidget
I loved reading this….. It really hits home and makes me feel better knowing im not the only mother with a sn child that has these feelings also. I have a 7 year old Autistic son, who also has BMD ( Becker muscular dystrophy) & ADHD …..The endless night that my son is up with NO sleep ( which dont seem he requires) , eating everything in the house all night, the days that every hour is a melt down, the emotional detachment, The ABA thearpist at my house every week, & PT ( not to mention I have a 16 month old with sn as well that has a OT & PT at my house every week) …. the days at school he comes home and ask me why he has no friends and hes “different” its heart breaking being a sn mother. Having to always advocate for my son at school because no one else will and isn’t it their job to HELP ? I feel like I talk and talk and talk ….and NO ONE listens @ the schooI… I could really scream, cry, stomp my feet and just breakdown. I always try to be so strong an positive and encouraging( we have to be) but there are somedays I just wanna cry my eyes and have someone who acutally UNDERSTANDS where im coming from and not hear, “yeah my child does that too”.!! REALLY?>! OR well I do this with my child when he or she does that and this always helps. They have not a clue!
I do feel very BLESSED to have 3 beautiful children & im lucky to be their mother. I dont want to sound ungreatful by anymeans…. my children are my world and Im glad God chose me to be their mother. Even tho my days are long and nights seem endless, I wouldn’t change it for anything in this world. Im glad someone made a site tho for us SN moms. maybe more people will read this and understand we have feelings and needs just the same as you with “normal” children and sometimes its better to just listen or let us cry or breakdown. and dont look at us or not invite us to birthday parties or events because your not sure of how it will go or how our child will act. thats unfair and mean to us and our children. we all want to be accepted.
Wanda Murray
Beautifully said. I am the grandmother of a special needs child. Thank you for doing this. I agree with everything you wrote.
Marty
This is such a great post! What a thoughtful and caring friend you must be! I have a 27 year old son with Down Syndrome, and I agree with everything you’ve said. These are great tips for encouraging our special needs moms. AS a special needs mom, the thing I can give most to others…is grace. People have said some really insensitive things to me regarding my child…and even tho I should know better, I’ve said some insensitive things to others. I’m sure I have. We all make mistakes. My mantra: MOST PEOPLE MEAN WELL.
Thank you for this article. Bless you.
http://martysmoosetracks.blogspot.com/2013/03/most-people-mean-well.html
Anita
I am a grandmother with a 7 year old grandson who has adhd. My daughter and I never get to ‘really talk’ to other mom’s who have a child with ADHD. If you are one of these moms, please let us know.
Kimberley
1 has ADD 2 has ADHD…and one of them who has ADHD as way more then just ADHD, shes MRDD and has multiple health issues. My son is not ADHD
Jeanne
Thank you for this, it’s very helpful. My eldest child is mildly Autistic, so I don’t think of him as high special needs, but rather as in need of moderate understanding. I try to empathize & support my mom-friends, as we all have struggles, challenges, & doubts; special need kids or NT.
A behavior that bothers me about some parents is apologizing for your child’s uncontrollable behaviors. Unless your child physically hurts another, then I don’t think one should apologize to friends/public. I’m not sure of that’s coming out the way I intend, but the way I see it, a child can have an outburst, tantrum, sensory overload and it’s okay with me & should be with most. If you apologize, you are accepting responsibility for a situation you cannot prevent or control. You are wonderful, loving & caring parents, however you cannot control all of your child’s behaviors. I hate seeing parents who struggle with feelings of inadequacy or failure or guilt because their children have outbursts. Love yourselves as you love your children! If people around you give an evil eye ignore them and know you are doing your best & your child is loved by you.
I also wish strangers would stop being so judgmental. Adults forget about all the unseen mistakes they make, I guess.
Love and best wishes for all parents & families who are raising children NT or atypical.
Sarah
Have any of you ever had your special needs children’s yeast levels checked? Yeast overgrowth, caused by eating foods with antibiotics in them, taking antibiotics, eating sugar, etc…caused ADD like behavior and autistic behavior. It is quite easy to heal with a prescription anifungal and some pro- biotics. A simple stool test will tell if there is an overgrowth. I have seen several kids “diagnosed” with ADD and ADHD have their diagnosis dropped after the yeast was killed. It’s pretty amazing!
I am a special needs Mom too. My son has vaccine induced epilepsy since age 2 ( he is now 12)
and is on the “spectrum”. I always like to share info that could possibly help another child with special needs, as my friends have done for me.
I once had a “friend” tell me I was “crazy” for not vaccinating my second born child…this after knowing the damage that vaccines did to my first son…..wow. I will never forget that! I pray I never say anything so thoughtless and hurtful to anyone else!
God bless all of you and your children.
Julie
My 7 year old daughter was diagnosed with type 1 diabetes last March, until then I was not a special needs Mom, but I am now. I have been so so grateful to the two mothers who have invited her over for play dates and assured me they could manage her diabetes for a couple of hours. Everything you have said here is absolutely true. Please invite her to the birthday parties, even the slumber parties. We’ll figure out a way to make it work (even if I have to sleep over too!) please include my child. Just ask me. Don’t leave her out, it shatters my heart.
Marie
I have 5 boys and an angel in heaven. Of those 6 boys, 2 have moderate to severe special needs, 3 have/ had mild to moderate special needs and one has mild special needs. I have spent what feels like half my adult life at children’s hospitals, doctors offices and therapy appointments. I’ve cried in bathrooms (public and at home), in my car, on the floor, in bed as I try to fall asleep. My one piece of advice that was not in the blog post is that my mom friends who have “normal” kids should feel “allowed” to have hard days. I don’t have a monopoly on hardship. Everyone’s pain is relative to their own experience. I had a couple friends who got in the habit of following any vent to me with “But I’m sure that’s nothing compared to what you’re going through.” For example. “The baby got up four times last night. I’m so tired. But I’m sure you’re more tired than I am.” I want my mom friends with “normal” kids to feel like they can vent to me without guilt. That’s what friends are for. It’s not a competition. We can both support each other in our hardships- whatever they may be.
Aprille
^^^^ I so love that. I know as a mom of a NT child, I’ve said things like that to my friends! It’s honestly a relief to hear that!
Lizette Cruz
At our multi-cultural church I am proud to say that we have several special needs children, and for congregation they are truly “special”. From giving them a main speaking part in a play even if we might have to repeat so they can be understood to receiving their prayer request in the middle of the Pastor’s message, with a smile, we always include our special needs kids and if necessary adapt situations so they can participate. We have all kinds of special needs kids, from medical needs, developmental needs, emotional needs, to cultural, and economical needs ( these too cause issues in behavior, etc)…. We try to take them all into consideration and meet has many needs as possible while still including everyone. We can’t always meet every need, but we sure try! I am so proud to be part of a church who does not see special needs kids as a problem but a blessing. In fact that goes for adults as well. As we have them in adults as well. We rejoice as a congregation when a parent shares their special needs child reaching a milestone that they might have thought un reachable, and we don’t compare our kids. We teach all of kids or we all play together, or we don’t play at all. But we usually don’t have an issue with it. It is possible to find families and churches and communities that understand. I am proud to be proud of one,
Aprille
That is sooooo fabulous!!!!
Mary Gardner Martin
That is an awesome church. Ours is becoming more and more like that. We can do this!!!
shylean
My son has spastic quadriplegic type cerebral palsy… He is the light of our lives and in his short eight months has brought so much love to our lives… often people will say “he looks normal” or “his grip is great” … I am almost always hurt by these statements… OF course he looks normal, he has a brain injury… and his grip… that’s because of his condition… He can’t open his hands. I rarely say much and I think people don’t understand that, I hate to point out the things Jaxon struggles with though. I don’t know if people could really understand the amount of time us special needs moms spend doing therapy and how much trial and error we go through… heck, I’m not even sure I’m aware of how much time I spend doing these things… All I know for sure is my beautiful little boy deserves every second of it. There is nothing and no amount of time we wouldn’t give him.
Sheila Temple
as a special needs mother of 4 chinese children, I found my outlet in writing about our experiences. It has been therapeutic for me and the new normal is being experienced here for sure. My children were adopted at 3, 12, 6 and 12 , respectively from 2001-2006.. Our special needs include bi polar, incontinence, Townes Brock syndrome, VSD ASD and PDA heart repair, bi lateral kidney, ADHD, Autism, etc. If anyone is interested in reading our family story feel free to message me at templehome@sbcglobal.net and I can give you book details–not trying to sell books , just saying writ in helped me and I am learning the new normal isn’t as bad as I thought it was going to be! Blessings, Sheila Temple
DebbieLB
Bless you! This is great advice. I do not have a special needs child but my twin boys have grown up with a severely autistic boy in their class from kindergarten through seniors in high school. They have accepted him and his differences from day one. The entire class has learned that he likes hugs, but he has to initiate them. That he is listening even though he won’t look directly at you. And his feelings are important. I have learned his mom is a beautiful woman who does her best for her kids. I do not understand all her struggles but she is my friend and I try to support her through them. Thanks for the reminder!!!
Mary Gardner Martin
http://iconobaptist.wordpress.com/2014/01/06/when-people-with-ocd-feel-compelled-to-interrupt-ocd-5/
I loved your post and reblogged it on Iconobaptist. I am not sure how to do this, protocol-wise, because you certainly don’t owe any attention to my related blog, but I have posted the link, above, to a series I am doing right now, as my son with OCD is home from his special needs college in Wisconsin. I have noticed a lot of new things and am writing on OCD (this is the 5th post this week) to help parents who face this to dialogue with each other and with their children who have OCD. We can find a way to help them!!!
ashley ruby
This was an amazing blog to read i was crying the whole way through it and 8 and 10 really hit home for me. I have 2 special need boys ages 1 and 2 that have been diagnosed with a very rare genetic condition, but i wouldnt change them for the world, they are truly a blessing.
Jenn
This was a great blog. I love how you made your points without making people feel stupid about their mistakes. So many blogs about “what not to do” are too harsh. And, I like how you gave very practical suggestions. I would point out though, that depending on the mom, sometimes bringing up an idea you’ve heard about or something that worked with your kid, might be welcome. The thing is to do it in a non-pressure way and to be aware, like you mentioned, that they’ve likely already tried it. Every now and again, though, a “Hey, I saw this website and thought the article was interesting” is helpful though.
People wanting to know about my kids’ problems (I’ve got to special needs girls with completely different problems) who don’t mind if I just completely unload, are such a blessing. Sometimes its nice just to cry on someone’s shoulder about how frusterated or overburdened I am at the moment. It makes me feel like people “see” me and I’m not so isolated from the rest of the world.
And, the prayers! Oh, yes! We need those especially! One lady at my church, when she hears something hard is going on or something good, she takes the time to pray right then and there, and it just fills me with peace.
Aprille
From many of the comments, I have gathered that on this issue there are varying opinions and sensitivities among special-needs moms. Some welcome advice a lot more than others. I think that each person will have to gauge their standing with their friends to see how open they are – and above all, approach the issue delicately. If you want to offer advice: do it gently, without judgment, affirm them as the parent who knows best, back off if they say no or that they have already tried it, etc.
Laura
I have not read through all of the comments, so maybe someone already mentioned this, but I have always heard to refer to the CHILD first as a person, “a child/son/daughter/boy with special needs”, NOT “a special needs child” , a “son with autism”, NOT “autistic son”, a daughter with Down Syndrome, not a “Down’s girl”. Everyone is a person first, not a disability. I’m surprised your friends didn’t correct your references to “special needs child” and “special needs mom”. I am a proud mother of a daughter with CP and Autism, not an Autistic, Cerebral Palsied kid.
Aprille
One other person did mention that. I did understand her reasoning, but after talking with several other moms, it seems not every mom in this situation feels the same way about the terms I have chosen to use for this post nor makes distinctions about the semantic difference. It is not my intention to be offensive or cast a label on any mother or child. I recognize that there is so much more to both the mother and child (a point which I address in #2 of the post – if you will take the time to read it again). I use the term “special needs mom” or “special needs child” for brevity’s sake.
Personally, I fail to see how saying “special-needs mom” is a label. When my husband was in the military, I called myself (and was called by others) a “military wife.” Was I a normal wife who had normal struggles? Yes. Did I let that define me as a person? No. Did I take offense to the term? No.
I’m sorry if you are offended by the term, but based on the outpouring of comments and post fews from thousands of other moms, I think that this offense is not something that ALL other moms of special needs children share.
Dawn
When an article like this is directed at a wider audience, the terms used here are appropriate and not offensive. ‘Special needs mom/child’ allows one to encompass multiple disabilities, and on the contrary Laura, it is widely used. Yes individuals are people first not disabilities first, and when in a one on one conversation about a specific individual I might agree with your point of view, but when I talk in general terms and don’t want to be specific with someone, about my sons disabilities, I proudly use / say ‘I’m the mother of a special needs child’ and I accept that by default it makes me a ‘special needs mom’. And I’m not offended.
Aprille
Thank you for your perspective!
Anonymous
Totally agree with your point here
Kay
I am a grandmother of an 8 year old moderately severe autistic grandson. My daughters best friend has a severe autistic 14 year old son. It was such a shock to us (the grandparents who are also best friends) that both our daughters have autistic children. It is very hard to communicate about our grandson’s victories when there has been very few victories for our friends child. The most informative part of this discussion to me is that if you want to support someone you know with a special needs child is to include them. Never being invited to the birthday parties etc is very hard to understand. Please speak to your children about special needs children and help them understand that these children have many of the same hopes and dreams of quote “normal” children. Acceptance is more important than you realize. If you raise your children to accept and love the special needs child, you will raise a more loving and happy child and you will be surprised what they learn from the special needs child. My grandson has probably taught me more about love and kindness than anyone. I love him dearly and he is the light of my life.
Alicia Lynch
Thank you so much for this post. My son has Hydrocephalus due to a stroke In Utero. The doctor’s never expected him to live, but he is now 2 years old and doing things we never expected he would ever do. He is about a year to 6 months behind kids his own age. Walking and talking are our main struggle as we have three kinds of therapists come in several times a week and he is watched by a nurse Monday through Friday, while my husband goes to seminary and I work.
#8 hit a cord with me. When my son does something new, I rejoice and let my friends know that he is finally over one more hurtle. And yet the hurtful comments I get back crush my desire to tell anyone what awesome new thing he did today. I want him to be able to walk by himself because carrying a child over 25 lbs is hard especially when you are pregnant and shouldn’t be carrying him. I want him to talk because I want to know where he hurts and what is wrong when he cries. I want him to be in the right room with kids his age at church rather then in the baby nursery where babies are just learning how to crawl. And yet I get comments about how I shouldn’t wish my son to walk or talk yet because that will cause a whole lot of new problems.
All I really want to know is my friends will be there praying for me, ready to help me if I need it, not telling me I shouldn’t “rush” because I will never get it back again.
Thank you. I needed the encouragement from this post.
http://www.facebook.com/rylenlynch
Aprille
That’s so sad that people give you grief about rejoicing over his victories! That’s just wrong. I’d say rejoice away!!!
n mcconnell
there is one suggestion i would add to your list. we have a large family, and our seventh child has down syndrome. she is eleven now, and has recovered from all of her serious health issues, but for the first four and a half years, her health was all we focused on. it was very stressful and difficult for all of our older children, they were pretty much left to fend for themselves, for most of that time, as well as being called upon to do things that many adults would run from — such as helping to insert an ng tube, emptying a colostomy bag, changing it, if it started coming off while i was at the grocery store or something– which was no easy feat since both sides of our down syndrome daughter’s intestines had prolapsed and she went from having 3 inches of her intestines hanging out on her abdomen, to having 16 inches of it exposed. these difficulties, of course, eventually led to emotional problems and depression in our two oldest daughters.and that caused even more difficulties, trials, and exhaustion. but my point is that people would ALWAys say to me ” oh, how is tabetha doing”. so i would tell them exactly what her condition was, and if it was worsening, or getting better, but when i looked at them, i could tell that they didn’t believe a single word i was saying. it was so bizarre, so unimaginable, so unbelievable that they didn’t actually believe it. they truly thought i was just making it up, or at the very least, grossly exaggerating.
so my suggestion is that, even if you personally can not fathom, and have no concept at all, about what is entailed in the ‘special’ needs of a child, do not assume that because it is not in the realm of your possibilities, that is not in the realm of anyone’s possibility. if the parent of a special needs child is telling you how difficult things are for them — because you asked– then do them the courtesy of at least believing them, even if there is nothing you can do to actually help them. (that was another issue our family faced- people asking if they could help, then not even believing that we needed help– but that is another story. ) just don’t lower your eyes and slide them back and forth, refusing to acknowledge what is being said to you. if you really don’t want to know, then don’t ask!!
Mary Gardner Martin
I have enjoyed this post since it first came out and shared it at least once on my own blog (our son has autism). A few remarks that are general responses to some of the comments:
1) We special needs parents (I used that phrase purposely) can get awfully tired and can, in turn, be a bit thin-skinned. Even though I have often been in that place, I see the inconsistency of asking people to reach out to us in help and then combing through their every word, looking for reasons to be offended with them. If someone calls my child “autistic” instead of “a child with autism” and still is offering to help me, I am not going to give them a lecture about using the wrong phrase, ya know . . . Or if I do, I should not be surprised if they never offer to help again. There is such a thing as graciousness and we all need to exhibit it as we live and learn.
2) I did not realize that my sister’s own defensiveness when I compared my son’s milestones to her children’s had to do with the fact that her son was disabled in a different, more mild way, and her other two were “normal” (whatever that is). I am thankful for the mother of “normal” children who expressed that that could be offensive, because she could be my sister. I don’t see my child as being a member of a different race than my sister’s children (I see a child first, then a disability) so it never would have occurred to me in a million years that I would offend anyone by mentioning my son and their children in the same breath when discussing developmental milestones. I understand now . . . although I still don’t in some ways. But I can keep it in mind when speaking to my sister. People can be thin-skinned for all kinds of reasons and it is not up to me to either purposely offend my sister nor to try to fix her when I disagree with her ways.
3) Some of the suggestions that may work for one child don’t work for others. We are all different people and so are our children. I think we can probably do better to avoid words like “easy fix” when discussing controversial topics like yeast overgrowth. Treating yeast has helped many people and may have cured a few, too. However, if we speak of it as an “easy fix” we tend to discourage people whose children it did not help. Or those who are using totally different therapies, working closely with their doctors. For, if anything was an “easy fix” for autism, you can bet we would have already had that published in medical journals everywhere (and please don’t counter this with a conspiracy theory . . . nobody is going to sentence 5% of our population to lifelong autism in order to suppress a drug they don’t like!).
Cradle Rocking Mama
This is so perfect! I consider myself a SN mom, because my sons have severe food allergies and intolerances. While they are neuro-typical children, their food obstacles are severe and life-threatening, and have proven a huge obstacle to them living life as “typical” children do.
I love my sons and they are my whole world, but being excluded from things as often as we are is hard. It is very isolating and lonely. I’ve found a fantastic support group online, and they keep me afloat. But I wish I had more of my old, regular friends that would remember I’m still *me*, and would call just to chat, to vent about normal things (bad day at work, mad at husband, kids being a pest, etc.). I have all those complaints, too, so I would understand and appreciate the feeling of being, well, “normal” for a while.
One thing that I would add to your list if I could would be to avoid complaining about ANY special prohibitions or rules that your “typical” child must endure at school, church, or elsewhere because considerations are being made for SN children. I’m sure no one would do this to a friend who is a SN mom, but this should just be a general ‘avoid doing’ thing. You never know who might overhear or see your comment written, and nasty comments about how hard it is for someone to pack their kids lunch because they can’t send peanuts or dairy because of “some kid in the class” cuts like a knife. Not sending those foods keeps my child alive! Hearing people say “screw it, I’m sending it anyway” terrifies and hurts me to the core. Most of the time, these comments are not directed at me, but I hear them nonetheless.
Anyway, this was beautifully written and you are an exemplary friend! Hugs!
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Lawna
As a mother of two children with special needs I also wanted to add that I get judged allot for wanting to have more children, people have commented that don’t you have enough on your plate and other such comments. Just because my children are special needs does not mean l cannot have a large family and still take care of my children with special needs. When I speak to my friends about wanting another child, this is a great moment that reflects how strong I am feeling. I want someone to be excited for me and my husband not worried that we won’t be able to cope.
Cheers
Aprille
What a great perspective. I have heard the flip side from other moms that they have been pressured to have another child but aren’t ready or willing because of the needs of their first. We definitely need empathy, understanding, and a healthy dose of mind-your-own-business all the way around!
Anonymous
Thanks for all the posts. As a mother of 3 autistic children and a stepson with FAS, I totally agree with many of the posts. Concerning inviting special needs children to parties or other similar events, I would offer another suggestion: when inviting them offer that a parent is welcome to attend as well. When my now 9 yr old was in kindergarten, he was invited to a neuro-typical boy’s birthday party. When I called to RSVP, I asked if I could stay with him as then Icould help with communication problems, and be able to take him home early if the need came up. He was so excited to be with his peers and they seemed to enjoy his presence. I was able to advise what he would and would not eat, and take him home when he got overstimulated.
Dawn
I did this as well when my son was invited to parties. You can’t always predict ahead of time if a situation will be too much for your child. My son also has serious communication issues, so it was almost necessary, especially until the other parents got to know him a bit better. Also, the parents were always receptive to having an extra hand, if my son didn’t need me, I would ask what I could do to be useful. I would caution however as they get older, be aware as to whether or not your child minds you being there. Some SN kids are more aware than others and it matters to them how they appear to their peers. The superficiality of that statement aside, the goal being to aid them in building their self esteem, and with any kid, they can’t test the waters til allowed to swim.
Heather Thorup
Loved this! This is a quote I found on Pinterest that I love: “I am a special needs parent. I have special needs. I need you to be there for me. I need you to be there for my family. I need you not to pity my child. I need you to teach your children acceptance. I need you to listen when I need to talk. I need you not to judge me. I need you to understand why I don’t always call. I need you to be my friend. I am a special needs parent. I have special needs.”
I’ve seen many other quotes and stories, but that what makes the most sense to me. Also, be involved. I appreciate when people follow up on hospital visits or appointments. When people read my blog about my disabled son and keep in touch. I also have a daughter and am expecting again, but I want my kids to have multiple siblings regardless of my son’s challenges. All I can say is…kudos to all us special needs parents. You are amazing!
Dawnelle Brown Glass
The most helpful thing anyone has done for me has been to remind me on the frustrating days, how far we have come. Sometimes I get so bogged down by the therapies and battles with the school, court (we foster) behavioral challenges etc. I forget that this was the little boy that the case worker told us was largely nonverbal and would never be able to communicate or participate meaningfully. He now speaks in sentences and participates in regular ed 1st grade with the help of a classroom aid… more in 4 years than some thought he would achieve in a life time. It means so much to know that people have noticed all the work he and I have done together and that although progress is slow it is there and it is worth every bit of the struggle.
Another one is not to act shocked if I have to use some less than traditional discipline. My son reacts to time out like some neuro typical kids react to a new toy. So we make him bear crawl (not in public) until he’s ready to cooperate… and he reacts like most kids would to being sent to their room for time out, but when he’s done he’s calm and ready to work/play nicely etc. Trying to make discipline fun by cheering for him, encouraging your kids to do bear crawl races next to him after he (insert some unacceptable behavior here) or pitying him only undermines my authority and wears out my already slim array of effective discipline even faster.
I would be the exception to offering advice. Everyone is different and after all the many hours and days of research I have done, at least half of the strategies that work for my son, if not more have come from caring friends, teachers and family members. I would much rather have less than helpful advice than flounder around in some dead end because someone was afraid to hurt my feelings, but I have thick skin and tend to surround myself with other parents who have been down my road. Just be tactful and don’t push the issue if your friend has already tried it or isn’t interested.
Dawnelle Brown Glass
This was a GREAT post by the way!!!
Phyllis
I am a mother of two special needs kids and I wanted to add that I need to feel like I am contributing to the friendship as well. I appreciate when friends ask me for help as it makes me feel normal, valued and respected rather than pitied. Also, take cues from us. There are some days we want to talk about special needs ad nauseum and other days we want to talk about everything but special needs
Anonymous
Also forgot, please pay extra attention to our typically developing kids or offer to watch our special needs kids so that we can devote time to our typical child(ren). Our special needs kids get attention due to their needs and overcomensation by strangers. My ten year old typical child is often completely ignored and I know that people don’t mean any harm. My friends and family go above and beyond to fuss over her for which I am so grateful!
Erin
This was a good list! I am a mom of an ADHD child with anxiety disorder. We deal on a usually daily basis with dozens of explosive outbursts of frustration and anger. One of the best points on your list was to not give advice. It truly does make it awkward and is extremely hurtful when I have to explain that we tried that and why it didn’t work and I hope to God they understand and don’t make me feel like a failure – because I do that well enough on my own. The other point I liked is to pray for their marriage. It is such an extreme strain on a marriage to have a special needs child. The constant crisis mode and mood of tension in my home is so hard to overcome with my husband – and agreeing how to handle our child is tough. Offering to help them go on a date would be stellar!
The other thing I would add is to sympathize. Honestly, hearing from a good friend who knows my family well say that it must be hard and even cry with me means so much. Agreeing that I’m on a tough road and not every mom is dealing with this – I guess validating my struggle is so key for me. When I’m in my own world, I’m so tempted to feel like my problems are my fault or all in my head and it’s so good to have my best friend tell me she admires me, that I’m a wonderful mom to my hard kid, and to keep going!
Anonymous
Ugh so agreed on both these points. Remind us to put time into our marriage so that we can be better parents!
To the pp who is insulted by some of the terms, this is the reason people are sometimes afraid to approach and befriend parents of special needs kids. As a mother of two boys with a fatal disorder I am grateful for the friends who take a chance all the time. They have all said something insensitive at one point or another but their intentions are only good as are the blog author’s intentions. I don’t find anything about this post offensive, but if you do-don’t read it, don’t comment and don’t share but know that she is putting herself out there, being vulnerable in an effort to help others.
nurix2010
Lady, let me tell you that we are not ‘special needs moms’. We are moms OF kids with special needs! How to properly refer to a mom whose kids are not ‘gifts that God sends, nor healthy, nor neuro-typical’ like your son should be your rule number 1. Wait a minute! Kids with special needs ARE healthy and ARE gifts sent by God too! Rude!
Aprille
First of all, this post has been viewed my almost 200,000 people and the amount of moms like yourself who take offense to the term “special needs mom” or think it rude has been incredibly minimal. None of the moms I know personally find it rude and most of them use the term themselves.
Secondly, I have never said that children with special needs are not gifts from God or unhealthy. I believe that all children are gifts from God.
I think that if you would read the post in it’s entirety, you would see that my heart is to encourage and bless moms of special needs children – not to offend or be rude. I am a stranger looking into this community from the outside. I would think that moms such as yourself would just be thankful that people care at all, instead of accusing them of being rude because they don’t use exactly the right semantical phrases that you might prefer.
Mary Gardner Martin
I don’t think anyone needs to get into mudslinging about rudeness here. As Aprille says, and I said earlier too (and I have an adult son with autism), people who are trying to help don’t need to have their heads torn off and handed to them. Ya know? We can all get overly prickly sometimes, but I think we need to realize that is us, not the people around us. We get to choose how we respond. Hopefully we will treat people of good will with good will from our side, too.
nurix2010
I get your point, you want to help. That is nice. But my point is. There is MORE help when you treat us (moms of kids with special needs) as you would treat any other good friend. We are not from Mars nor a science experiment. And yes, PEOPLE-FIRST LANGUAGE is a nice way to start that (it applies to the ‘special needs children’ label too).
“Do the words used to describe you have an impact on your life? You bet!
For too long, people who happen to have conditions we call “disabilities” have been subjected to devaluation, marginalization, prejudice, and more. And the first way to devalue someone is through language, by using words or labels to identify a person/group as “less-than,” as “the others—not like us,” and so forth. Once a person/group has been identified this way, it makes it easier to justify prejudice and discrimination. Our language shapes our attitudes; our attitudes shape our language; they’re intertwined. And our attitudes and language drive our actions.
Using People First Language—putting the person before the disability—and eliminating old, prejudicial, and hurtful descriptors, can move us in a new direction. People First Language is not political correctness; instead, it demonstrates good manners, respect, the Golden Rule, and more—it can change the way we see a person, and IT CAN CHANGE THE WAY A PERSON SEES HERSELF!”
This last part being one of the most important things. One that a mom of a typical kid may not understand. Kids are kids first. Moms are moms first, too.
From: https://disabilityisnatural.com/explore/people-first-language
Mary Gardner Martin
My friend, you need to start your own blog for your very passionate viewpoint. I have learned over time to use “person first” language and I am a parent of a special needs child! There are two ways change takes place: evolution (slowly) or revolution (suddenly). I gather that you pretty much don’t want anything to do with those of us who believe that language can evolve slowly among people of good will, as it did with me.
If you are all about telling people “my way or the highway” and “stay away from me if you can’t use people first language” that is your very valid choice. But this is really not the place to express it. You said it once. I get it. Now you seem to be trying to take over someone else’s website for your crusade and I am going to call a foul on you for that.
Anonymous
My special needs kids are not healthy so you cannot generalize.
nurix2010
‘Crusade’? Just trying to show a new way of thinking and better terminology without the need of labeling people. But I guess some older parents do not care about our changing times, ‘my friend’.
Mary Gardner Martin
Interesting how you chose to pick out and focus on the fact that I am an older mother. 55, in fact. Is it possible that, in choosing inclusivity for our children who have disabilities that you have chosen an attitude of exclusivity toward the older citizens in our country? Is that necessarily an improvement, to work toward including some people while you work toward excluding others?
Aprille
I think that this discussion is one that is proving to be futile, for everyone involved.
It was never my intent to slap a “label” on any mother or any child. I see the term “special needs” within the phrase “special needs mom” simply as a succinct, descriptive adjective. Not a label. Not a stereo-type. Not a definition.
I think it sad that some people missed the entire rest of the post and instead have chosen to get hung up on one phrase, ignoring my heart and intentions and all of the other suggestions I have made to help bridge the gap between all moms.
This has done nothing but do the exact opposite of what I am promoting here on my blog – tearing down walls and building bridges.
I will not be approving any more comments about this matter in this part of the discussion.
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Patty@homemakersdaily.com
I’m not a special needs mom but I’m a special needs grandma. My 3-year-old grandson is currently meeting twice a week with an occupational therapist to learn to talk, cooperate and communicate. He hasn’t officially been diagnosed yet with anything but we’re thinking he’s autistic.
Your post was great. I hadn’t thought about the point about #7 “oh, my child does that, too”. Of course, I don’t say that to my daughter-in-law, but I could see myself saying to someone else, “oh, that’s normal.” But you’re right – when Calvin does “normal” stuff, it’s different than “normal”. So thanks for that!
Visiting from SITS.
Aprille
Thanks so much for stopping by, and for all you do for your grandson.
Becky
I’m not a “special needs mom” in the sense that you’re using it, though I am a mom and I’m autistic, so I guess I’m a “special needs mom” in a different way. (To be fair, my son is 11 months old, so I don’t know yet if he’s autistic. He’s related to me, so I wouldn’t be surprised if he was at least an Aspie!) I’m also a special ed teacher of autistic kids, and one thing that we as special ed teachers, autistic people, and parents of autistic people often forget is that sometimes the problems we’re going through *are* the same as the problems that parents and teachers of typical children experience. I’ll see a regular ed 4th grade walk out of a bathroom and THEN put their pants on, or a typically developing kid acting ridiculous and I’ll remember that sometimes the weird and frustrating things our autistic kids do are because they’re kids, not because they’re autistic.
I totally agree with your post, though. 90% of the time, we’re experiencing things in a different way. Sometimes, though, typical kids and autistic kids (and their parents and teachers) are going through the same things.
Aprille
Thank you so much for sharing your experiences!
Carter
This article was brilliant. I can identify very much as a mother of an autistic child myself. I applaud you and appreciate you for speaking out on your perspective as a friend and for giving great pointers for others!!!it is very comforting to have friends like you when our future and the future of our sweet kiddos are full of unknowns. God bless you!!xx
Tara Paisley
I have two children that are considered special needs technically, although I no longer see my daughter that way. My oldest child was born with a birth defect and needed surgery to repair it. She has ongoing mild stomach issues – she’s lactose sensitive for example and probably complains about stomach pain more than your “average” kid. She is finally gaining a bit of weight and at 11 years old is about 65 lbs. That is amazing for us! Anyway, her beginning was pretty rough, but I don’t see her as special needs anymore.
My son is autistic. It is fairly mild in the sense that he can attend a regular class in school without too much help. He does lack organizational skills to a degree and writing is a huge problem for us. Reading is a problem too, but only in the fact that I struggle with finding good things for him to read that are age appropriate but not too easy…. He’s a 3rd grader reading at a high school level. He does have social issues of course, and can “get stuck” sometimes.
I do sometimes use the term, my autistic son vs my son with autism. He is my brown-eyed, autistic child who loves to read and hates to write. For me, autistic and special needs are just adjectives that describe a person just like blue-eyed, brown eyed, short, tall, youngest, oldest, etc. I am a mother to an autistic child, just like I am a mother to two girls and a boy. Just like I am a mother to a blue eyed child. As an autistic child, my son has limitations or struggles that we are working through that other typical children may or may not face. For example, at 9 years old, he still wears a pull up to bed. His handwriting is still terrible, even WITH years of OT. He needs accommodations that other children do not need (like he has a classmate take him to where he needs to be to catch the bus after school because he cannot get there by himself.)
Yvette
Thank you for your post! I am a mother of a special needs child. Severe sensory processing disorder for my oldest and less severe for my youngest. They are both amazing and smart and fun and kind and I could go on forever. That said they have needs that other kids may not and I am happy to help them and help others to understand. However, being a special needs mom can be very isolating. When people don’t understand they tend to avoid, As hard as that can be even for me as an adult, it is heartbreaking for a child. And these kids get their hearts broken enough. Like when they want to simply just go to church but even going to church is difficult at times because the church echoes, or the music is too loud or the material on the chairs is itchy or the microphone “pops”, I have had “a friend” tell me that she would be happy to have my younger less severe daughter over for a play date with her daughter of same age but that I will have to find someplace for my older daughter to go (even though I too am invited) because my older daughter makes her uncomfortable because she doesn’t know what to expect from her. We don’;t know what to expect from any child, do we really? If you don’t understand something….just ask. Don’t make hurtful statements. Rant over….I did want to add one thing to your list that I think is helpful. “If you have questions ask and talk to both parent and child,” Do not talk about the child as if they are not there (this often happens to us and is very disheartening for my children), If you ask my daughter (who is now 9) who has been able to speak and has had a great grasp of the English language since she was 2, she will happily answer your questions with a direct, simple answer and she will be delighted that you cared enough to speak to her/take interest in her. And when you ask…you may just learn more than you bargained for and find that you share things in common with the child you are so curious about! Thanks again for your wonderfully, supportive post to parents and kids with special needs. I am blessed!
Aprille
Great advice and input. Thanks for commenting!
CorasMama
I loved this, as a parent of an autistic teen. The one thing I’d point out, though, is perhaps don’t tell me you’ll pray for healing for my kid’s autism. I like him how he is, and he’s not damaged or diseased, just different. And diversity is good. How he views the world has value for all of us.
But again, I loved this, and thank you for writing it!
patricia Gray
I am a special needs mom of a 3 year old little girl …her name is Danielle and she was diagnosed with a birth defect that affects the eyes which is named ” Coloboma ” she is visually impaired but she is such a trooper . She is also developmentally delayed also has low muscle tone .
We were told by her developmental specialist that she wouldnt be able to kick a ball and as of today she does just that . Her eye specialist is very pleased with her vision and has told us numerous times that his vision is blurry when it comes to her future as he is amazed at her sight.
As her parent I have learned that never to take life for granted and never wish your child to be normal because all special needs children are normal in their own unique way they just show it in different ways and more ways than one. The sky is the limit and always give praise to the Lord above for what he has blessed you with because he knew you as a Mother could take on all that responsibility and roll with it . We are the lucky ones because our Special Needs teaches us a whole new perspective in life. So please keep fighting that fight with your child and always pray that special prayer and always hold your chin up high and never let that devil get you down always ask God for guidance and never be ashamed .. God bless and love and prayers to each of you.
fiveof9
Your post is a great reminder that we all treat each other with respect. Just like we embrace unfamiliar cultures, we embrace each other. Just like if you have a boy and your friend has a girl. We notice differences and engage in conversation about it. With intrigue, sincere inquiry and out of love. How can you go wrong with that? What happens is if a mom feels inferior to one or the other then a defense stance is worn, or if jealousy or anything that is not of love because you worry or simply don’t understand yourself becomes your stance then how can you embrace others from either direction with a sincere approach of, “how are you?” In any situation we are unfamiliar with, we simply come from a place of love. If a mom reacts to you (remember this applies to both sides) when you simply inquired the “wrong” way, then all you can do is give grace. Try and reiterate your intent of knowing. Isn’t that why we ask questions in the first place or spend time with each other? To know, to be, to enjoy being in relationship. When all of us put our insecurities aside then we are able to embrace either party on each side. So if your child has a disability and you think someone is looking at your weird or you feel odd, maybe they do too or they just want to embrace you normally. That is how I operate anyway. And again, a woman with a child with disabilities or a woman with a child that may not have disabilities simply need to approach each other “normally.”
My friend has had a child with “abnormal” behavior and has been diagnosed with a few disabilities and we simply go about our visit with whatever needs attention at the time. There is no certain way we go around treating each other differently. We just exist together with whatever we are doing. Take away the “classification” and just be. No reason to treat anyone differently. Just be.
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D Carr
I am a mother of a 32 yr.old daughter who was diagnosed with mental retardation and autism. back then not much was mentioned about it and she wasn’t diagnosed til she was 10 as autistic. Offer to sit with the child so the mom and dad can have an evening together. It does put a strain on the marriage. Or so they can do things with other children if they have them. Offer to take over a meal. How hard is it to double a recipe if you are cooking for your family.Things can really get hectic and you can only do fast food so long. A girls night would be wonderful. Grabbing a burger or seeing a movie will give her a break. And remember the child will get older and may be more difficult for them to participate or go along. Parents may feel torn when siblings are involved in school activities. One parent may have to stay home with the child. REALLY get to know the child so they feel comfortable leaving the child with you and you will be comfortable with the child. So if you ask her out and she says she doesn’t have anyone to sit with her child say that’s ok. we’ll bring them along. That way you will see how she handles situations and be more comfortable. Having a friend to help is a blessing that they won’t take for granted!
Anna
Hi, found your post via Pinterest and wanted to tell you what a beautiful thing it was to read. I was so touched by your desire to be an empathetic and understanding friend; you come across as the kind of friend any SN mom would love to have. I am relatively new to this journey(my daughter with downs is 20 mos old) but already have known the pain of losing friendships because of discomfort, the difficulties of talking about her with friends trying hard to be sympathetic, and the healing of open conversations about misunderstandings. Have shared this post with good friends who truly love our family just to encourage them in how they are already loving us well. Thank you for your compassionate heart that can truly only come from God, and for writing such wonderful advice!
Aprille
Anna, thank you so much for reading and sharing. My three best friends all have children with autism so it becomes more of a passion of mine with each passing day!
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Maureen Rodgers
The advice comment is the best suggestion. As an RN treating my son for cancer was a challenge and so many people tried to give me advice on new treatments. They were not medical people just friends so it hurt to think I wasn!t doing enough to find treatment.
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Aprille
Thanks so much for sharing!!!!!!
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Leah Miller
I am in tears reading this. What a wonderful friend you are to take the time to be such a voice for your friends of special needs kiddos. I could relate to everything you wrote as a mom of a special needs boy, and feel so energized by your words and how you are engaged in your friends lives – understanding, compassionate, eager to learn. God bless you!
Aprille
Thank you so much. A year after I wrote this post, my son was diagnosed with special needs myself. My friends pour back into my life DAILY and we have such a sweet friendship. I am glad you were encouraged.
Susannah
I am crying as I read this because I am a special needs mom that is so tired and so lonely. It’s so hard walking this road sometimes and I feel like most of my family and friends just don’t really get it. I know what my kid does seems cute to them, but they don’t live with us and see the daily meltdowns, struggles and hurts that happen. I’ve been praying for a friend.
Aprille
This is a very lonely road we walk. I have found my best friends online. Perhaps you can look for some Facebook groups with your child’s diagnosis. http://www.singingthroughtherain.net/2015/10/groups-for-special-needs-families.html
Frances Cheda
Great post!! I’m a special needs mom to an 8 year old girl with Autism. xo.
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Lissa Gardner
Thank you! I always feel I am the only one. Some things that destroy me are, “I’m so sorry ( when they find out about his diagnosis), but he seems so smart.” I never said he wasn’t smart! Or the one that sends me off a crazy turn is, “I work in the school in special Ed, was a teacher for X number of years and I know these things, Etc…….he doesn’t seem autistic to me. He is NORMAL.” FIRST I don’t recall asking for your diagnosis and what type of medical professional are you doctor? What exactly is normal? My son is normal. Grrrrrree. Lastly, my in-laws. WHISPER the word autism. The last time I spoke to them I flipped about this. I had to remind them it’s not syphilis! why should Autism be a dirty word. Omg.
Aprille
All of those comments are incredibly difficult to navigate. Just remember that you are only responsible for your kids – and no one else’s opinion matters.