Too Much

As I’ve said, Little Man has been struggling as of late. We have one more day of school. One. More. Day. He’s battling, but we’re seeing behaviors we haven’t seen in months. His toolbox is completely out the window. It sucks.

Yesterday, for Father’s Day, we went indoor cart racing. I was a little nervous about it, but didn’t really think it would be a big deal. It wasn’t ridiculously loud, and he would have a helmet on anyways. We watched four or five races. He seemed okay for the most part, although he was lashing out and had a bit of temper tantrum – more from being hungry and having to wait than anything else. We fed him, and waited for our turn.

When our race started, I hung back, not going too fast. I’m not much of a speed queen anyways – afraid of crashing or spinning out. I did pass him, and he seemed okay. But then people were passing  and bumping him, and he got stuck in a corner. He worked to get out, but couldn’t manage it. They had to stop the race and help him. He decided he was done, so they guided him off the course. Yes, we are that family that has to shut the place down. I was reminded of our ski trip last year when they had to stop the lift twice for us. He and I decided to ditch our second race.

We should have known. We should have seen it coming. We should have realized it would be too much for him – the speed of the people around him while trying to drive his own cart, his inexperience driving a cart, the noise, the anxiety of racing itself….too much sensory input, too much performance anxiety, too much stress. We should have seen it would happen. But he’s been doing so well, has come so very far.

I have to give him credit – he tried something new, something he wasn’t sure of. He did it, even if for just a brief period of time (I think he made it through three laps). We told him we were very proud of him for trying, because we are so proud of him.   While I felt defeated in a way, it also felt like a win, because he did try. Autism won for a moment, but it didn’t win the day. He may never drive a race cart again, but he did it.

The School Dance

Little Man is in seventh grade, which is technically  middle school around here. Middle school is 6th through 8th grade. His school though is really more of an extended, upper-grade elementary school, 4th through 8th grades (it’s 4-7 this year, and will go 4-8 next year).  They don’t change classrooms and teachers for every subject (he has math and science with one teacher, language arts and social studies with another teacher). They don’t have a locker room nor do they change for PE. The school looks and feels like an elementary school, for the most part.

The staff does realize their school is unique, which is great, but it also means they need to take steps as the kids progress to those upper grades on campus to prepare them for high school. With that in mind, the sixth and seventh grade leadership asked to be able to hold a dance for just their grades, for Halloween. I didn’t think anything of it when we got the recorded call from school with all the info. I didn’t think there was any way Little Man would willingly go to a school dance. So imagine my surprise when he brought the permission slip to me to sign! He wanted to go. All-righty then!

The dance was after school yesterday, running from 3pm – 4:15. I’d talked to him over the weekend and again yesterday morning he would have to stay the entire time as we were carpooling with his friend A, who is also in seventh grade. He seemed to get it. And he seemed okay with it. I told him to expect it to be loud.  “No worries, mom, I have my headphones!”

It was 3:20 when my phone pinged with a text. He said it was really loud. I told him to put his headphones on. He said he did, but it was still too loud. I reminded him I’d told him I was not going to pick him up early, and then when he asked why, I reminded him we were carpooling and it wouldn’t be fair to make A leave early when he was having a good time. Little Man sucked it up.

I arrived at school right at 4:15. I could see him pacing in the lobby. He had his headphones on, backpack in hand, ready to bolt out the door. One of my friends said he’d been there for some time, pacing and anxious. I could see the stress on his face. I don’t count it as a loss however. He went to a school dance. Yes, he only stayed in there for maybe a half an hour at maximum, but he went. He put himself into a social situation willingly.  He didn’t stay inside the entire time, but he went. My autistic child went to a school dance of his own volition. Isn’t that awesome?

Through His Eyes (and his ears, his mouth, his nose, his hands)

I was struck the other day that I get caught up in how I respond to Little Man’s responses.  Often I’m frustrated with what I  have to do to keep him calm and happy. And there are moments I just want to scream – into my pillow of course – when he makes a huge deal about a smell while I’m cooking, whether his beloved sweatpants are clean, his opinion on what I’ve made for dinner, etc, etc, etc.  But when I was reading through the reports from school pre-IEP meeting, it dawned on me exactly what it takes for this boy to get through the day, as well as how bombarded he is with sensory stimuli.

I tried to put myself in his shoes. I tried to understand what it would be like to try to focus, concentrate and learn when everything coming into his brain is so overwhelming. It made my head hurt. No wonder he lashes out, melts down, and falls apart. It has to be overwhelming. He’s typically exhausted by the end of the school day, and wants nothing more than to put on some headphones, pull out the iPad, and watch some videos. Most of the time, I push him through his homework and then just let him chill (granted he usually has most of, if not all, his homework done before he gets home from school). He’s earned that recovery time. We all need our moments of stepping back and just being. This is how he manages. This is what he does. And in my mind, he’s earned that time.

We’ve tossed around the question whether traditional school is the place for him given what he’s dealing with. For now, he is in a very good traditional public school. And as I posted last week, he is getting the help he needs. Is it easy for all of us? Not completely. But he needs to learn to function away from me, away from home. And although it probably sounds awful, I need that time away from him to refuel myself. As hard as it can be, we are both better when we are not together 24/7. Is that horrible?

The world will not quiet down for him. I can’t control all the smells that will come his way every day. He will not always be able to wear sweatpants. He is learning, at school, how to function with all that stimuli being thrown his way. But I will work harder to remember what this world is like through his eyes, and have compassion when he chooses to retreat at the end of the school day.

Through our course of volunteering with the March of Dimes, we’ve read of simulations given to NICU nurses and doctors what it’s like to be a preemie being poked and prodded all day long. I think someone needs to come up with a simulation what it’s like to be an autistic child being bombarded with stimuli all day long. Then maybe more people would be able to see the world through his eyes.