I Saw the Autism in My Son
Most days I don’t think about Autism. Not the word or the disorder or anything to do with it. Cooper is just Cooper and he is who he is. And that’s that.
Dare I say I was getting cocky. I may even say I let my guard down. Since we did the move and put Coops in intensive therapy there are parts of him that seem almost healed. Or normal. Or whatever PC word I’m allowed to say. Zero meltdowns, good transitions, improved skills, etc. Still no words but great nonverbal communication.
And then cabin fever happened. And we took a trip to the Mall of America that ended with me stealing a merry-go-round pony from a sweet little girl and her mom. And crying ugly faced tears while every other damn kid was happy.
And just like that I saw the autism. It came on strong. I saw my baby want to do something so bad and not know how to. I think my heart actually broke into pieces.
On Sunday morning we decided to take the boys to the Mall of America to walk around. I know Cooper and I knew that he would love the theme park type place that in the center of the MOA. He loves noise and lights and people.
We took a walk through the theme park to get a feeling for the situation. Cooper was ecstatic. And the best part…it’s loud in there. And all the kids are being maniacs. And we blend right in. Although if you looked closely you would notice some telltale signs. For one, I’m wearing a tank top in February. Why you ask? Because I am sweating buckets from the stress of this situation. You’ll also notice the squealing and the thrashing. And the over reaction to every sound and movement. The signs are there. I asked Jamie at one point if he thought there were other autistic kiddos here.
Cooper was in love with the merry-go-round. He couldn’t even contain his excitement about going on it. And if my kid wants to go on the merry-go-round we are going to go on the freaking merry-go-round. So, we got in line. I started by letting him stand next to me. This kid is over 40 pounds and we are nearing the point where I can’t hold him for long periods of time.
And he thrashed. And went limp. And pushed. And budged. He physically can’t wait in a line. Or stop moving. He just can’t.
As we walked around the ride to find a horse he was starting to get really, really anxious. And as his anxiety rose…so did mine. A woman and I reached a non-moving horse at the same time. And I claimed it. She gave me a rotten look. And I just smiled and plopped my thrashing, squealing, sack of potatoes on the damn horse. Or more like, I tripped and dropped him on the horse. Either way. That happened.
As we waiting for the ride to start moving Cooper alternated between screaming bloody murder and laughing. He wanted to do it so badly. I could tell. But…he didn’t know WHAT to do. He didn’t know HOW to enjoy it. He just knew he should. It hit me. This is the autism.
And I looked around and everyone was staring at me. I’m not lying or exaggerating. Everyone was staring at me. And Jamie was holding Sawyer a few feet away and smiling and waving trying to help. And I freaking lost it. I started sobbing. Everyone was snapping pictures of their happy kids and I was trying to not strangle mine. And I saw the future. Fuck. He is going to be 10 and then a teenage and then a man and I am going to be holding him.
I cried the whole 5 or 6 times it went around. Cooper calmed down and loved it. But, still, could not express it in a typical way. He did a lot of screaming. And then lost his shit when it ended. And his world truly ended when Dad took Sawyer on the ride. Sweet little Sawyer who waited patiently for his turn. I did my best to hold Cooper’s hand while Sawyer rode but again…I am not always strong enough. He melted down and darted and went limp and pulled out every weapon that he had.
We tried to walk around more after that but Cooper was done. The problem is that he didn’t want to actually leave either. And it was the perfect storm of shit. Elevators were broken, coats wouldn’t be worn, goldfish were thrown, and it was a whole mess of bad.
He screamed the whole way to the car and most of the way home. Jamie and I stared ahead and Sawyer ate popcorn and for 5 seconds (maybe 10) I hated him for being like this. We would say a few things here an there. “He’s not ready to leave the house.” “It’s not fair to Sawyer.” “God, he’s messed up.” And, “I really thought he was high functioning and this is way to damn hard.”
So, if you were to ask me what autism is I would describe that moment. It’s the feeling of being trapped and utter desperation.
I know that feeling of struggling, my son is only three and super heavy and his sister is 18 months old and more severe. I just keep telling myself it WILL get better! PMA and all that 🙂
It will get better!! I agree. ??
Don’t lose hope!I told you last week we took Mason bowling and it was a completely different experience from the year before. He totally “got it” and knew what to do and had a great time whereas last year he just like ran around the bowling alley looking at shiny things hanging from the walls with no interest in playing the game and screaming every time we tried to get him to stay with us in the lane. A lot can happen in a year especially now that you have him in the right place! Love you!
I’m considering drinking more. ???
LOL!!! Well…it will make the time go faster…
I’ve had many of those moments, with my son falling apart during a “fun” activity, the crowd staring at us, and me unable to manage him physically (he’s also 40 lbs). I keep thinking those moments will stop happening, but so far they haven’t. I don’t know how other parents can be so hopeful…perhaps because they see improvements in their child? My son only seems to be sinking further into autism despite therapy, not lifting out of it. It reminds me of when I was diagnosed with RA and was in a support group…I was the only person in the group that didn’t respond to medical treatment, and then no one wanted to talk to me anymore (because they didn’t want to BE me). I shudder to think the same thing is happening to my son…that he is facing the worst possible outcome by not responding to therapy. It leaves me feeling very unmoored and confused.
Speaking of drinking more…time for a glass of wine, since my kid is at speech and OT right now! 🙂
You should get a Baby Nari, a baby carrier that looks like an oversized fanny pack which your baby/toddler can sit on top of it. My 36 lbs toddler always wants to be carried around. It looks silly, but I wouldn’t have lasted more than 5 mins without the Baby Nari. It is only for toddlers up to 44 lbs though, but just to want to let you know about it. http://www.babynari.com/
Thanks Susan!
Hi
Your blog is literally a therapy for me. I just had a moment like that at the mall yesterday and I was feeling lost and in tears. Even my husband turned away and took our 6 month babygirl who was enjoying being out with Daddy. I pray that it gets better.
What intensive therapy is cooper, is it private or the OT & speech therapist at the preschool.
I am so glad I can help you! I remember when I would find a blog and read the whole thing from start to finish and try to force my husband to read it too. 🙂 So Cooper goes to a 3 hour a day preschool in the mornings at our local elementary. They focus a lot on education there and he gets small doses of speech and OT. And then in the afternoons he goes to an outpatient treatment program with only autistic kids that is more intensive therapy. They focus on life skills and basic functioning. He is on the waiting list for private speech. Prior to moving we had Cooper in private speech and OT and it was a freaking gong show. He wasn’t ready. I believe he is now. Hopefully!