For summer we have been hitting up the Library for story time 2-4 times a week. Ty really likes the interaction with the kids, he loves the music and it gets us out of the house. He has also really liked that he can take home a book and a movie for a week and get a new one.
The last week the weather has been really good so when we get done with story time we head to the park. Sometimes there are a lot of kids. Other times there isn't.
Well this day there was a few. Not a ton. Ty is just fine going out on his own there at the park. We just let him go at it. Obviously he looks a little different when he is running. When you find out he is almost 5 people get a SHOCKED looked on his face cause he is TINY. ( He is about the size of a 3 year old)
A well intentioned mom comes and stands next to me and just says " I know someone with Autism."
I wasn't sure if she was wondering if Ty had autism or just had noticed he was different and that was her way of kind of breaking the ice. I said yes there were a lot of kids that have autism in the area. She paused. I said Tyler doesn't have Autism he has cerebral Palsy. Her answer was CLASSIC : Oh, I bet that is REALLY hard. I honestly rolled my eyes and said no he is a really good kid. Most of the time he is really good but yes we have other things we have to do because of the cerebral palsy.
Then she asked me if we had tried that GF diet. It really seems to help the kids function better. I told her that a diet wasn't going to help Ty because he has Cerebral Palsy. SHE KEPT ON! She said I shouldn't vaccinate him because he will be in worse shape than he already is.
I nicely said that Tyler has brain damage and he has cerebral palsy because of the damage in his brain and that a vaccine didn't cause it NOR will changing his diet. In fact if we change his diet he won't eat and then get even smaller.
I know her intentions were good. I have no doubt that she was trying to be nice or was just curious but I was a little frustrated.
The four walls of our house are not negative places. We don't always notice the things we can't do. In day to day activities we are not forced to see our delays. We cater everything to him no matter what his ability. It is times at the park or the pool or around others we are forced to see. Especially the stares from complete strangers and the lack of compassion, love and understanding from those who are suppose to love him
It is hard to not see that finding a sitter for him is hard because people are afraid of the disability and not willing to look at the kid. The sweet loving kid who has had to walk through HELL to stay alive.
It is hard to not be bitter and angry at God and question Why. Why does he have to hurt EVERYDAY? Why can't he talk and tell us what he needs or wants? Why do people have to be cruel, well intentions or not?
He is a great kid. He is a loving kid. He has a personality. He is funny. He is smart. But above all he is still a kid. Your knowledge of him can only go as deep as what you see if you aren't willing to ask or to participate in his life or care.
If you are the lady in the park, my hope is that you will ask about our child. Not give advice on how to fix him. Don't say you are sorry and that is really hard. Tell them that he looks LOVED not broken.