I Don’t Know What’s Wrong

42b978e5c4247e082d03fcc4cf6d7564I made the decision when Cooper started at Fraser that either Jamie or I would pick him up 5 days a week. I did this because Cooper is nonverbal. And he is getting highly intensive therapy 5 days a week. And if I don’t pick him up I have no idea what is happening in his world.

Imagine never being able to ask your kid how their day was. Or what they did. It really, really stinks.

So every single day, either Jamie or I, sit in the Fraser parking lot and wait for him to finish up. It’s not ideal, but it’s also the only option.

Fraser is an interesting place. There are days when I go in and the kids seem so regulated and I guess for lack of a better term…normal. But more often then not, Fraser makes me uneasy. There is a lot of screaming. And screeching. When I wear braids I know that kids are going to come up to me and touch them. I’m going to get bumped and jostled. And at least one day a week I see things I don’t want to see.

But, I can say from the bottom of my heart that Fraser is amazing.

And the best part…every single day Cooper is excited to see me. He waves and runs. And shows people that I am here for him. Pretty dang great. And his reports are amazing 99% of the time.

Well, for the last 2 weeks or so I have been getting icky reports. Cooper is very unregulated, stressed, and anxious. He can’t stop moving and often doesn’t want to participate. And he’s throwing. Lots of vocalizations. And not the good kind.

Cue anxiety. And sweat.

I thought the first couple times were a fluke. His days are long. He is overtired. Or maybe it’s a change in his therapists. But I thought it would get better. Fingers were crossed.

Fraser is our rock. Think of the all the best therapists in one place. They get autism. They get my kid. And they truly want him to succeed.

Well, yesterday when I picked him up his therapist and aide were waiting for me. I plastered a fake smile on my face and asked how it went knowing this was going to be bad.

They asked me what’s changed at home. Each day Cooper is a bit more challenging.

Nothing has changed. It could be anything.

His diet is atrocious. He is always constipated. He is always tired. The kid physically can’t sleep past 6 am…sometimes even 5 am. He is nonverbal. He can’t tell us what he wants.

I seriously had a fight or flight moment. I know that these people love Cooper. Even as they were telling me his struggles they were hugging him and engaging him. But I wanted to go. I felt really uncomfortable.

I don’t know what has changed. I don’t know what is wrong.

I think that is why it makes me so uncomfortable. I don’t know how to fix it. I don’t see any triggers. I don’t see any changes.

It could be his ears? Maybe ear infections?

It’s like a needle in a haystack.

If you read about autism and nonverbal there is often a trend….the older a nonverbal kid gets…the more difficult they become. This is because they WANT to communicate and can’t.

Think of a newborn baby. They obviously can’t talk but their needs are obviously very, very basic. Cooper is almost 5. And he still can’t communicate what he wants or needs. Imagine the frustration.

His therapist thinks it is the language barrier that is causing the frustration. We ended the conversation with a mutual understanding that we would tackle the problem and find a solution.

But, what if there isn’t one. What if it’s just inevitable.

I thought about it the whole ride home. I called people. No one answered. So, I thought some more. I have to fix his diet…take away the candy. Less sugar. More real food. Work on his sleeping habits. Black out curtain for his bedroom. Take away the iPad.  And figure out a way for him to communicate. And start Gemiini. I’m doing it tonight.

I will go home. Feed him dinner. Give him a bath. And put him to bed. And sprinkle in some fun. I can do this. I got this.

Sigh.

Cooper fell asleep on the ride home. He woke up once we were home and decided to scream for 20 minutes for his ipad. I tried taking deep breaths with him. And distracting him. He got more angry. I took his shoes off. He kicked me. I tried feeding him. Giving him milk. He ransacked the living room for the iPad.  I tried everything I could think of. And then in my desperation I asked if he wanted a sucker. He replied with ‘yeah.’

And just like that he was happy.

I was so exhausted from the all out meltdown that there was no working on anything. I didn’t want to fight another second.

Every day is like that. Survival instead of improving.

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