|Together time! |
Leo has three feet; I'm doing my best Jabba impersonation.
I also spent much of the day in tears. With great, big, body-wracking sobs and conspicuous eyeglasses wearing while running errands. Leo is not in a good space right now, not at all. It's soul-destroying to see Leo flail and fail and not be able to help him. It's just not fair to our sweet, wonderful boy that his communication impairments prevent him from being able to tell us what's wrong, what he needs, how he feels, or how we can best support him.
Right now the biggest concern is self-care. The kind that involves elimination. I sent him to camp with two extra changes of clothing and a request that his aide watch him closely for the subtle signs that I've noticed precede his current accident pattern -- and picked up a boy who despite his aide's best efforts needed his laundry done three times and ended up in fucking diapers. Leo didn't seem to mind, and I don't care in general about having a ten-year-old kid in pullups as some of Leo's best friends still use them; that's just reality. I do care, mightily, about what wearing diapers means for my son at this point -- it means lost skills. It means Leo's five years of hard work have seemingly evaporated. It means staying home, missing activities, and missing outings. It means an irritating mom hovering all day long every day. It is a huge regression.
I thought perhaps the frequency of the accidents was a reaction to being at camp. But, no. Despite careful monitoring and frequent prompted pit stops, Leo had several incidents at home today plus one in the car while we were running errands which is something he has not done, literally, for years. The car incident is what turned me into a human waterfall of fear and worry -- because what if the problem's not behavioral? What if it's something else?
What happened at camp was an extreme version of what we've been seeing at home and at school for the past few weeks. Seymour and I were fairly certain the messy new regime was behavioral, and have been working very hard to support Leo on that front (oh the cheering and reinforcements for successful sessions!). But his OT at school is worried that Leo's experiencing actual incontinence. Which would have to mean sickness of some sort. Which means more guessing, as Leo can't really tell us his symptoms other than "tummy hurts, want a wipe." Which means more flailing, this time in a medical and diagnostic setting. I'll do it, if Leo needs it, but he's going to hate any kind of medical probing.
His behavioral tics are also completely over the top. They were getting bad before he went to camp -- but now Leo is near-incapacitated by them. He can't stop shifting from foot-to-foot or needing to spin or touch counters or walls or (aiigh) people -- it interferes with his ability to enter a car and get in his chair, or take a seat in a restaurant, or use the toilet, or not piss off unsuspecting bystanders.
I am hoping that all of this -- the erratic elimination, the tics and repetitive behaviors -- are a side effect of Zoloft. We put Leo on the drug about two months ago, on his behavioral psychiatrist's advice, to see if it could (irony) help with the escalating tics and repetitive behaviors. When a low Zoloft dose didn't work, we gradually upped it -- which made the tics proportionately worse. And it might be a coincidence, but that's when the self-care issues got so much worse, too. So, on his psychiatrist's advice, we're gradually weaning Leo off the Zoloft -- but so far have only seen more deterioration.
Meds are the final get-me-a-punching-bag unfairness dose -- even our incredibly experienced behavioral psychiatrist. Dr. R, can only make educated guesses about what might help our son. Dr. R was right about a very low dose of Risperdal helping to control Leo's violence, but before we tried Risperdal we tried Abilify for the same purpose -- and it made Leo's violent tendencies much, much worse. My son's needs are pronounced, incredibly obvious, and far from unique -- yet for now their treatment is a mystery to the psychiatric and pharmaceutical industry.
So when Leo has bad days, and there's nothing I can do except reassure him that I'm here and I'm with him, I spend a lot of time crying. Mostly in the front seat of the car, and as silently as possible so that Leo doesn't have the additional stress of worrying about me being upset -- he's sensitive to his family members' unsubtle emotions.
I hate this. I hate being unable to help my son when he's so obviously in need. I'm swinging my parenting bat as hard as I can, but I might as well be blindfolded -- plus it feels like no one can tell me where the ball is. All I know is that, no matter what, I'm on Leo's team. And I need to remind myself that this game usually has seasons. This one can't end soon enough -- Leo deserves to resume his winning streak.