I thought by now I would have mastered autism. I truly did. And that I would be the one giving advice to other mamas. I thought by now that my nonverbal boy would be talking away. And potty trained. I thought by this time we would be so much farther along.
We are not. In some ways we are in the same spot. Standing still.
I just spent 5 minutes scrolling through Pinterest. I entered one word into the search box…Autism. I wasn’t sure what I was looking for. Maybe hope. Or maybe something to trigger the big cry that’s sitting in my chest. We are really struggling with potty training. And transitioning. Lack of language. Diet. Lack of awareness. And a mother that fears that this is it. This is my future. Cooper is going to be five. Five efffing years old.
The list of things he can’t do far outweigh the things he can do. The gaps are getting bigger.
I am spiraling. I can feel it coming on. It’s creeping up fast.
We spent the weekend at the lake. And the reality and normalcies of the world were right in my face. The normal children were everywhere. Yes, I said normal. And that’s the exact word I choose to use. I watched them all closely. Because Sawyer was right there with them.
Sawyer dug a hole. Cooper ate sand. Sawyer filled a dump truck. Cooper threw sand at kids. Sawyer brought the truck down to the beach. Cooper ran on the dock. I frantically ran, with a broken ankle to catch him all the time knowing if I ran he would run. I tried to stay calm and practice what we learned. “Cooper. Stop. 1, 2, 3. He thought it was a game. Sawyer pushed the truck back to the sandbox. Cooper screamed. Rolled. Hit his head. Sawyer made a friend.
My two sons. 2 years apart.
It’s not fair. I thought by now this would have passed. I thought he would have learned to see the fun that could be had. I thought he would have learned to see the other kids. See his brother. See the world.
Cooper won’t really do anything but watch his movies. He may go down a slide once or twice at a park or throw a rock into a lake but then he is done. Just like everything else.
I look at pinterest and I feel like a failure. I should be doing more for his diet. Working on potty training nonstop. Taking the iPad away. Shutting the tv off. I need to teach more. More. Always more. More patience. I should be doing PECS. And getting more services. Add it to the list.
I am a logical adult. He needs to be learning. Interacting. Socializing. He needs more therapy. More. More. More. But I work. My husband works. I am tired. He is tired. Everything is a challenge. Everything is a fight.
I need to do more.
I spent the quiet drive home last night thinking about Cooper growing up. And do I put him in a group home. Yes, cart before the horse. But the thought crept in after I struggled to drag his screaming, kicking 45 pound body off of a dock.
I truly believed from the bottom of my heart that his autism would improve. Not be cured. But improve. I thought by now he would learned to say words. And cope. And make a friend. Get a hobby. Learn to play. I thought by now it would have gotten better. I thought by age 3. And then age 4. And 5 is around the corner. And I can’t even think about it. The thought of him being 5 makes me ill.
I know where this is coming from. It was the other children. I watched them play. Make friends. Run around. Swim. Fish. Dig. Build. I have never played with Cooper. Never.
Cooper watched movies.
I realized this weekend that he won’t be able to go to a public campground much longer. Not unless his awareness improves. It was a hard moment. I started to spiral. I am not going to be able to bring him much longer. And I know that people don’t believe me. And I know that they think I am lying when I say, ‘We can’t go there or We can’t do that.” It’s not my choice. We just can’t do that.
I was chatting with a friend about Cooper. And I said…‘It just isn’t fair. Why me? What did I do to deserve this?” And I got a response I have been seeking out since day one. He said,
“You are right. It really, really sucks. And it isn’t fair. You got dealt a tough hand kiddo. And that’s a fact.”
I just looked at him. No sugar coating it. No trying to force me to find the good. The joy in it. Because at that moment I didn’t see any.
I had to choke back the tears that immediately pooled in my eyes. He was right. It really does suck.