I've been MIA for a while. I know. It’s been really rough around here. Beyond rough. It’s been some time in the trenches, to be sure. So, here’s my stream-of-consciousness update. More to come when I can organize my thoughts better on a single topic. I just wanted to give a little bit of a “here’s what’s up!”
You’ve heard of the homework wars, yes? All parents have them. Collin considers it his personal challenge to out-homework-war all other children on the globe. He wants to win the award for most tantrums, loudest tantrums, and ultimately, defeating his parents.
One of the hallmark symptoms of Collin’s autism is a complete and total intolerance for frustration, and an inability to see a big picture. So, if he has, for example, thirty minutes of homework, he is instantly frustrated by the fact that he has any homework at all, and can’t imagine a future beyond those thirty minutes. In other words, in his mind, there is no end to his thirty minutes of homework, literally. In his autistic mind, he lives in that moment, forever.
Collin’s shortest meltdown has been 30-45 minutes long. He’s not had less than three meltdowns a day in over a month. Most days, he melts down from the minute he gets home, until about 9 or 10 p.m. Full on, complete, total meltdown. Screaming, shrieking, throwing things. Hitting. Kicking. Hysterics. It never stops.
Day in. And. Day out.
Spank him. Punish him. Teach him a lesson. Take away his toys. Take away his privileges. Give him chores. Wash his mouth out with soap. He’s a spoiled brat. My kid wouldn’t act that way, that’s for damn sure. He’d learn responsibility. He’d learn that you do your work and you play later. School’s important. No kid of mine. Meltdown is liberal bullshit lingo for a spoiled brat having a tantrum.
Trust me, I’ve had enough of that lecture in my own head. I know it’s not true, but I’ll never stop hearing the shadows of other voices, voices of the kind of person I was raised to be. And, if there were an answer that simple, we’d have found it by now. Stickers, chore charts, rewards systems, penalty systems, removing his toys, punishments, you name it, we’ve tried it. It doesn’t work because he’s not being “bad.” He’s not acting this way because he’s spoiled, or because we’re bad parents. He’s acting this way because his brain works differently than ours and because we don’t have the right tools to help him yet.
Meanwhile, it’s exhausting.
So, we love. We hug. We’re patient. We listen. We support. We try. We discipline with love and kindness. But, it’s hard. In the last thirty days my nine-year-old has told me that he wishes I were dead, that he hates me, that he wishes I wasn’t his mother, and that he never wants to see me again. He’s said the same to Bryon. Minutes later, he crawls into our laps and begs forgiveness, as if it’s erased; and, to him, it is. To us, those words echo in our ears forever. I know he doesn’t mean them; but, they stick.
When I was young, I used to be forced to apologize to my mother for whatever horrible things I said to her. I'd have to give her a hug and apologize. I remember never, not once, meaning it, and feeling a sense of horrendous nausea well up in my stomach when I had to apologize. Collin always crawls up to our laps, and says how sick he feels and how afraid he is to lose his best friends because he accidentally hurt us. I am always struck by that contrast.
So, we’re fighting tooth and nail to get through the tangled web of Tricare to get him set up with the right therapists and the right home therapy. It’s been a battle. He had six weeks of home evaluation to get set up for therapy this summer. Then, suddenly, they announced that there weren’t enough therapists in our area to cover his care, and our evaluation was useless; so, they referred us to a new provider. The provider they referred us to sounds like they suck; they violated HIPAA privacy regarding several of their other patients while on the phone with us, which makes me uncomfortable putting my son with any of their providers. But, what if they are the only ones with providers in the area? Agggghh! The stress. The stress. The stress.
And finally, Collin needs an MRI because he’s been complaining, increasingly, of Chiari-type headaches.
Oh yeah. That.
I pretended that it wasn’t a thing, for about a year. I didn’t want to put my shit on my son, when it first started. So, when he started complaining about headaches, I ignored him completely. I assumed he was just copying me, literally, and didn’t pay any mind. But, he started complaining at specific times that coincide with Chiari symptoms, such as after he ran, or specifically, after he cried. And, his headaches were very short in duration (which is very common for a kid), but very intense.
After about six months, I finally asked the pediatrician and he referred us to a pediatric neurologist, based on my history. A two-and-a-half-hour exam revealed some symptoms that I didn’t even know Collin had, which were more alarming. For example, he gets ringing in his ears when he stands, and a headache and vision loss when he has a bowel movement. He thought these things were normal because they “always” happened.
Oh my sweet boy, I’m so sorry. I’m so, so sorry. Forgive me. If only I’d known.
So, now we wait.
We wait for Tricare to approve the MRI. We wait for the results. We wait and we see. If it’s positive for Chiari…we…I can’t even finish that sentence.
So, we agonize.
Meanwhile, life trudges on. I am having lots of nightmares about brain surgery, my insane family coming and stealing my son, and about death. My incidents of night terrors have increased, which is always fun, and I’ve been having more panic attacks, which everyone loves.
Overall though, life is improving. My pain is getting better, in general. I’ve made a pretty decent commitment to painting, making a solid effort at doing it every day, even when it’s terrible. I’ve been journaling a lot. I’ve been seeing my therapist and making it to all my doctor’s appointments on my own. I’ve been keeping up with reading library books, which sounds like a silly thing to brag about as an accomplishment, but with my memory issues, it’s quite a feather in my cap. I’m volunteering at Collin’s school, too. And, I’m still making some money freelancing, and planning to teach an online course in the fall.
I still have a lot to say and get off my chest about what’s going on with Collin, but every time I try to organize something of coherence, it’s not…quite…there yet. So, I’m sure, with time, it’ll come. ,