31 Days of Supporting the Special Needs Family

The Story Behind the Series

The story of this series begins five years ago. Kathryn, Sara, and I were young military wives who had met online. We were expecting our first babies – all boys. We commented on bumpdates and nursery pictures and even sent baby gifts to each other.

One after another, we gave birth to our precious baby boys. Our sons’ births were hard, each fraught with complications and emotional distress. Nothing went how we planned. Our connection went deeper as we struggled with things like breastfeeding problems and postpartum recovery.

Beyond recovery from birth, my son, while definitely challenging and high-needs, grew typically according to the standard growth and developmental patterns. He met his milestones like the average child.

But their sons didn’t. And over the next few years I started learning a whole new language because of them.

Feeding therapy, NG tube, IEP, ABA, hypotonia, sensory processing disorder, and eventually…autism.

I have not been the best friend. I have made my share of mistakes. I’ve said my share of ignorant – if not downright hurtful – things. Mothering has been a humbling experience. As I have grown into where I am today as a mother, I have also grown in my understanding of friendship, support, and empathy.

While I have never met either of these women in person, I consider them to be my closest and dearest friends. So when they hurt, I hurt. When they share their struggles of wanting their sons to simply eat or talk…I struggle within myself.

I wonder, “Why is this fair? Why was my son the neurotypical one? Why do they have to suffer while we live our average lives?”

I don’t have the answers to these questions. But I believe that God has had a greater purpose in our friendship. I believe that this series is a part of that purpose.

When our sons were getting ready to turn three, I wrote a blog post called How to encourage a special-needs mom (when you aren’t one) in hopes of encouraging them and other moms like them. It was something that they could share with their friends and family about how they could be encouraged and supported. It was full of some things I had learned through the course of our four-year friendship. This post was such a blessing to them and other moms of special-needs children around the world that it ended up going viral earlier this year. This post has now been viewed over 204,000 times.

Through this post, I met Katie – a sweet mom with such a similar story to Kathryn’s and Sara’s. She too has a boy, just a little bit older than my Ezra, who is also on the autism spectrum.

She and I connected through our writing, then Facebook, then Voxer.

My friendship with her deepened quickly. And then, on the evening of January 14, 2014, she suggested that I expand my post into an e-book.

In that moment, I cannot explain the excitement yet peace that I felt. The immediate feeling of, “Yes, a resounding yes! This is a message that needs to be told. A dialogue that needs to be opened.”

Together – Katie, Kathryn, Sara, and I want to see the walls separating the special needs community from the rest of the world fall down. We want to see bridges built and friendships forged. We want to see churches and communities step up their game to rally around the parents of special-needs children.

Unfortunately, my life this year has not afforded me the time or the means to work on this immense undertaking. I’ve written a few pages in a notebook here, notes on a document here, a chapter on Google Drive there.

In July, I started thinking and praying about doing 31 days this October. I couldn’t seem to hone in on a topic until one morning I thought to myself, “Why not turn the book idea into a 31 post series?”

At first it felt like I was giving up on authoring a book, but at the same time, I felt like this content was so important that it couldn’t wait to be shared until my life magically gave me time to write a book.

So it is with much prayer, planning, and discussion with my closest friends that I open this series, 31 Days of Supporting the Special Needs* Family.

31 Days of Supporting the Special Needs Family #write31days

Over the course of the next 31 days, we will be hearing from Kathryn, Sara, and Katie – as well as several other special needs moms and dads. We will be highlighting several different diagnoses (not just autism). We will speak about the intense challenges that these families face (financial considerations, marriage struggles, and more). We will discuss what factors build walls between the special needs community and others. We will talk about how those walls can come down and how these families can get more support from their friends, family, churches, and communities. Join us?

31 Days of Supporting the Special Needs Family #write31days

 

Series Contents

 

Part 1: All About the Special-Needs Family

Day 1: The Story Behind the Series and Series Contents

Day 2: The Profile of the Special Needs Family

Day 3: 5 Ways Our Special Needs Child Strengthened Our Marriage (and How We Stayed Together)

Day 4: Making a Way in the Wilderness: Marriage and Special Needs

Day 5: “I’d Have It No Other Way”

Day 6: TBA

Day 7: TBA

Day 8: TBA

Day 9: Understanding the Financial Needs of a Special Needs Family (and how YOU can help!)

 

Part 2: Spotlighting Special Diagnoses

Day 10: Our Journey with Tube-Feeding: The Good, the Bad, and the Ugly

Day 11: Parenting a Child with PIDD

Day 12: Dark House of Hope {PDD-NOS}

Day 13: TBA

 

Part 3: Special Needs Families in Special Circumstances

Day 14: TBA

Day 15: TBA

Day 16: A Special Needs Mom With Special Needs

Day 17: Encouragement for the Pregnant Special Needs Mom

Day 18: We Called Him Superman: A Decision for Special Needs Adoption

Day 19: Not quite “typical”…not quite “special” {for the mom of the undiagnosed child}

 

Part 4: Opening Dialogue, Building Bridges, Creating Community

Day 20: Special needs and community: how walls are built

Day 21: Bridging the Gap

Day 22: Special Needs Moms: Are You Special or Just Like Other Moms?

Day 23: Community in the Midst of Special Needs

Day 24: TBA

Day 25: Welcoming Families with Special Needs {Practical Advice for Churches}

Day 26: Practical advice about playdates with a special needs child

Day 27: TBA

Day 28: 3 #Ausome Apps for Children with Autism

Day 29: TBA

Day 30: Resources for the Special Needs Family

Day 31: Ultimate list of encouraging blog posts for special needs families {and those who love them}

 

Subscribe to receive all 31 Days posts by email! 

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*A brief disclaimer:

I recognize that there is some controversy regarding the term “special needs family.” Some families prefer the term “disability” and say that the term “special needs” generates “pity and segregation.” Others take offense to the wording of the phrase, saying it is not “people first language.”

I have contemplated these things for a year now and spoken with several families about this issue. I have chosen to go ahead with using the term because I feel it to be the most all-encompassing. I want no family with extenuating needs to feel excluded – whether those needs be a disability, a mental health disorder, a behavioral disorder, a physical deformity, a genetic or birth defect, or an illness such as cancer. All of these needs are valid. 

As far as putting the descriptor in front of the person, it is only for sake of brevity of words that I have done so. I recognize that these amazing children and families have a personhood and identity that reaches far beyond their needs.

My sole purpose is encouragement. It is my hope that all who land here find it.

seven {more} things my #Allume roomies should know about me

I’m headed to Allume again this year – a blogging conference for Christian women, hosted next month in Greenville, South Carolina.

I’m much more relaxed about it this year – not doing any planning or over-thinking. I’m just going to get a break from life, learn more about blogging, and hang out with other bloggers who really understand what it’s like to be a blogger.

Last year, I shared 10 things that would let my roommates get to know me a bit better {and a vlog}. This year, I’m sharing a few more things with my NEW roommates, Katie from Wonderfully Made, Jennifer from Jennifer’s Life Between, and Wynter from the Made To Mother Project.

7 {more} things my #allume roomies should know about me Continue reading

Beauty in the Mess ~ Edition 09.27.14

I really have no words for how difficult the last few weeks have been for our family.

Our son’s behavior has led to both a suspension and expulsion from his private preschool (although those words were never used and the school was ever-so-gracious about both). While we are well on our way to getting some help for him through a behavioral therapeutic day treatment program, he cannot start until the first week in October. This has left me at home with a very difficult child, who also is not sleeping well. It’s him and me against the big bad world – well, in reality more like him against me. 

Several of the professionals and other concerned individuals have asked about my support network. And it’s hard to answer. Because I have a lot of emotional support. But sometimes, what I really need is someone to take him off my hands and give me a break. But most of my friends have kids in school or are homeschooling, my MIL works full time – and then there is the behavioral aspect which makes it difficult (if not even dangerous) for anyone else to keep him. Taking care of him requires a lot of physical strength (of which I feel like I’m lacking, but I do what I can). There’s lots of lifting, picking him up when he’s kicking and screaming, getting hugged and tugged on – and even hit and punched – constantly. It’s not like I can just ask anyone to deal with him.

He literally smashed my head in the fridge yesterday. I poked my head into the fridge to look for my soup and next thing I know, BAM, my head is smashed between the door and the edge of the fridge. It hurt. I screamed. Scared him half to death. I cried off and on for the rest of the afternoon.

So, it’s just been a lot to handle.

But I want to share some blessings – some real God moments – even before I get to all the pictures and beauty in the mess I normally share.  Continue reading

Everyday us {and more little bits of our story}

I’m seventeen and I’m sitting on my bedroom floor, the body resting on the white carpet growing uncomfortable. There’s a notebook in my lap, and I am writing a letter. Guilt and shame is coursing through me, but I think I’m doing the right thing. I’m getting right with my parents.

My hand is sore but the words keep coming as I confess my shortcomings…secrets they didn’t know. I tell them how wrong I have been to give my heart away. I tell them how I have made a decision to give my heart to them and “go to sleep,” like Adam did, until God decides to bring me my mate.

Then I list their names. All of the boys from the first grade on who had caught my eye or who I’d ever entertained a romantic thought about. No secrets left untold.

This list brings me sorrow and makes me blush… I pray that you will forgive me for this. My prayer to God is that He will “create in me a clean heart, and renew a right spirit in me.”

My desire is that both of you will have my whole heart.

I remember writing his name on the list. I remember feeling embarrassed that he was even there.

Ironically, he was probably the only one on the list who even knew I existed. Continue reading

Hold – and how I failed the #ILoveYouChallenge {Five Minute Friday}

I am holding him in my arms. Squeezing so tightly I know my arms will probably be sore tomorrow. He is thrashing and his eyes are shut so very tightly.

I am begging him to look at me so I can try again..

I was frustrated and exhausted because all I wanted him to do was eat his lunch. But I wanted to breathe in and out and take three seconds to tell him I love him. Because I want so desperately to be a good mother.

I took the three second challenge but it came out too tersely and he covered his ears and screamed at me.

Not nearly the “good mom” moment I was going for.

He still refuses to look at me. Eventually I release the hold, walk up the stairs, and lock myself in the bathroom. My heart is racing and my emotions are raging and I need a time out.

He stands outside the door and screams some more.

I try to breathe.

I try to hold it together and fail.

And a few hours later after a short nap, I find it happening all over agin. This time, he is holding my face, spit landing on my cheeks as he meanly demands I turn off Daniel Tiger. My hair gets pulled.

And again, I try to hold it together and fail.

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Linking up today with Kate Motaung for Five Minute Friday. “This is meant to be a free write, which means: no editing, no over-thinking, no worrying about perfect grammar or punctuation.” Today’s prompt is “Hold.”

Tactics of infancy {two steps forward, twenty steps back}

My hand rests on the gingerbread man. This blanket, that I’ve had since I was a child, now rests on the back of my son. My hand rises with his breath…a gentle rise and fall.

four year old sleeping

This blanket was my favorite because of its weight. It went with me to camps and college. When I was a teen, I tucked both arms underneath it, my hands clasping a little New Testament – fearing the demons that I believed were inhabiting my home.

I prayed a lot under that blanket.

Now, here I am. Knees knelt on the hardwood floor. Hands resting on his back. This child who seems to be fighting proverbial demons all the time.

I bow my head on top of the hand upon his back. It’s a prayerful position, but I can’t seem to compose my thoughts into a prayer. That is the story of my life these days. But I know God is here in this moment. My silence an offering, a request to the All Powerful One.

When I was away camping this past weekend, I shared a room with my son. That being the case, our night-time routine of rock-for-ten-minutes-then-leave-the-room-listen-to-him-cry-put-him-back-in-bed-five-million-times-over-the-course-of-an-hour-and-a-half was impossible to carry out. So I resorted back to the tactics of infancy: patting and rubbing the back until the child falls asleep.

Each time his breathing slowed rapidly, and he was asleep within twenty minutes. Continue reading

Camping and Calm Baby {a little update and about my weekend}

The rain patters on the tin roof. I’m wrapped up in a quilt in an Adirondack chair, my second cup of coffee at my feet. The morning air is cool but pleasant.

Camping and Calm Baby {a little update and about my weekend}

camping and calm baby 4

camping and calm baby 5

The child next to me keeps crying about everything. How he doesn’t want to sleep, how he wants to go next door, how he wants my blanket instead of his…and now it’s just an exasperated “HEYYYYY!!!!” every time the app he’s playing doesn’t do what he thinks it should.

He finishes his first puzzle. I take a sip of coffee and choose another for him.

I stood there in the principal’s office on Friday, and she said the words. “I think you know what I’m about to say.” Continue reading

On forgiving my ever-changing body

Have you been following along over at Wonderfully Made for Faithful Fitness Fridays? This series has ended up being so much more than I expected it to be. Katie and I have both poured our frustrated mommy hearts out on more than one occasion, and I think that we have totally succeeded in our goal of encouraging moms to love and care for the bodies God gave us.

This Friday’s post falls to me, and while I don’t normally do this, I thought I would share a teaser over here. No matter where you are as a mom in regard to fitness or healthy eating, I feel that this post will resonate with you.

We moms are constantly bombarded with the images and pressure to get back our pre-baby bodies, are we not?

But in this post, I question that logic. For, if motherhood has changed me (emotionally, spiritually, psychologically), does not my body also have the right to be changed by motherhood?

Head on over to Wonderfully Made today and read my post, Faithful Fitness: A Love Letter To My Body.

Faithful Fitness: A Love Letter To My Body

Hope

Normally, I don’t have trouble finding words.

Tonight, I’m feeling a lot of feelings…but I’ve written and deleted a few times now because the words just don’t seem to fit the feelings.

I want to tell you that I really love my kiddo, in spite of how hard it’s been lately.

I want to tell you that I might have figured out how to get him to sleep later in the mornings and that the earliest he’s woken up in the past week is 6:15. {But I don’t want to tell you how, in case it’s a fluke.}

I want to tell you how he is most-likely getting into a behavioral program that will help him.

I want to tell you how he is advocating for himself by using more descriptive words, telling us what’s upsetting him, and putting himself in a special spot at school to “get a break” or “get in control.”

better 01

I want to tell you how we’ve made it through two whole days with no phonecalls home from school and how that feels like a miracle.

I want to tell you how I got to go to therapy, clean my office, and even watch a little TV for leisure.

I suppose if I could put it all into one word, it would be hope. Continue reading

Tour Around Blogland {Q&A About Blogging}

Elizabeth from All Kinds of Things has invited me to join her in a tour around blog land. She has challenged me to answer a few questions and then nominate three other bloggers to do the same in their space and then continue the challenge!

Let the Q & A Begin…

1) What am I working on?

My blog: Mostly, I’m very focused on preparing posts for my 31 Days series. This means writing ahead, compiling posts by guest posters, creating graphics, updating the schedule, and then sharing via social media and email. There’s a lot involved. I am not normally one to work ahead as a blogger, but for this, I want to make sure that the content I am going to offer my readers is stellar and well thought-out.

Guest posting: I’m working on a guest post for Simple Beautiful Life. I’m going to be “going local” and sharing some specific things I love about the town and region I live in. And then, of course, writing every other week over at Wonderfully Made for Faithful Fitness Fridays. You can view all of the posts so far on the Faithful Fitness landing page – and the post going up this coming Friday is by far my favorite. So make sure to check back!

Admin and VA work: I’m so privileged to help out two friends with their monthly newsletters! It’s a great hobby and it helps them out. I love the partnership that I have with them.

2) How does my work differ from others in its genre?

Continue reading

#stuffEzrasays: the 3-year-old edition

I have not posted a #stuffEzrasays post in ages, but, in honor of his 4th birthday, I thought it apropos to share the highlights from this year. This is long. #sorry #notsorry Enjoy!

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Sept 15
“If I was a ‘lil boy, I would NOT eat toast.”

Sept 15
Tonight, I was rocking Ezra and singing Forever Reign to him, and when I got to the part that goes “You are God, You are God” he says “I’m not God! I’m EZRA!!!!”

Sept 16
Went to the Greensboro Science Center today.
Naming the penguins: “Dat’s Shem and Ham and Shem and Ham and Shem and Ham and Ham and Japheth!”

Sept 17
After the gym, Ezra ran up to my car, gave it a hug and said, “MOMMY CAR! I’ve been looking for you ALL DAY LONG!!!”

Sept 21
Ezra, reading a nativity story book: “MOMMY LOOK! A baby born popped out of the NEST!!!!”

Sept 21
Ezra: I need a band aid for my boo boo
Aprille: No, you only need a band aid when there is blood. You are ok.
Ezra: But…but…you need to put blood on my arm so I can have a band aid.

Sept 26
Ezra: Hi Empty Pitcher! We’re the Super-Ree-ers, and we want to talk to you!
Me: Are you being the Super-Readers?
Ezra: Well, not edsactly. We’re being da BE-TEND Super-Ree-ers!

Sept 27
“Thanks for getting my butt cleaned, Mommy.” Continue reading

Ezra’s 3rd Year: The Highlights (and a few bloopers)

Crunching down a year’s worth of video footage into 17 minutes has to pretty much be a world record.

Here’s a few things I learned about my son (and his parents) in the process:

1) All. The. Dancing. I knew we liked dancing, but I didn’t realize quite the extent of the dancing love.

2) Singing is a talent. It needs developed, but so precious all the same.

3) Mommy is probably a little too obsessed with “Lion Song” (aka Forever Reign) – but for good reason. (and isn’t it the cutest?)

4) Little boys and poop. Nuff said.

5) We really are doing a great job of making sure God is involved in his life, getting him playtime, and spending time with him as parents – even when it doesn’t seem like it.

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Related posts:

Ezra’s First Birthday Party

Ezra’s Second Birthday Party

I had a birthday

Mine: because sometimes you need to fall in love with your baby all over again

Ezra turns three!

Ezra’s Little Blue Truck 3rd Birthday Party