Special needs and community: how walls are built

This is day 21 of 31 Days of Supporting the Special Needs Family. To view the story behind this series and the series contents, please visit the landing page.

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When Jeff Emanuel, father of a son with autism, first heard of our idea to expand the How to encourage a special needs mom post into a book, he told his wife, Katie, “It sounds like you are building bridges instead of walls.” And that’s exactly my intention with writing this series.

We’ve spent the last three weeks hearing the amazing stories of these amazing families. We have heard their hurts, their frustrations, and their intense desire for community and understanding. They want to see bridges built between their families and the general population.

Before bridges can be built, walls must be torn down. And before walls can be torn down, walls must be understood.

Special Needs and Community: How Walls Are Built Continue reading

Shea’s Story {on being a single special needs mom}

This is day 20 of 31 Days of Supporting the Special Needs Family. To view the story behind this series and the series contents, please visit the landing page. Today, one of my local friends, Shea, is talking about her unique situation as a single special needs mom.

Shea's Story {on being a single special needs mom}

I am blessed to be a single mom to a three year old son and a two year old daughter. My son was diagnosed with autism when he was 2 years, 2 months old and my daughter was 7 months old. Their father and I separated less than two weeks later and are now divorced. Many people ask if the diagnosis was the catalyst for our split, but it wasn’t. I knew Holden had autism many months before he was diagnosed; obtaining the formal diagnosis was simply the next step to help him get the Early Intervention therapies that he needed. I share this background to explain that being a single mom to two young children, one of whom has special needs, doesn’t make me a super mom. It’s simply all I’ve ever known, and I’m just a mom doing what it takes to be the best mom I can be to both of my children. Continue reading

The Challenges and Blessings of Parenting Special Needs Children with a Chronic Condition

This is day 19 of 31 Days of Supporting the Special Needs Family. To view the story behind this series and the series contents, please visit the landing page. Today, Emilee Roberts is guest-posting about what her family’s life is like, dealing both with special needs children and chronic conditions of their own.

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We’re a special needs family. Our oldest son is on the Autism Spectrum, our daughter has Sensory Processing Disorder (SPD) and a pending diagnosis of ADHD, and our youngest son has SPD. I have SPD as well, so although it helps me better empathize when they are under- or over-stimulated, it can also result in my feeling overwhelmed. My husband and I also have physical disabilities. I have Fibromyalgia and Chronic Fatigue Syndrome as well as a possible auto-immune disorder. My husband has Chemotherapy Induced Peripheral Neuropathy among a slew of other issues caused by the chemotherapy from his cancer treatment a few years ago. Because he’s a Disabled Veteran, he even gets a number on his disability – he’s considered 90% disabled.

Phew! Did you catch all that? It’s the long way of saying our family has a lot of challenges, but we have a lot of blessings as well!

Challenges and Blessings Continue reading

In His Hands {4 lessons learned from adopting older special needs children}

This is day 18 of 31 Days of Supporting the Special Needs Family. To view the story behind this series and the series contents, please visit the landing page. Today, Sheila Temple is sharing some of the things she has learned through her family’s international adoption of older special needs children.

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When Joshua was brought to the forefront to lead the Israelites, after the death of Moses, I am sure he had a lot of questions but also, a lot of faith.  When Joshua sent spies out into the new land to scope it out, I can see from his human perspective that the action seemed important.  I also know that God had already promised him victory and the land, no matter what they found in their investigation.

Much like Joshua, we are aware that God will be with us.  We also have the knowledge that He will help us do what men think is impossible. Many special needs adoptions are based on blind faith.  There is never a guarantee, much like children we bear, that things will go as planned.  Having two older children before we adopted was enough evidence for me that what you think is going to happen can be disappointing and has problems of it’s own, not to be overshadowed by the joys that abound.

These are 4 things that I did not know before adopting Zhang Zhou, Wang Xue, Ji Rong or Zeng Shu.   Our children were adopted at 3, 12, 6 and 12 respectively, from 2001 to 2006.   If I had known, it would not have changed the adoption process; I may have been better prepared for the new normal that was coming our way.

In His Hands {4 lessons learned from adopting older special needs children} Continue reading

Ezra’s Story: Not quite “typical”…not quite “special” {for the mom of the undiagnosed child}

This is day 17 of 31 Days of Supporting the Special Needs Family. To view the story behind this series and the series contents, please visit the landing page. Today, I’m sharing my son’s story.

ezras story

When I wrote my first post about special needs two years ago, How to encourage a special needs mom {when you aren’t one}, I was writing as the mom who “wasn’t one.” I was the bystander. I had the child who was soaring, soaking up information like a sponge – so far ahead of my friends’ boys who couldn’t eat or talk. The gap was obvious: my son was typical – their sons had “special needs.”

Now, our boys are four, and that gap is still there. Stephen is still on a feeding tube. Adam still only eats a handful of foods. There are still therapies, special education, IEP meetings, and so many other things that these boys go through on a weekly basis that I will probably never comprehend.

But as age two turned into three and three neared four, I started noticing more and more about my own son that was different. There were no developmental or cognitive delays, but his behavior was taxing. At first, I chalked it up to those terrible twos - hoping that the threes would offer some relief and maturity.

After he turned three, everything seemed even harder for him. He was always the one making a scene or getting in trouble. We started getting reports after Bible study or MOMs group of aggressive behavior – hitting, spitting, kicking, tantrums.

He’ll get over it. He’ll outgrow this.

But it just got worse. The days got longer and harder. The arguing more incessant. The screaming louder and more frequent. Night-times continued to be a fight. And as he got bigger and stronger, his behavior wore on me more and more. And nothing…I mean, NOTHING…we did as parents seemed to work consistently.

My thoughts started to change from What am I doing wrong? to Have I missed something?  Continue reading

We Called Him Superman: A Decision for Special Needs Adoption

This is day 16 of 31 Days of Supporting the Special Needs Family. To view the story behind this series and the series contents, please visit the landing page. Today we have military wife, published author, and mom of three Michelle Cuthrell sharing her story of special needs adoption. 

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Before we ever brought our son home from China, we called him “Superman.”

Maybe it was because we come from a house full of boys, or maybe it was because capes and superheroes are just part of our Cuthrell culture. Or maybe it was because big brothers 1 and 2 had already reserved Batman and Spiderman as their preferred superheroes of choice, and we were running out of options for superheroes popular enough to feature their own line of bedding that didn’t clash with Batman and Spiderman in the room where all three boys would soon sleep.

One of three.

But the first time we viewed the medical file of the 2-year-old little boy with the white arm sling living half a world away in China, God made it clear – this was our son. This was our Superman. And Superman, like Clark Kent himself, was “special.”

Clark Kent was an alien child retrieved from a foreign space ship. A child who wouldn’t have spoken his adoptive parents’ language, understood yet their culture or possessed the same social abilities as those who had been born in Kansas. A child “abandoned” by his parents, discovered without a birth certificate, adopted without any knowledge of family genetics or medical family history, and made to be a “Kent.” A child with urgent medical needs – with an allergy so severe it could literally kill him.

If Clark Kent had landed on the front door of one of the world’s orphanages, the photo listing professionals would have marked him with an asterisk for “special needs.” And immediately, hundreds of families would have scrolled right past his name. And they would have missed out on beholding firsthand the wonder and the metamorphosis of the man the comic world would soon know as “Superman.”

It took just one family to help Clark Kent turn his “special” into his “super.”

It takes just ONE AWESOME GOD working through ONE IMPERFECT FAMILY to turn EVERY CHILD’S “special” into his “super.” Continue reading

Encouragement for the Pregnant Special Needs Mom

This is day 15 of 31 Days of Supporting the Special Needs Family. To view the story behind this series and the series contents, please visit the landing page. I’m excited today to have Katie from Wonderfully Made guest posting today with some love for special needs moms who are expecting another baby! 

Encouragement for the Pregnant Special Needs Mom

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A Special Needs Mom With Special Needs

This is day 14 of 31 Days of Supporting the Special Needs Family. To view the story behind this series and the series contents, please visit the landing page. Today, we are moving onto the next section of the series, focusing on special families in special circumstances, and hearing from my brother’s girlfriend, Melissa, as she shares what being a special needs mom means to her.

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When Aprille asked me to write this entry for her blog, I immediately thought to myself, “I have zero idea what to say.” I go through every single day moment to moment: making the best of every moment I have and surviving most of the moments in between. I don’t sit and think about it. Well that’s not entirely true. I obsess over how to fix it, deal with it, prevent it, etc. But I don’t really sit down and analyze what it all means to be me and to do that. I have decent writing skills, but I tend to write poetry, or short stories – things that I can write from an outsiders perspective. I have a hard time collecting my thoughts in any order to actually put them into something other than a ramble when I am writing from my own perspective.

I not only am a Special Needs mom, I am a mom with Special Needs.

A Special Needs Mom With Special Needs ^Pin It!^ Continue reading

Yes, jaundice can do that {Diagnosis Spotlight: Kernicterus – KI}

This is day 13 of 31 Days of Supporting the Special Needs Family. To view the story behind this series and the series contents, please visit the landing page. Today, Miriam from A Rearranged Life is sharing her story about her son’s very preventable, yet very permanent, disability. 

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I’m not sure if she could see me shaking, the mom with the new yellow babe. Whether she could see my terror, my inner battle, I had to be brave. I had to put self aside. I HAD to ask.

“Has your baby’s bilirubin level been tested?”

I wish I could tell you it went well. It didn’t. She was nearly shaking herself – sleeplessness and hormones rushing into one defensive mix. It must have seemed that I was visibly discriminating against her child – labeling her baby as having something wrong. I don’t know. Our own stories loomed too large.

The truth is I should have at least told her congratulations, or that her babe was beautiful first.

The truth is that I wasn’t saying anything was wrong, I opened my mouth to try to prevent the thing.

I can’t unhinge my jaw to tell it without my soul and my own tragedy unfurling alongside my words.

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My husband had just arrived home from weeks working abroad. I’d just given birth to my first child. We’d had that week at home reveling in the new life, the sleepless fog, and our own reunion.

It was too good, a bubble that would burst.

A saturday at home turned into a terrifying ER visit. The curtains didn’t contain the whispers. “Brain damage.”

Yes, jaundice can do that {Diagnosis Spotlight: Kernicterus – KI} Continue reading

Etched Upon My Heart Forever {Diagnosis Spotlight: Down Syndrome}

This is day 12 of 31 Days of Supporting the Special Needs Family. To view the story behind this series and the series contents, please visit the landing page. Today, Marie is guest posting for us, sharing her story as the mom of an adult son who has Down Syndrome.

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I never dreamed this short essay would be so difficult to write. With each attempt, the tears flowed more than the words as yet another blank page stared back at me. The completion deadline has come and gone. Sigh. I tell myself to push through and wonder why it’s so hard.

I realize the tears are expressing this momma’s life journey that began 27 years ago. The pain, the joy, the blessings, and the grace are all wrapped tightly in heart-felt ways that words can’t fully express.

How do I explain the gut-wrenching fear of the unknown upon hearing my newborn son, Michael, had Down Syndrome?

Or the sheer exhilaration of him achieving a developmental milestone while not giving a hoot that the time it took far exceeded the pediatric “normal” range on that little bell-curve chart in the office?

Or when I thought I had it “all together” until some kid at the pool asked my oldest son why his brother’s face was so weird looking. Ugh. Back to square one.

Or the pain as Michael landed in a crumpled heap on the couch after school one day groaning, “My brain hurts!” after taking (and failing) another semester exam. The anguish as we both cried as I tried to encourage him that in heaven it won’t hurt his brain to think.

My journey is in shades of dark, cloudy colors for much of the early years. There were lessons that exposed my selfish desires and motives, impatience, and anger with God. Today, I can tell you it’s a journey I wouldn’t trade because there were also amazing lessons of mercy, grace and love although I honestly didn’t always see that or believe it to be true.

Years ago, when Michael was still fairly young, I read Psalm 139 for the first time. This truth hit me right between the eyes: Continue reading

Dark House of Hope {Diagnosis Spotlight: PDD-NOS}

This is day 11 of 31 Days of Supporting the Special Needs Family. To view the story behind this series and the series contents, please visit the landing page. Today, Meg Melnik is guest-posting about what life is like parenting her daughter who has PDD-NOS. 

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Many, many days I’ve spent wondering and hoping if my daughter, Hope would be able to mature physically, emotionally, mentally and spiritually. It’s not so terribly unusual. Most parents wish for their children to grow up happy and strong. The big difference being that my daughter, Hope suffers with autism. All the hope and dreams that came with our newborn child fell quiet as we searched for clues as to why she cried endlessly, why she couldn’t speak and why she couldn’t even look at us.

Family pics up to 2012 031

Answers eventually came when Hope was three years old. We received the diagnosis of Pervasive Developmental Disorder-Not Otherwise Specified. Huh? What does that mean? Psychiatrists, Behavioral Therapists, Speech Pathologists and endless other professionals answered my questions. PDD-NOS was a form of Hi-functioning Autism, which often accompanied sensory-issues.

The good news was that there were finally some answers. The bad news….It was too painful for her to exist in our world, too painful for her interact with us. The world was just too painful—period. So she hid away in her lonely, quiet world, where it didn’t hurt so much. It made sense to me to protect my child. After all, the world was so overwhelming; filled with noises that caused her pain. The only problem with my desire to protect her meant that she would not grow up healthy and strong as other children did. So we did as the Psychiatrists advised. We took her out, small doses, at first and built from there. But, disaster struck. We tried a trip to Wal-Mart, but we didn’t even make it out of the car. (Sigh) I went back home. “Take smaller steps,” the therapist said to me. A picnic in the front yard? But there were dogs barking down the street. (Sigh) We went back inside. “Smaller steps,” the therapist repeated, take her outside on your deck and hold her in your lap until you can sing the entire song, ‘Twinkle, Twinkle Little Star.”

As I opened the sliding glass doors, a breeze blew across Hope’s cheek. Hope let out a whimper of protest, but I ignored her protests and boldly carried her out onto the deck. Screams erupted from Hope, as if I was peeling her skin off. She squirmed, pushed, and kicked—anything to be out of the arms that had betrayed her.

“Hope, listen to the birdies,” I encouraged. “Let’s sing like the birdies—Twinkle…twinkle…”

I was only two words into the song, when she managed to twist herself out of my arms and terrified ran back into the house.

“Good, good!” my therapist encouraged. “Try it again tomorrow.”

I was incredulous, why would I cause her so much anguish again. She knowingly answered my unspoken questions.

“If you don’t push her beyond her boundaries, she’ll always be afraid of what she doesn’t understand.”

The next day, we tried again—still erupting into hysterics. After a week of trying, I was able to finish the line, “Twinkle, twinkle little star how I wonder what you are.” I was so happy, but exhausted.

Were all these tears really worth it? How much effort would be involved in simply getting my child to exist outside of our house?

‘Small steps’ the words of my therapist still echoed in my head.

Exactly how many small steps am I going to have to take?? I wondered.

Eventually after many months and many, many, small steps, Hope did learn to overcome her sensory over-stimulation. But, there were many other large hurdles to overcome. Always, that same refrain would ring in my ears—one small step at a time, and then reward her (and myself) for that small step that she was able to take. Instead of seeing the world for what she has not accomplished, see the world for what she has done.

Family pics 2012-2014 098

It was years later, when we were stumbling through other issues with my beautiful Hope, when I would receive an image which would help me continue on. It was late one night and I had rented a movie. It was the sort of chick-flick, romantic film that my husband hated, but I tended to get lost in. My children were in bed and it had been a long week, so I was looking forward to some escapism. My husband asked if he could pass this one up. “Okay fine,” I said. “Go on to bed.”

While the film started out fine, it had a dark and despairing theme, which left me on edge. I finished watching it, but as I turned off the family room lights, I realized that my husband had turned off all the other lights in the house. I was left to feel my way up the stairs in my dark house. To say that my house was dark was a bit of an understatement. A more accurate assessment would be to say I had no vision in front of my eyes, even as I waited for my eyes to adjust to the dim lighting. There was simply no light to break through the blackness. Carefully, I felt my way along the wall as my feet sought the top of each step. I realized that I had reached the top of the stairs, when there were no more steps for my feet to climb. I knew I was in my kitchen, when I felt the tile floor with my bare toes. But, still…the world around me was black. Should I move forward or would I bump into the wall?? I sought out any source of light, which would tell me how to move. Finally, there was some pale moonlight glowing from the window in the back bedroom. Thank you God—there was a sense of direction. I managed to find my way to my bed, climbed in and felt safe; quite thankful for the pale moonlight which guided my steps.

In my final sleepy thoughts, I realized there was something familiar about that journey up the stairs. My journey with my daughter carried the same blindness, the same groping for answers, the same stumbles and getting up. This single thought gave me great hope:

At the bottom of the stairs, I had to trust that the light would come – only if I moved forward.

Family pics up to 2012 096

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Meg

Meg and her husband currently live in Frederick, MD . They have been blessed with two beautiful daughters, Hope is 15 years old and Jillian is 13 years old. Twelve years ago, when Hope was three years old, she was diagnosed with PDD-NOS or Hi-Functioning Autism. Since then, they’ve been on a journey of discovery and growth. Meg loves to spend time with her family. She also volunteers helping special needs children at her church, reading and cooking. Meg is passionate about offering hope and support to families with a special needs loved one. To all of these families that read and are touched by our messages, please know that you are not alone.

Parenting a Child with PIDD

This is day 10 of 31 Days of Supporting the Special Needs Family. To view the story behind this series and the series contents, please visit the landing page. Today, Jennifer Janes is guest posting, highlighting her daughter’s diagnosis.  

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I was going to be the cool, relaxed mom the second time around. I didn’t freak out every time a pacifier fell on the ground or my daughter picked up food off the floor at home and ate it (five-second rule, right?). I wasn’t as paranoid about dirt or germs in general, runny noses, random coughs and sneezes, and accidental sharing of sippy cups.

Then my younger daughter was diagnosed with a Primary Immune Deficiency Disease (PIDD). It took several years, but I knew something was wrong after she required sinus surgery for an antibiotic-resistant strep before she turned two years old. Some of the strange health problems were finally attributed to a PIDD shortly after she turned four years old. She does make antibodies, but her body simply can’t make enough to keep up with the demand.

She started immunoglobulin infusions when she was four years old. That was when it really hit me that there was a serious problem. I started reading more about PIDD and realized how dangerous it can be. Everything changed.

Parenting a Child with PIDD {31 Days of Supporting the #SpecialNeeds Family Day 10 @ beautifulinhistime.com}

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

This is day 9 of 31 Days of Supporting the Special Needs Family. To view the story behind this series and the series contents, please visit the landing page. I’m excited today to have Sara from Tlithaqum guest posting today about her son who has autism and is still being fed with a feeding tube.

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

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I’ve been a Mama of a tubie (that’s short for “child with feeding tube”) for almost as long as I have been a Mom. My sweet little boy has been fed through his feeding tube since 5 months old, and we just celebrated his 4th birthday! He has other special needs that go along with the reason for needing a feeding tube. Feeding tubes are not uncommon, but tube-feeding is one of those things that still seems odd, rare, and maybe even scary to the majority of people out there. There are a myriad of reasons for which a child (or even an adult!) might need to have a feeding tube. Continue reading

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

This is day 8 of 31 Days of Supporting the Special Needs Family. To view the story behind this series and the series contents, please visit the landing page. Today, Katie from Wonderfully Made is guest posting about the financial needs of special needs families! 

Understanding the Financial Needs of a Special Needs Family (and how YOU can help!)
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When my son was diagnosed with autism, I was overcome with emotion. For months, we had been confused, exhausted, and despairing of our son’s struggles. Finally, his severe behaviors, perseveration, OCD, sleeplessness, challenges to communicate, and anxiety made sense. Finally, we had an answer. Finally, we could get him the help he needed. And for that, I felt a tremendous sense of relief.

Our son’s diagnosis opened doors that otherwise would have been closed to him and to our family, and we hit the ground sprinting to get him the services he needed, including weekly occupational therapy, speech therapy, social skills groups, floortime sessions, and more. Over the months and years, we saw him improve by leaps and bounds. We would never change his level of care. We would do it all again in a heartbeat.

With that said, the journey has not been easy, and one of the most difficult aspects our family and all families with special needs children must face is the financial impact of the care our children need and deserve. I am often asked why our financial needs are so great and here is my answer: Continue reading

Life as a special needs dad

This is day 7 of 31 Days of Supporting the Special Needs Family. To view the story behind this series and the series contents, please visit the landing page. Today, I’m opening up my blog space for my husband, Russ, who is going to share a little bit of how what’s been going on with Ezra (which I will share about more fully later on in the series) affects him as a disabled combat veteran. 

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I am a special needs dad.

It would be great if my son was just different from other boys and struggled with stuff that should be pretty easy and normal for most kids.

It’s hard because that’s not it.  I am also a disabled veteran who suffers from an anxiety disorder.  So yeah, our house is lots of fun.

Life as a special needs dad #veteran #anxietydisorder {31 Days of Supporting the #SpecialNeeds Family @ beautifulinhistime.com}
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