January 24, 2009

News from Wisconsin

How is Hart doing? I am asked that often, but I don't really know how to respond. How is he doing? Well enough to return home? Well enough to take advantage of his current placement? Well enough to make some much-needed academic improvement? Then there are follow-up questions. Is this the best place for him? How does Jeff feel? How are they together now? The answers are all so complicated. No one making polite conversation wants to hear the whole tale.

The truth is that Hart isn't doing particularly well. The same behaviors that were impediments to him here are difficulties for him there. He is still socially inappropriate, easily frustrated and highly anxious. His skills are dismal.

The familiar cycle of everything-is-ok-but-wait-for-the-other-shoe-to-drop is still the order of the day. Hart had two excellent weeks following his home visit here over Christmas. So he announced to everyone that he planned to go home. This greatly alarmed his dad and puzzled the staff. Where did he get this idea? It's unmistakably Hart: he finally got to Level 4 with its additional privileges, so now he was done and ready to return home. I gave him the usual speech that goes, "This is your school now. You must stay there for the duration of high school." It hardly mattered: a day later he got angry about something else and kicked a hole in his bedroom wall. Back to Level 1.

I know Hart very well: not one attempt at remediation has affected any change at all. Not years of psychotherapy, years of specialized education, many different special education settings, behavior charting, rewards and reinforcements, "empathic responses," as opposed to penalties, many different medication regimes. Nothing. This summer, I lay awake reviewing our history: when I had the choice of two private therapeutic schools, should I have chosen the other one? Had we started therapy for attachment disorder too late? I endlessly second-guess myself.

Is Hart better off at a residential school? is probably the real question. To this I can say, unequivocally, YES. I can hardly expect low-wage house staff to devote themselves as doggedly to Hart as I did, but then there are many more of them, and I had simply run out of steam for the job. I know he cannot be "fixed." Perhaps "maintained" and "controlled" are the best I can hope for.

Here is probably the most interesting outcome. Although Hart and Jeff are identical twins, with very similar impairments and disabilities, I have now seen the one extraordinary trait that has enabled Jeff to make a greater success. Jeff is able to "customize" his environment to his best advantage. For example, he is no doubt one of the lower-functioning students at Cove School, but is able to make Cove's program work for himself. He is not a stellar student, of course, but he is making slow and steady progress, both academically and behaviorally. Last summer, he was accepted conditionally to an overnight camp program for special needs kids. It was a reluctant trial on the part of the camp administrators, but I promised to trek up and collect him, if needed. I hoped and believed that he could handle himself and in fact, he did. He was invited to return this summer.

I can't account for this significant difference in the two boys, nor can I change it or adjust it. For the moment, this is the best situation for our family. I have stopped second-guessing myself.

1 comment:

Anonymous said...

Hi, I have read your blog off-and on for quite some time. I have not, however, commented before.

Tonight, though, I felt like I wanted to tell you how much respect I have for you. You are quite honest about what it means to have children who are difficult in the best of circumstances. I appreciate that honesty, and I think people who find themselves in similar situations feel less alone because of your blog and writings.

Not that you asked...but I really think you are doing the very best for both of your boys. Who knows why there is that critical difference between them? What matters most is that you recognize it, accept it, and work with it.

The best of luck to you, and thank you for your honesty. The words you write here, on your blog, are rattleing around, perhaps unspoken, by many parents!