Our life with autism has been steadily heading toward a dark tunnel, and I’m afraid the train is about to arrive.
While Little Miss seemed to be coming along so well up till this year, fourth grade has made it clear that she has real issues I’ve written off to language delays or other “fixable” things. We’ve had to come to grips with the fact that despite the help she gets at school and TSS/BSC services, one of two things is true: either the language help that she needs just isn’t available in this area, or that she really is limited to practical knowledge that will enable her to care for herself, but she’ll never be an academic scholar, no matter how smart she is.
That realization, while heartbreaking, pales next to the other situation. The past few weeks have made it clear that The Captain’s world cannot be moved by anything but his own impulsive desires. He does what he wants to do when he wants to do it, despite the rules and without regard for others. Earlier in the year, these incidents were limited to school hours, and we thought the “experts” could deal with that. I mean, despite our requests not to have an aide assigned so that he could learn to take care of himself, they put one with him. Seventh grade with an aide all day long. Not geared toward making a boy gain a lot of friends. But, again, we thought as long as the incidents remained at school and he continued to follow the rules at home, we could go on.
This week, however, in a remarkable display of just where his head stands, we’ve discovered that he is near sociopathic. He acts without regard for consequences and how his actions will hurt others. As we peel back the layers of “what if,” we can envision some truly horrifying results, especially with an impaired sibling who’s coming into her own puberty issues.
When his mobile therapist came this week, we had a long talk. She reminded us at length that this is part of the Asperger’s diagnosis, while she reassured us that we’ve been doing all we can to help. She had a long talk with the Captain. Then she quit.
Part of mobile therapy, obviously, is the same drive that is part of helping an alcoholic: the patient has to want help and be willing to admit things aren’t as they should be, and be willing to make changes. She says after nearly seven months with her, that’s just not happening. Perhaps he can’t process and assimilate the information, or else he can’t apply it. She believes, as we do, that he chooses not to. This after eight years of TSS and mobile therapy, sometimes at 35 hours a week.
So we’re heading into the tunnel, with a very small number of alternatives available. The therapist suggested respite, but there’s no one that will step up for that in either family, not for long enough to make a difference, anyway. Until he actually hurts someone, none of the facilities around here will be interested–we’re not sure we want to wait till that happens. Certainly, we’re open to suggestions. Got any?