Wednesday, April 4, 2012

Teens and Autism: What does it mean to be "typical"

Today is a guest blog post from the TLT Teen Reviewer Cuyler Creech in honor of Autism Awareness Month.  Cuyler is the "typical" older brother to Skeet.  Skeet is autistic.  He also has Down's Syndrome.  The two brothers are very close and today Cuyler shares their story.

Think back to when you were in school. Like elementary school. Can you remember a group of children who sat together at a certain lunch table? Had a classroom all to themselves? Were different somehow, but you didn’t know exactly how?

I remember those children. And until nearly seven years ago, I knew next to nothing about them. They are atypically developing children. Children with various disorders and diseases. Mental and physical abnormalities are common in such cases. And, as I’ve experienced, cruelty and unfairness is easily dealt to children with these challenges. We know there are bullies, and sometimes we do things ourselves that we aren’t even aware that we’re doing it. It’s pure and simple. Ignorance on any subject forms scrutiny. Judgment. That’s why I’ve dedicated myself to do my best to help those come to know about these children with these challenges.

What makes me qualified to do so? Why should you listen to what I have to say? Well, because I live in a situation where I’m educated every single day of my life on the subject. Nearly seven years ago, Skeet Lee Creech was born with a genetic defect called Down’s Syndrome. A gene disorder, also known as Trisomy 21, affects the twenty-first pair of chromosomes. Instead of two copies, there are three, causing mental and physical disabilities.

I am a sibling of a child with special needs.


Now it’s hard to wrap your head around the concept of “special needs.” I know it was for my family and I. Here we had a child with mental and physical disabilities in a family where we’d never experienced anything like that before. Three healthy, typically-developing children with no health concerns, mental or physical, of any kind. And when Skeet was born, we were thrown kind of a curve ball. We didn’t have the experience. The knowledge. We were ignorant on the subject.

For years my parents found it hard to accept that their child was born with a possibly debilitating disability. Depression was seldom. Commonplace if we thought about it too much. But even so, that’s not to say that we didn’t love Skeet unconditionally. It was a loving, irrevocable relationship, and still is. He’d stolen our hearts. Lifted our spirits with nothing but a smile. But even then, it was hard to accept emotionally that our beloved Skeet would have to live with these challenges for the rest of his life. Heart problems. Delayed physical and mental growth. Poor immune system. Countless tests and checkups and endless doctor’s visits.

Then we got more news. At age three, Skeet had been diagnosed with Autism. A mental disorder, confusing and hard to understand for even the smartest doctors. It affects levels of sociability. Most children with a form of Autism struggle with the concept of relationships. It’s sometimes difficult to make friends. Even relationships with family members. Some even appear that they prefer to be alone. As babies, some do not cry. Most do not talk until much later in development. Their muscle tone can be loose and floppy, and hypersensitivity is not uncommon. Some must follow certain pattern religiously, making it a must-do routine in their day. And some even excel amazingly in intellectual or artistic skills. Most savants have Autism. Autism is very hard to understand, and not much is known about it. A book that I highly recommend is Thinking in Pictures by Temple Grandin, a scientist, college professor, livestock consultant, inventor, and autism advocate who has high-functioning autism. It’s a wonderful book on how she, a person with Autism, sees the world and life. Nearly my entire family read it and had a new found respect for how people like Temple and Skeet may see the world.

It was very hard for my mom and dad when Skeet was diagnosed. It was like another heaping load on our already full plate. But still we did not give up. My parents, wanting to give him anything and everything he had the opportunity to achieve, consulted with various therapists and special education teachers. Today, Skeet goes to speech, physical, and occupational therapy at least twice a week, where they practice on the skills he already has and builds on new ones. One step at a time.

Eventually, my parents came to terms with the idea of Skeet having Autism. They realized that when the doctor handed them the paperwork, they weren’t receiving a different son. He was the same happy, loving, ecstatic Skeet we’d come to love and cherish dearly. He has his own funny, happy, quirky personality that brings a smile to our faces each and every day of our lives. He loves music, Mickey Mouse Clubhouse, puppies (any animal really), being outside, milkshakes, anything and everything any "normal" kid would love and enjoy, if not more so. And, he has a very heartfelt love and devotion to his family, which is evident through his bone-crushing hugs and too-wet-but-okay kisses. And believe me, we accept every bit of it.

For me, though, throughout the years of doctor’s visits and therapy sessions, I developed a sort of mama-bear syndrome. I wanted to protect him. From everything. The world really. I didn’t trust it. I still don’t. I’d seen how kids treated kids like Skeet in school, and I didn’t want my little brother to ever have to experience anything like that. Also, it was hard for me to not view the therapy sessions as somewhat harsh. At times when they were trying to get him to do something he didn’t like, he’d get frustrated and upset. It was almost like a reflex that I had to control. Not to jump out of my chair and tell them to leave him alone and let him do it on his own in his own time. But, I came to realize that that was detrimental to his development as well.

The bottom line is this: Children like Skeet can do absolutely anything any other kid can do. Anything. It just may take more time to get there. That’s it. So, I had to come to terms that Skeet needed to be pushed. He needed to be tested to his limit. Therapy hurts, but like anything else, it’s how we learn and survive. It’s essential. This is illustrated through Joseph Layden and Michael E. Kersjes’ book A Smile as Big as the Moon: A Special Education Teacher, His Class, and Their Inspiring Journey Through U.S. Space Camp. A true story of children with special needs, Autism and Down’s included, who accomplish something society never thought possible. A wonderful story that inspires me and moved my heart.

So our lives have been taken on a sort of scary roller coaster ride. One with loops and twists and turns. But, we’ve held on to our straps. We’ve endured and so has Skeet. Down’s or no Down’s, Autism or no Autism, he’s still what we all are. A human being. A human being with challenges. If you don’t think that’s the same, I dare you to bring me someone who doesn’t have any challenges. It’s plain and simple: There are none. Not in the entire world. We all have problems, whether it be in math or English, or socially. Maybe we have a hard time making friends. Figuring out that last few problems on our math homework. Writing that English paper due Tuesday. Fact of the matter is, we all have challenges and we overcome them by learning from our mistakes. We grow and we build on what we have until we grow stronger and more resilient. And that’s what we’ve helped Skeet through every day of his life.

He is my world. He may have parents and friends and family who love him to death, but I am Big Brother. I’ll be there for him for as long as I can. Forever. Always helping him grow and being the best he can be and not what’s expected “typically.” He’s influenced me so much. So much so, that I’m currently enrolled in school to become a therapist to help kids like Skeet meet their own full potential. He’s helped me learn from mistakes that I didn’t even know that I was making. He’s my light in our world of ignorance.

All kid’s need someone to lean on. To help them in this scary world. Add a challenge or two, whether it be Down’s Syndrome or Autism, or even a hard time with math and it can be downright terrifying. But no matter what their circumstance, every child needs a big brother to love them and help them make the next step. And we can be that person to help them do so.

Previous TLT posts on Teens and Autism @ Your Library:
Teen Issues: Autism and Libraries
Teens, Autism and Future Horizons
On the Spectrum and At Your Library (guest post)
Autism and Libraries: a q & a with J. D. Kraus

6 comments:

  1. This is brilliant. Honestly.

    Last year I participated in a program called 'Freiwilliges Soziales Jahr' over here in Germany, which you would translate with something like voluntary social year. I worked in a kindergarten for kids with and without special needs with kids from 1 to 3. It was the best year of my life so far. And I can totally relate to a lot of things Cuyler writes about - also thank you very much for recommending books on that topic, they are totally on my wishlist now.

    But the most important thing I'd like to stress again is: For real, we have all special needs. We all have those things, some are bigger some are smaller, that make life hard and that make us struggle. Just because it is more obvious what weaknesses people with Down's Syndrome, autism or any other disorder have, it doesn't mean they are so much different than any of us. They are as different as every person is different from the next one. That's it.

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  2. Thank you, thank you, thank you! I love this post. Shared it on FB and now sharing with my family and friends.

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  3. I just read this thanks to Angela. It's beautifully honest and really hits home. Thanks so much for sharing this.

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  4. Yes that's a very good blog post about Teens and Autism. You know I have a slibing that has autism also & he's non-verbal. But anyway you did a great job posting about your borther with down-syndrome.

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  5. Anonymous1/24/2013

    I am currently participating in an Autisim program, and I am learning more about this area of development, thanks for sharing your experiece, keep the good work up.

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  6. Beka Josephus2/03/2013

    These are 2 of my baby cousins. Both very special young men. :)

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