Adventures Beyond Our Comfort Zone

Growing Up With Special Needs Siblings

Growing Up With Special Needs Siblings

A Sibling’s Perspective

There are dozens of articles about what it’s like raising a child with special needs from the Parent’s viewpoint, but not too many about what it’s like growing up with a sibling with Special Needs.

 

My husband and I have the unique privilege of both growing up with siblings with two very different challenges.   I thought it might be interesting to share both of our stories.

 

I’ll start.

 

Michelle has Down Syndrome

 

My sister was born with Down Syndrome.  For those of you who don’t know what Down Syndrome is, I’ll briefly explain.  When a baby is developing, he or she has a very specific set of chromosomes from mom and dad for normal development.  A baby with Down Syndrome has an extra chromosome, which throws normal development off a little. Each child is unique, with his/her unique struggles (But that’s like any kid, right?!).  A few common physical traits of a child with Down syndrome are: low muscle tone, smaller stature, an upward slant to the eyes, and a larger tongue (so speech is a bit challenging), and slower comprehension.

 

I was 13 when Michelle was born

 

  

When my Dad called to tell us that that Mom had the baby, but the baby had to be rushed to NICU because she wasn’t breathing well, we (my 6 other siblings and myself) stormed heaven with prayers.  Why was the baby not breathing? How’s Mom? Why wasn’t Dad telling us much?

 

Dad came home after several hours and I bombed him with questions.  He was quiet, but calm. I remember him being a pillar of strength during all of this initial confusion.  He said that Michelle was doing better and that she just needed a little extra help. Then he told me that they thought she might have “Down Syndrome”….

 

“That’s alright…. Um, Dad, what’s Down Syndrome?”

 

 

  I had no clue. He seemed a little unsure himself. When he went back to stay with Mom at the Hospital, my older brother and I did some research.   

 

“Okay, so, people with Downs are a little slower, big deal.   We’re a big family, we’ll all be there when she needs a boost! …..  Let’s just get her well and home” And really, that was all we thought.  We needed to get her home and well. We didn’t care that she was ‘disabled’.  

 

Michelle spent 11 days in NICU.  

 

 She needed extra oxygen and a feeding tube.   When she could properly breath, we tackled the eating issue.   She couldn’t nurse, so we tried the bottle route…. That was a struggle too, since she had poor muscle tone in her mouth.   There’s always a Plan B! An amazing nurse from NICU told us about a special ‘pigeon nipple’‘ for bottles, that were made for babies with cleft palates.  Problem solved! We were able to take her home!

 

My Mom was such an example for me during this time

 

 I knew she had to be scared and worried….but I never remember her faltering.  I mean, she’d tear up every once in awhile, but what mom doesn’t after just giving birth?!  She was all strength. She and Dad didn’t care in the least how many chromosomes their baby had, they just wanted to get her home, healthy.  

 

Michelle finally came home

 

We were all so excited to have Mom and baby back!   The general atmosphere was the same as it was every-time Mom brought a baby home… excitement!  Since Michelle needed extra help, each of us had different responsibilities.

 

For several weeks after she was born, Michelle didn’t know how to breath while drinking her bottle.  Mom taught me how to give her a bottle, count every 7 seconds or so, then turn her head so she could catch a breath between sips.  I loved the responsibility. I felt like I was really growing up, because Mom trusted me with feeding her.

 

Every milestone was slow and steady

 

  Eating, walking, talking, even picking things up.  One therapist told us to imagine picking things up with mittens on and that’s similar to the fine motor skills of a child with Down Syndrome.  It was a good visual for us. It helped us to become more patient with her. Every time Michelle hit a new goal, the whole family was thrilled!   

 

Physical therapy, speech therapy,  and a daily dose of patience was just the norm in our lives. Sign language and signing was an everyday routine.  My brothers and sister didn’t feel like our parents were depriving us of attention because Michelle needed more help.  They taught us how to help Michelle, so that they could spend time with all of us. Besides, the beauty of having lots of siblings is that we kept each other entertained.  

 

Many people will say “Oh, Down Syndrome, they’re always so happy!”

 

….  I’m going to have to slightly disagree with that statement… People with Down Syndrome are not always happy.   They have emotional roller coaster just the same as everyone else.

A quality that does surpass ours is their sincerity.   Michelle is the most sincere and genuine person that I have ever known.  She feels very deeply. When you are sad, she is concerned and sad also; when you are angry, she is frustrated and upset with you; And when you are happy, she is truly happy with you, usually expressed with smiles and a long and loving hug.   And that’s what most people see….that sincerity. Many people who take the time to say hello, will greet you happily. And that is exactly how a child or adult with Down Syndrome will respond, with a sincere and joyful greeting in return.

 

Our family has really grown since Michelle was born

We learned that happiness is found outside of ourselves and that life isn’t a race.   It’s slowly and steadily trying everyday to reach those milestones of becoming a better version of ourselves and learning what it means to be genuine sincere towards others and God.  

 

Growing up with Michelle helped me realize that she’s not the one that has Special Needs….we are. 😉  

 

James has Autism

 

I was twelve when James was born.  He was boy number ‘six’ and we were all excited, after all, we were filling our roster.  As a baby, there was nothing apparently “wrong” with him.  James was a bouncy boy, very lively and verbal, but something changed when he was about three years old and everything stopped.   We did not notice it at first, but then we realized he was not speaking anymore. Sentences stopped and he began displaying the typical stimming behaviors.

 

 

We had him evaluated

… and he was eventually diagnosed on the “autism” spectrum. When he was first diagnosed we had no real idea what this meant.   Most people knew the word from “Rain Man”, but what was this disorder? I was now about 15 years old and all I knew was that my god-son was not learning like the others.  He was affectionate, he liked spending time with everyone in the family. Early on, James always made good eye-contact and in some ways was very normal. However, he was not learning some basic things like…  potty training.  

 

Autism is not all “Rain Man”

 

The character portrayed in the film is on the spectrum and has Aspergers, socially challenged, but a savant, capable of very high functioning behaviors.  James does not have Aspergers. Despite therapy, he has not been able to develop speech. While we know he understands quite a bit of what we tell him he cannot communicate well.

 

 

One of the things we learned pretty quickly was patience and the second lesson we learned was detachment

 

Nothing was safe from his curious hands; I spent a minor fortune on contact solution and soap. One of his favorite activities was to dump out any open container, or worse still, many of the contact solutions are saline based and he would attempt to drink them.   We were a large family and usually bought in bulk (makes sense, right?).  Well, we had to stop, because James would dump it out and it was cheaper to lose one small bottle then a large one.

 

We had to lock out and tag out anything we wanted to stay in-tact

 We also became master plumbers. Although he was not quick to pick up on the whole potty training thing, he did  learn that toilets are very amusing in their own way. 😉

 

We have replaced many a commode that no longer worked and would split them open and found things like, stuffed animals, credit cards, bottles, washcloths… you name it, we found it.  We had faster response time changing out a toilet than a NASCAR pit crew. I think we are the only family on the block that has a commercial sewage snake!

 

 

We always had to be very clear with directions and also basic instructions had to be repeated often

 

I will never forget the time I saw my baby brother, stark naked and dripping wet, jumping on the trampoline. We had told him to get out of his wet clothes… but, I guess failed to follow up with what he was supposed to do next.

 

One the questions I get a lot is, “what it was like growing up with a sibling with Autism”?  

 

Despite all the little challenges, my eight other siblings and I love James to death.  He has helped us grow in so many ways. 

I would say, growing up with a sibling with Autism has made me more patient… not just with my brother, but with others. Also, I have become much more detached from things.   It also has made me more aware of the people around me, and has helped me not to jump to conclusions. We never know what someone might be going through and you can’t always tell by superficial external behaviors.

 

 

 

Please comment below and tell us if you have a sibling with Special Needs!

 

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2 thoughts on “Growing Up With Special Needs Siblings”

  • Wonderful article! It’s hard to put into words just how loving Michelle is. I love your whole family but my heart aches to be with Michelle. You are so right when you said that it is the rest of us who are special needs. Michelle is perfect just the way she is.

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