The Jiggly Thing on the Pressure Cooker

Every April, since 2013, we celebrate autism awareness and neurodiversity acceptance. On April 2, I put my blue lightbulbs on my exterior lights, to “light it up blue” for the duration of the month. I wear my “Different, Not Less” t-shirt.  I typically post many times throughout the month, to share stories of Wilson’s awesomeness, or to pull back the curtain a little on what life with him is like, in all its glorious beauty and daunting hurdles.

My porch light is blue and my t-shirt in the dirty clothes, but I haven’t been posting. I have been buried in work and momming and managing the ‘family business’ of a home, and groceries, and bills, and all the things we all do. I’ve been tired… no, not tired; weary. They are not the same.

This year it was all just too much to put in a few quippy words on social media. So, I decided to just let it go this time around. Until today.

You see, Wilson is in 5^th grade and will transition to a 6^th grade center next year. New building, new teachers and paras, new routine. I need to make sure he’s ready. I need to make sure they’re ready for him, so he has his best shot at his best shot. It will all move so quickly now.

Wilson didn’t start talking, communicating verbally, until he was about 8. There were one- or two-word answers to very pointed questions, a lot of scripting and puppet shows, but anything resembling conversation is recent and came after a lot of work. A lot. Hard to push into curriculum when he can’t tell you what he knows. Then covid hit and we were juggling school at home, and I learned a lot.

My brilliant boy who taught himself to read phonetically long before he could converse with us… the boy who spelled Shakespeare with little plastic letters when he was about 3… the shining star who has memorized the entire globe – every country, province, state, flag (and is working on US counties), population, fun facts, alpha order, population size – knows ALL the Pokémon, is better than most high-schoolers at the periodic table… This kid was so far behind on math, reading and comprehension, and don’t get me started on his handwriting.

We got an amazing tutor, revamped his 32 page IEP, and pressed into the academics. He is so smart. So capable. Loves to learn new things and master them. This kid will not, as his diagnosing Dr. at age 2 told me, live in my basement and spend his days with a job he might be able to get online, or maybe end up in a group home on public assistance. No sir.

This under-funded, under-resourced, overworked, education system, that does not really understand nor embrace meaningful inclusion and is still trying to learn to teach kids with autism, will not leave him behind, or push him through without giving him his best shot.

This narrow-minded, “if you are different, you make me uncomfortable; if you communicate differently, then you must be ignorant or slow” society that is not built for nor good at making room for those with a more intense sensory processing system, will not leave him out.

So, I work hard to make a way.

Life is therapy and the world is where we live it. We pressed into speech, so he could learn to talk and be better at telling people what he knows. We got him an amazing tutor, to help him catch up academically. I worked tirelessly for 15 months to raise $15,000 and outfit his school with the best sensory room in the city – maybe the state. I meet with the school, talk with the teachers… a LOT. I volunteer on the state’s Special Education Advisory Board and just applied to be a parent representative on the MO Autism Project parent committee. I read and study and learn about special education law, IDEA, emerging practices… and I listen to the voices of those that have gone ahead of me. Parents, adult autistics/adults on the spectrum. We take Wil out into the world and on a lot of adventures, so he can learn to move through a world that largely tries to shave all the points off his brilliant, brightly shining star to make him fit into a round hole.

And it is working. He is catching up in school and spending more time in GenEd. He has kids he considers his friends, and he loves them fiercely, even when it’s hard or the gears are just a little off. He is learning to manage his sensory load when it is something he really wants to do, like RUSH Fun Plex, or Disney World. It wears him out, I mean it really wears him out, I can tell, but he is growing the muscle and making a way.

But here is where I am failing him. Failing Him. He is 11 years old and he is having all the feels. I have spent so much time on all of the above that I forgot to get myself and him ready for the emotional tole of it all.

He desperately wants to be a good friend, have lots of good friends, and he knows he just can’t quite make it work. He can’t quite have the conversations that make relationships thrive. I see it. I feel it. And I can tell he is feeling it.

He hears more than we do, smells are stronger, tastes are more pronounced, textures more pronounced… and he feels more. Something makes you feel happy, he feels almost manic joy. Something makes you uncomfortable, he is afraid and goes into fight or flight. Something makes you sad, he is absolutely heartbroken. But he wants to fit in, so he pushes himself right up to the edge, and sometimes right on over it.

That’s where we’ve been lately. That’s the realization I have had. I have been working so hard to help him fit in a world not yet fit for him that I forgot to help him manage how he feels through it all.

The last couple months his emotions have been on overdrive. When he feels too much, it must go somewhere, and we haven’t packed his toolkit with all he needs.  When the tools you need are not at hand, it’s like a pressure cooker without that jiggly thing on top that lets out excess steam. Ever see a pressure cooker pop? That’s been Wil. All those feels have found their way out in a pushed chair, or a thrown book, or feet running down a hallway, or screams, or tears.

So, we’ve been working on coping tips for him – deep breathing, counting backwards, ask to go to the sensory room, pray. And really, really taking care to sensor what he is watching so that near-photographic memory of his isn’t pulling from the wrong thing. Cartoon ‘violence’ is all fun and games, until an autistic boy who hasn’t been taught how to manage deep emotions let’s that play out in his head and thinks, “ok, I’ll do that. It works for SpongeBob.” (And don’t get me started on some of the shit people put out on YouTube that is near impossible to filter out. Coming for you, SML.)

Enter today. He’d had a really, really great week, but this morning I knew he was off. He just was ramped up from the time he woke up. As I put him on the bus I thought, “just make it through today buddy, the weekend is almost here.” We were so close…

I had just gotten out of the shower and was packing for my business trip to Idaho for an event this weekend when I got the call. I needed to come get Wil. He was full-on meltdown and had hurt a para, a student, and a teacher. When those emotions boiled over and burst out, he tried to push past his teacher, but pushed her into a shelf that then fell over on a student. No one was seriously hurt, thank God, but faced with seeing what he’d done, Wil was done in. Inconsolable.

By the time I got to the school, he was in the hallway, screaming, crying, spinning out. Everyone was calm, just trying to keep him safe, keep others safe, help him calm down. They had to clear the room and lock the door to keep him out – he wanted to go in so badly.

I can’t explain it well… just, it was so hard. Heartbreaking to see him in so much distress and pain. Excruciating to see him wrestle with so much emotion and not be able to calm himself down. So hard to sense the emotional pain he was feeling and know he was trying to manage it and just didn’t know how. He’d start to calm down then spin back out. Crying so hard he was choking. So very hard to see the other kids trying to come use the bathroom, or walk past in the hall, and look at him so quizzically, stare and not understand. Just so hard.

All the while, I’m just trying to let him know he is loved, he is OK, he will be OK.

I am so thankful he has a team that sees him and understands. (So thankful we just had a 2 hour meeting about reassessing some things, bringing in the school psychologist for a functional behavioral analysis and plan.) This wasn’t a tantrum, it was pure pain, frustration, fear, and sadness all spinning in an emotional blender with no off switch in his reach.

After 45 minutes, I was able to get him calm enough to get him out the door and headed to the car. He cried the whole way home, saying, “I’m never going back to school again.” He was wiping tears from his face in frustration. He was able to express that he was upset with himself, scared of how he’d acted/reacted. I just kept reassuring him he was ok. He was loved. His friends would miss him. His teachers were not mad at him. We were going to make this better and help him find his way though when he feels so much.

We got home, he got calm, he got a smoothie and a snack, and I threw some crap in my bag, thankful the flight was 20 minutes delayed. I was able to facetime him on my layover and we sent hugs and kisses over video. Tomorrow, I’ll book an earlier flight home on Sunday, no matter the cost, so we can take a nice long walk by the river and reset, and I can reassure him he is loved, and it won’t always be this way.

Then next week I’ll dig in… learn more, find some resources, and map out a new plan so we can make a way for his star to shine brightly once again.

This is autism life. This is neurodiversity. And we will make a way.