I think Cooper falls in a really weird place on the autism spectrum. In some ways he is severe. He doesn’t speak. He has zero self-care. And hardest of all he has no self-awareness. Cooper doesn’t know he is autistic. He doesn’t know he is different. He doesn’t know that he has no friends…He most likely doesn’t know what a friend is.
But on the opposite side he isn’t violent. He isn’t mean. He is easy to care for. He smiles and laughs and requests hugs and kisses. And I am so thankful for these traits. He is sweet and adorable.
But, nevertheless, we are in a really weird spot on the spectrum.
I was waiting at Fraser yesterday and I was observing a little boy playing in the waiting room. Every so often he would ask his mom a question. He seemed so normal. He was sitting still. He was playing and he was talking. MIND BLOWN. Then he said to his mom, ‘remember when we came here last year mom and they said I learned different?’ And this mom didn’t even look up. She was on her phone. The little boy went onto say, ‘am I really different mom? I don’t feel different.’ I could not stop staring. I wanted to shake this mom and say ‘Pay attention to your damn child!! He cares that he is autistic. Talk to him about it. Please!!’ But she never looked up.
I am jealous of the parents that have higher functioning autistic kids. That’s a riot right! I am no longer jealous of the parents with ‘normal’ kids. I am now jealous of the autistic kids…but the more typical ones. The children that talk. Or play. Or try. Or most of all the ones that know they have a disability.
I feel like I was robbed yet again.
So, on this 5th year of our autism awareness journey I am mostly just pissed.
Last year we chose to go on an Autism Walk. It should have been a nice event. We walked around this beautiful lake. We invited Cooper’s grandparents. It was a beautiful day. Except that our autistic son did not get the agenda for the day. Or the purpose. Nor did he want to be there.
So, out of the 1000+ people participating in the event…we once again had the most autistic child there. He didn’t participate. He didn’t walk. He didn’t ride in the stroller. What he did do was run and dart and roll and scream and throw. He made the event miserable for Jamie and I. It was a 5K and one of us carried Cooper the whole time. We ended up quitting early and fighting our way back to the car and vowing to never do it again. Like most events we participate in with Cooper it ended up being a nightmare.
It almost makes me chuckle. I have the only autistic kid that can’t participate in the autism walk.
There is no real purpose of this post I guess. No bigger deeper meaning. I’m just at a mad point in the journey. I have been posting pictures on Facebook that show what autism looks like to me. It’s been emotional and uplifting and I love that I am spreading awareness, but pictures don’t show what it feels like to be an autism parent.
There are pictures of objects lined up, beds torn apart and messes that Cooper has made. But there are no pictures of what it feels like to have a child that doesn’t speak to you. Or play with you. Or live in your world.
Pictures cannot show the pain I feel in my stomach when I hear about a parent registering their child for kindergarten. Or just seeing the kindergarten pamphlet in my mailbox. Or having a doctor ask me if Cooper has any loose teeth…knowing that I have no idea and he would never tell me anyways. There will be no Tooth Fairy. There will be no magic for us. Or when I hear about a child joining a sport. Or going to birthday party. Or having play dates. Or saying the cutest things.
At this point we still have none of it. And it used to be really heartbreaking. Now it’s just an empty spot.
So, on this Autism Awareness month, I have to hold back saying what I really think and feel because I don’t know how to be honest about it. I can try to tell people about the loneliness….I can even share pictures of the heartbreak….but I have absolutely no way to truly describe what it feels like to be the parent of a nonverbal autistic child. It’s too hard.