I had an eye opening moment over the past week and last night regarding my oldest son, Will.
I have been asked to speak next month regarding autism awareness in a few places in our little town. I have been doing more and more research regarding such. Last week I was discussing some facts regarding autism with my husband. During our conversation Will walked in and over heard one of the facts…. “Autism is the fastest-growing serious developmental disability in the U.S.” … Will got a very serious look on his face and asked “So, mom… autism makes people grow quicker, right?”…. I replied with – “No, son… you misunderstood me.” I read him the fact again. He said he understood what I was saying and proceeded to tell me that there was a kid in his class that he thought had autism. I asked him why he thought so. His reply was because the child talks really loud. I explained to him that just because a child talks loud does not mean they have autism. I told him that he was not to diagnose or to go up to a child and tell them “I think you have autism” – only a doctor can diagnose. After we had our talk – I realized that I have not really discussed too much with him about autism. The only time I have done so was when we first got the diagnosis last year. We live with it every day and I just assumed he understood.
Last night I sat down with Will and we talked for over an hour. I answered questions he had and then we wrote down his thoughts about autism. I figured out that my little 9 year old was very concerned and had a lot of eye opening information for me. One being – he thought Progeria (a rare genetic condition that produces rapid aging in children) was one of the signs of autism. He told me he watched a video on a child that was 17 years old and died from autism because he aged so quickly. Come to find out, I knew exactly who he was talking about because I watched a documentary on this child on HBO. It was about Sam Berns, a child with Progeria – here is one of the videos on Sam – and what an amazing child he was.
It broke my heart – Will was so confused. He thought his brother was going to start growing old very quickly and would die young. I had no clue that he thought this. Here I am trying to spread autism awareness to everyone else and I have not been educating my own child.
So, he and I sat down and I asked him questions . He answered the questions… then I explained, on his level, things he did not understand. I felt like a bad mom – I teared up a few times… I had no clue Will was feeling and thinking the way he was about autism. He was opened and honest. If you know Will – you know how he is… he holds things in, takes things in, ponders on the subject, so laid back – so innocent….
At the end of our conversation – he wanted to write about his brother… so here it is… in Will’s words.
My Brother, Carter
by Will Hibdon
So, what is it like to have a brother with autism? It is like this… my brother, Carter, keeps me company. He is the only person I can play with in my house that is a kid. He is fun to have around sometimes. I play games with him, I ride my bike with him, I play with our dogs with him, he plays transformers with me. He makes me laugh when he doesn’t even mean too. He is a good little brother to have.
Sometimes I get upset with him because he tries to do what he wants to do and doesn’t think about what I want to do. He can make me cry because he can be mean sometimes. He can be really loud and I think he is yelling at me. He doesn’t really share that well and everything has to be his way. He doesn’t understand that I need time to be all by myself. He always wants to be with me. Sometimes I just need my space because I am growing up and I need alone time. Carter repeats things over and over again and will not leave me alone when I ask him to stop. I sometimes have to get really ugly with him so he will leave me alone – then I feel bad because I don’t want him to feel bad. I want him to know I love him – I don’t want to hurt his feelings. I know he can’t help it but sometimes it is really hard.
What do I think autism is? It is something that can make some kids not be able to talk. Some kids can talk but they have problems letting people know how they feel and what they are thinking. It is really hard for them. It can make them clumsy. It can make them have break downs… ya know, cry when they get upset over something they really shouldn’t get upset over – they just can’t help it. It is hard for them to make friends and they can get bullied. It hurts my heart. The good thing to know is autism can make people very smart. They can become scientist and doctors. My brother is very smart and I just know he is going to be a scientist.
What is it like living in a family that has a member with autism? Sometimes I feel like my brother gets a way with things that I would not get a way with. Sometimes our house can be noisy because of my brother. Sometimes I feel like mom and dad pay more attention to my brother than me. Sometimes I get jealous. But, if I didn’t have my brother around I would be lonely. He does make me happy. He is different and I know that is okay. Mom, you always say we are all different. My brother makes our family complete and crazy sometimes. I love him and he loves me.
When Carter grows up I wish for him… To get married, to have kids, and to have a good job. I want him to be able to do everything I know I will be able to do. I want him to be happy. I wish that he has a great life – and doesn’t have autism anymore.
Eye opener, huh? Yep… it truly is for me.
So – I decided to talk to Carter about his brother, Will.
My brother, Will
by Carter Hibdon
My brother is my best friend. He plays with me. He likes to play games with me. I really like to play with Lego Mixels with Will. He can put them together really quick. I love Will. Will is my best friend. He lets me sleep with him. He wraps me in a blanket and plays burrito with me. He protects me from ghost. He lets me play with his toys. He is my friend. That’s all!
Funny how their perceptions of each other are different and some the same.
You are amazing, remember that. ~ me talking to my oldest, Will