Sam Part I

Smilin' SamNovember 2011 — I still don’t understand what is going on with Sam. I know we’re looking at Asperger’s Syndrome. There’s never been any real question in my mind that he has the same form of high functioning autism as Caroline, even though it manifests in different ways in sister and brother. But I fear he also shows signs of my Bipolar Disorder. Things fell apart for him so fast this summer. In the space of three months, he went from being my happy little mischief to being violent and angry nearly all the time. I’ve seen some of this coming. I always worried about the biting. I always worried about the way he would hurt other children with almost no realization that he was the one causing the pain. When he realizes he has hurt someone, he invariably feels remorse. But half the time, even now, he gets so caught up in his own needs that he fails to acknowledge the needs of others.

But the sudden descent from basically happy-kid-with-a-few-behavior-issues to anguished-defiant-child-with-viperous-anger happened right around his fourth birthday. I’m told this isn’t uncommon for early onset behavior disorders.  Still, it’s getting a little better.

We found a good psychiatrist who found us a therapist. And then, after two sessions, that therapist died. (Yes, really. He died. He wasn’t an old man, either.  Here is the only name I’ll place in this post or the next one: Dr. John Mark Trent. The man was amazing, and in only two sessions, he made an enormous difference for our son. And we probably suffered less than nearly all his other patients when he got pneumonia, fell in a parking lot, then died due to a brain bleed brought on by a combination of the fall and blood thinners he was taking.)

The psychiatrist has now got us a new therapist. And possibly also a psychologist specializing in autism. And also a drug that may be finally starting to make a difference. The drug is where the majority of my hopes lie. (Though hope is not really the right word. Hope is the most dangerous emotion for me. I try hard not to hope about anything. I cannot prepare for  the worst and hope for the best. I must prepare for the worst and be relieved if it’s anything better. Because otherwise, I haven’t really prepared, and I get caught out by middle ground and think it is worse than worst.) Anyway, the medication is called Tenex, and it used to be used to treat high blood pressure. I’ll blog about Sam’s harmless heart abnormality and our two efforts to keep him strapped to an EKG machine for twenty four hours some other time. (It went better than you might expect). But I’ve started seeing flashes of my little boy under all that confused anger.

His behavior has started to become something we can evaluate on a day-to-day basis as opposed to a baffling maelstrom worthy of a kid ten years older. The biggest change, the hardest change for me, is that from now until forever, we are going to have to approach Sam’s life one day at a time. A good day today will not necessarily be an indicator of another one tomorrow, and hoping for that is unreasonable. (There’s that hope again.) Mercifully, the reverse is also true. Today’s bad day won’t necessarily be tomorrow’s bad day anymore.

I still hold my breath every day at pickup time. And I still live in fear that we’re going to have to pull him out of school until Kindergarten, which would pretty much force me to quit working. But something isn’t going wrong every single day now.  That’s progress. And it’s probably about the most I can hope for, given the circumstances.

Sam Part II,

Beauty and the Beast

Sam Part III

Sam Part IV

Fix You

About jesterqueen:
Jessie Powell is the Jester Queen. She likes to tell you about her dog, her kids, her fiction, and her blog, but not necessarily in that order.

Comments

Sam Part I — 13 Comments

  1. Pingback: Sam Part II | Jester Queen

    • Yes! That's absolutely one of our favorites. Caroline has Asperger's. She's been formally diagnosed. And I think that's where we're heading with Sam, as well. We love the term Aspergian and apply it to our children liberally!

  2. Approaching his life one day at a time will be difficult but it sounds like you have some professionals helping and that you are an advocate for your son.

    • Yes, that's very true. I have a lifelong friend whose oldest son faces similar hurdles. She's the one that convinced me I really REALLY have to do it that way, and she's absolutely right. I think I'm finding those advocates in the most wonderful and surprising places, too.

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