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The more time I spend with him, the more comfortable he seems to get. I guess. But maybe that’s just hopeful thinking. I spend seventy three to eighty two percent of my time trying to convince the child to put clothes on. He hates how they feel against his skin, and unless I can convince him of the logical reason as to why he needs to wear them, he opts to not. Always.
Adam and Eve never wore clothes, so why should he?
Which wouldn’t be so tricky if he wasn’t coming into puberty and developing into a man. I’ve become a pro at averting my eyes.
My day to day life has become about taking the logic and reason aside and analyzing what Matthew needs. It’s not about what I, or even Thorthinkshe needs. It’s about what Matthewactuallyneeds.
It’s hard as an empathetic human being not to try tofixa child you know is struggling sometimes. It’s even harder to have learned that I’ve been wrong this whole time. Matthew doesn’t need to be fixed. He doesn’t need to be wrangled into my, or societies ideals of what normal is. He’s perfect just how he is. And the more time I spend with him the more I utterly adore him.
When we’re out and about, other parents of autistic kids see similar behaviors and relate. I do it too. They are far more likely to approach me and start a conversation than neurotypical parents. I’m making fast friends with a couple of the neurodivergent parents at the park, and the staff at our favorite autism friendly eateries know us both by name.
I haven’t earned full acceptance by these parents yet. But it’s been super nice for some of them to take the time to talk to me. I guess most of them are cautious of disrupting their own routines, too.
Speaking to the people I’ve met sets my mind at ease about some of the things I’ve been feeling, internalizing so I don’t let the word vomit get the best of me and spew my thoughts at Thor.
While I haven’t had anyone say anything to me about Matthew—God help it if they ever do—Some of the parents at the park have had issues. They’ve had people say their kids are spoiled little shits, that it looks like their kid has asked for something and never gets told no.
Many relate to my struggle with the unpredictability, trying the same thing every day and getting different results.
These children are defined by their diagnosis, instead of who they are as people. And I’m ashamed to admit that until my niece was born, and to some extent even until I met Matthew and started to get to know him, in many ways, I was one of the people who defined them.
Some days, Matthew is completely non-verbal. Even at eleven years old he’ll sit in silence for the full day, and no amount of coaxing or subject shifting will draw him out of himself. Other days, he has no filter, and the world requires him to have a filter.
The more time I spend with him the more I’m learning he can’t cope with emotions. It’s most definitely not that he doesn’t have them. It’s like his body and mind can’t decipher what they are or what to do with them.
Nothing is hypothetical in Matthew’s world.
Nothing is easy.
Everything needs to be the same. The exact same.
I’m exhausted. I’m mentally and physically worn out, and my nerves feel like they’re constantly raw and fraying.
This morning was the worst morning since I came to work for Thor. Matthew became upset and lay on the tiled floor banging his head off of it. When I tried to intervene, he hit me instead.
I’m pretty sure I have a shiner, and I have some scrapes and bruises from him clawing at my arms while I tried to keep him safe, but mostly I have a heavy and disappointed heart. In moments like this, I feel like I’m failing him.
After snuggles and apologies, we had some down time. He’s been in bed for about an hour, and as much as I have a laundry list of things I need to accomplish—including my never ending pile of laundry because I’ve taken to just wearing everything I own instead of doing laundry periodically—I’m just sitting on the floor outside his room, head tipped back against the door, and taking a few deep breaths.
Tears race down my face. My muscles are heavy, tight, and my heart hasn’t slowed to a regular rhythm.
I need to wash his bedding, both from his bedroom, and from the car. When I pick him up from school, he has a cocoon of bedding in the back seat to help him decompress from his day. Sleeping bags and quilts. My whole life has become sleeping bags and quilts.
I need to make something with the strawberries and raspberries in the fridge. Maybe I’ll just dump them into liquor or something. I’ve come to learn over the past couple of weeks that fruit does not work for Thor’s autistic little champion.
While one strawberry might smell like another strawberry, they don’t look the same, and they certainly don’t taste the same. I’ve never been more aware of the variety of taste and textures between pieces of fruit in a bunch or tub before.
I need to pick up more shower gel and hand soap and find somewhere to donate all of Matthew’s cast-offs. It has taken fourteen different bottles of both to find one that he is okay using. Again, I had never before paid attention to the texture of toiletries. Some are oilier, slippier, verses gloopier and thicker.
I need to gas up my car from driving around in the middle of the night three of the last five nights that I’ve been working. Sometimes he just won’t sleep. He’ll be wide awake and restless, others he’ll ask if we can go out in the car. If it keeps him calm, I don’t mind.
I also need to read every book in the world ever written. Matthew has an incessant need for knowledge. It’s like he needs to know how to navigate out of every possible situation he could face so he can cope with it. And while I’m a pretty smart woman, my knowledge is limited in many areas.
“Hey,” Thor’s soft voice rumbles around the space. The lighting is low, but his head peeks around the top of the staircase, his intense eyes homing in on me in the dimness.
“Hey.” Sniffing, I wipe my face. There’s no use trying to hide it. I don’t know how long he’s been there, listening to me breakdown while I run over my to-do list in my mind, but I at least know he’s heard my snotty hot mess self sobbing. What started as a couple stray tears trickling down my face, turned into gut-wrenching, body shaking sobs, on the floor outside his son’s bedroom.
“Need a hug?” He doesn’t stand up, in fact, he just sits on the top step of the stairs, and beckons to me.
