Monday, July 27, 2009

Watching my brother with Downs Syndrome enter adolesence

Simply stated, I LOVE my brother Matt. He was born right after I turned 12, and I spent my teen years feeling like I was second mother to the little guy. Since we were in the remote city of Sentani, Indonesia, there was no prenatal testing and mom and dad didn't know Matt had Downs Syndrome until after he was born. For them, it was a huge adjustment to release the dreams and expectations they had for what Matt's life (and their life with him) would look like. For us kids, he was our brother, Downs Syndrome was a blurry concept that didn't bother us, and we were overjoyed to welcome him into our family.

Matt's birth

From childhood

Of course, life had to adjust so that Matt could get the special care he needed. Mom learned how to do speech and physical therapy with him, and we all pitched in. The family came back to the US twice, partly so Matt could get the extra schooling and therapy he needed (still, I'm convinced no therapist has come even close to what my mom has taught him!). Yes, Matt grew up more slowly than other kids, but he is still pretty high functioning for a child with Downs Syndrome. He is active, inquisitive, imaginative, he's hilarious and sarcastic, loves to tell stories, and he's usually happy and LOVES to talk to people.

From childhood

Because of all of that, we have hardly ever felt like Matt was mistreated or ignored, even by other kids. He was mainstreamed in the public school for grade school, and even then the kids learned to accept and be friends with him, which was super cool to watch. Adults LOVED him. He was an adorable baby and such a likeable little boy, so everyone wanted to talk to him and get a hug from little Matt.

I loved spending time with Matt when I came home from college. My siblings said I spoiled him and they are probably right. He was so funny - he would disappear and reappear 15 minutes later in an entirely new outfit, sometimes a cowboy outfit, sometimes a tuxedo... so funny. He sings completely off key and is just so funny and endearing, and the stories go on and on, like when he had to get a shot and afterwards lifted his tear-stained eyes to the nurse and mournfully told her, "thank you". How could you not just want to hug that kid?

Basically, I LOVE Matt.

About a year ago Matt hit his growth spurt, and suddenly he's shot up, his voice has deepened, and he's got the body of an awkward teenager while developmentally he is still about five years or so behind his body. It's different for Matt now - adolescents scare people anyways, but an adolescent with Downs Syndrome people are particularly uneasy around. With the family back in the US for six months Matt will be back in public school. IT SCARES THE CRAP OUT OF ME. I can't imagine what 8th graders will be like to a kid with Downs Syndrome, even if he is friendly. In fact, maybe even MORE because he's friendly. For the first time, Matt is different and everyone is awkward about that, and that affects him, and then it affects all of us. It's tough.

He's a teenager. He's beginning to be moody like a teenager, and his growing awareness of how people perceive him combines with adolescent insecurities to make him much more easily frustrated with himself. My parents are confronted with the need to teach a little boy how to deal with an adolescent's changing body. It's... a tough stage. I ache for Matt and for my parents.

My parents are incredible. They have such patience in teaching lessons again and again. They have such vision - mom taught Matt to read this year, and she refuses to ever think that he can't learn something. They treat him with respect but discipline. They invest in him. Best of all, they laugh. That's my favorite thing about my family, our laughter. When I look back I realize that it's never been easy for my family, but because we had so much FUN and were so well loved, you would have thought we grew up the most privileged kids in the world.

So yeah. Matt's gonna be okay. He's a strong little guy (or not so little any more). He has a mind of his own, he is determined and stubborn and loving and he is covered by the love and prayers of all of us. My parents are awesome, and they are working so hard to guide his growth in maturity and integrity as a young man... which is just crazy... how can little Matt be a young man? He is. But he's still my little brother.

Isaac kacie and matt

Below is a video I took of him the day after we arrived overseas to spend Christmas with my family. It will probably take you a minute to understand him past his speech patterns.


In the above photo, the family was on vacation and all of us were spending hours reading. Matt was just starting to read, but he grabbed a Little House book and literally would spend 20 minutes at a time, studiously "reading" page by page.... with the book UPSIDE DOWN.


Annie Peterson said...

Oh, Kacie, he sounds like a great brother! :) The Lord has such exquisite plans for him...your parents sound amazing, and I know Holy Spirit is walking right along with them and him, leading his life.

Jaimie said...

I could understand him from the get-go. Haha. He's adorable, so happy. Happiness is invaluable.

weelass said...

It sounds like your parents are doing such a great job with him. I have found with most of our clients who still have family involvment, their parents can sometimes be their worst enemy developmentally. Even my parents do not believe that my brother is capable of learning some things so they do not even try.
I think we were very fortunate with Stevie's school. He was not mainstreamed for all of his classes, but he was well liked by jocks and geeks alike. There was the occassional jerk who would take advantage of his generosity ('can I have that $5?' 'ok'), but overall I think high school was a decent experience.

Betty Beguiles said...

I wish I had just an ounce of the joy that shines through on his face. So inspiring.

Troy said...

He is covered in love and prayer, that comes across. :)

Troy said...

Oh and he is completely understandable in the YouTube clip. That looked like a very happy occasion indeed. I think hitting him up for questions when he's chowing on naan might be an issue though, but otherwise it's all good. :) LOL

Bethany said...

Aw, he sounds like a sweet brother. :) I nannied for a little boy with Down's and he completely stole my heart. They're so happy!

Anonymous said...

We have a daughter who is almost four and has Down syndrome. She is a central part of the joy and laughter in our home. It's encouraging to read your blog and see the great relationship you have with your brother...our older son could be writing some of the same things in 8-10 years.