Monday, July 14, 2014

Not So Big

Recently we went through a rough patch with E (T's younger brother, see below). He had a few days with us during which he was a remarkably different person, totally beyond any of our abilities to manage him. It ended without disastrous consequences, but it was a close call. (At one point, we had to involve the police and file a missing person's report and spent hours looking for him before he resurfaced.) We're trying to work closely with his group home now to try to develop some strategies in common for helping him manage his behavior, and get him the ongoing services he's going to need to help him into adulthood. The problem is, he's big on the outside, and not so big on the inside.

I'm relieved that his current group home obviously understands kids like him. We couldn't parent E full-time on our own. We would be in way over our heads and unable to provide the constant supervision he requires. E is turning 18 this month, and we're trying to work with them to secure his situation there until he's 21 to give him more time. We're hoping to get a conservatorship and disability services to help support E into adulthood and minimize the risk he poses to himself. T is part of that equation, and we've talked about the importance of the three of us working together, taking time-outs from E when he is too much for us, supporting each other so that no one of us burns out, and maintaining realistic expectations about what E needs and can manage.

As we've pieced together our understanding of how to help him, I've done some reading about fetal alcohol syndrome. I'm not a professional, but by this point, I am a well-trained foster parent, so I feel qualified to say that I have some knowledge of the impact of fetal drug and alcohol exposure. (Important to note: while E has traits associated with fetal alcohol syndrome, he also has a lot of other traits that are his own unique god-given personality, that have nothing to do with FASD.) Among the consequences of FAS that I see in E: he has poor impulse control, unusual difficulty making and keeping friends, a tendency to embellish the truth, and a need for near-constant supervision in order to stay safe and calm.

In these, our first months with him on a regular basis, we've found a few things by trial and error that help him manage:

1. He does best at our house, where things are quiet, relaxed and comfortable. He likes the garden, and knowing he can go someplace and take a time out or a nap when he needs to. He needs a lot of down time.

2. We have a (very) sensitive, snuggly dog, Monte, who works wonders with E. Monte greets him with wild enthusiasm, and they spend hours snuggling. E comforts Monte when he's nervous, and it makes him feel good to be the caregiver. Consistent with what I've read about FAS, E has a lot of trouble making and keeping friends, because his social development and sense of appropriate behavior is underdeveloped. He feels a lot of pain about this. But his bond with Monte is true and steadfast and reciprocal.

3. E sucks up the energy in any situation, so it is a bad mistake to expose him to environments where there is too much excitement, of any sort. He needs LOTS of quiet, fewer people, less noise and activity than other kids.

4. We need to know when we are in the danger zone where his behavior might exceed our ability to protect him and ourselves, and have and execute, quickly and consistently, a safety plan, which involves getting him back to his group home, or, if necessary, involving the police or taking him to a hospital.

One one very helpful website, I read this: "Children with fetal alcohol syndrome are vulnerable, naive, immature, and prone to getting into trouble with their poor communication skills, lack of impulse control, underdeveloped conscience, and poor judgment." That is pretty much consistent with what we see with E.

When E crosses a line, it feels unfair to discipline him for behavior beyond his control. By the same toke, to the extent that he's able to learn, we do want to try to teach him appropriate behavior, and hold him accountable. The trick seems to be to match that to his level of emotional development.

T was such a different kid; he was always supremely rational, and rational consequences worked with him on a lot of occasions. T's issues were post-traumatic stress, substance abuse, guilt and shame, and a lot of suppressed anger about what had happened to him. He always made sense to me, even when he was driving me crazy. He responded to love, high expectations, and tough, fair discipline appropriate to his behavior, combined with lots and lots of love and occasional, deserved indulgence.

E is not that way - his brain seems to be more injured and his development much more delayed. He needs an entirely different sort of guidance and support. But beyond the difficulties I'm describing here, he is such an easy young man to love. He is guileless and artistic. He's incredibly funny, a real comic genius. He's quick to demonstrate affection, and when he's comfortable, he's naturally friendly and outgoing. His smile and his laugh light up the room. He is absolutely worth everything we can give him and more.

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