Friday, June 12, 2015

Beyond Behavior

I am not an expert by any means, but I have had a lot of occasion to think lately about parenting an older child who was prenatally drug exposed. As we have spent more time focused exclusively on E and understanding how to nurture our relationship with him, I find that his disabilities pose mysteries that I hadn't considered before. (Though both boys were born severely premature and exposed to cocaine, for whatever reason, E shows long term signs of resulting disability, while T does not.)

I feel like you can learn a lot about traumatized kids by observing how they respond to stress and change, and we've had the occasion to see both boys react to big life events over the years. T tends to take over. He activates his natural leadership skills and uses his cognitive abilities to get his situation organized, even in the most difficult of circumstances. He is formal and reserve when he is uncertain, but even then, he can be extremely charming, even manipulative, trading on his good-looks, mature point of view, and winning ways to forge useful alliances. He likes to keep his clothes tidy, his papers in order, and his schedule predictable. Even at his worst times, he always had the coming week's schedule committed to memory, in detail. Even in his moments of greatest anger with me, he would pause to tell me that the color of my shoes clashed with my purse, or that I should remember to get dog food. He is capable of mastering many trying situations, and if he cannot get what he needs, he exercises a powerful denial to push the thing that is making him anxious far from his mind; if that fails, he uses drugs to go the extra mile, numbing himself to what he cannot control. Dysfunctional and damaging, yes, but it follows a certain rational progression.

E is quite the opposite. He responds to stress or disruption by getting severely emotionally upset, almost immediately. His changes of mood happen extremely quickly. Under duress, he quickly begins to whine, sigh, pout, and otherwise express a great deal of self-pity. He regresses to total dependency, asking others to decide and do things for him even when he is capable of doing them himself - things as simple as, say, opening a milk carton or adjusting the stereo speakers. He tends to become self-involved and pessimistic, to cling to whatever authority figure is present. If that's us, we minimize all stimulation and he gradually recovers. But if there is no authority figure at hand whom he can trust when he is upset, he can quickly spin out of control, having tantrums, running away, or--if severely taxed--becoming self-destructive. I know from my gut that what plagues him is not just the aftermath of a deeply traumatic childhood that he shared with his brother (as if that weren't enough), but the frustration and confusion that result from disabilities that he's had since birth. His wiring is off, in layperson terms.

What I mean to describe is his behavior, and some of the challenges of parenting a young adult who is disabled as a result of prenatal drug and alcohol exposure. What that leaves out is that he is very much an individual, with spiritual and emotional depth and highly original gifts. We've drawn naturally closer until we are indisputably his parents. He calls us mom and dad, and recently asked to change his name, entirely unprompted by us, because he wants to take the same last name as Tim. With great effort, he has become less actively self-destructive over the last several months. We helped him get from the department of child services to a department of mental health services program where he gets better care and has freedoms appropriate to his age, and that means we have been able to better integrate him into our daily life. He uses public transportation to go places he'd like to go, he spends time not only with us but with our friends and family. He walks the dog, he cooks meals alongside Tim, we take little trips. He is as close as he has ever been in the last ten years to having a normal life.

Recently we had such a small triumph, nobody else would have noticed or recognized it as an accomplishment at all: we had adult friends to our house for a game night, and E included himself, sitting with us for over two hours, playing board games of great complexity. He smiled, laughed, competed, and even won. He is intelligent, sensitive and capable, when he is operating within a safe environment in a very familiar setting with people he trusts. After this magical evening, I wondered at how "normal" he had seemed, and questioned (as I often do) whether I was underestimating is abilities.
It occurred to me that we were playing board games - there were rules, visible indicators of progress, and a routine governing who got to take their turn as the main actor at any given moment. The environment of the game brought us all into a small, controlled microcosm where it was easy to see what was happening and what would happen next. Under those circumstances, he was very nearly indistinguishable from someone with no impairments at all.

But the world is not such an environment. I think of what it must be like for him. I imagine that in school or even now in some of his programs, he must feel people are functioning at an intellectual level above his. He has so often been excluded, for example from conversations between social workers, judges and service providers. He has real limitations in his inability to keep up with fast-paced or unanticipated activity, and reacts with uncontrollable emotion.

It is rarely E's disabilities or cognitive limitations that get in the way in his daily life; rather, the problem tends to be people who expect or demand a level of function that he is not capable of. Over the years, I have seen him expelled from so-called therapeutic foster homes, arrested, incarcerated, put on probation, and more, for "crimes" that are a direct and obvious behavioral result of circumstances that are deeply provocative to him because of his disabilities. No wonder he is sometimes overwhelmed by despair!

He also has very severe limitations in his social interactions with peers and his ability to make and keep friends, and so he gets terribly lonely. We are not just his parents - we are his best friends. For long stretches, we are sometimes the only people who play with him, go to the movies or the mall with him, laugh, sing or dance with him. We structure our weekends with him to maximize those experiences and minimize stress and intrusion. He gets enough of that during the week, when he is navigating the network of service providers and others who are part of his web of support, or (as in the case of his probation officer) the consequence of his mistakes.

Sometimes we'll go for several weeks feeling that he is very easy to be with, easy to love, and loads of fun. Then come abrupt interruptions during which he can be much harder to be around, and at those times, his pessimism can be contagious if you aren't careful. Occasionally, though it happens less often now, we feel some measure of despair and anxiety that we aren't able to help him and don't know what is going to happen to him. I am not religious, but at those times, we turn it over to God, for wont of any other workable strategy, which is to say, we stop trying to have all the answers. And so far, right when I'm about to feel like I have no idea what I can do to help him, he snaps out of it and shows us the way.

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