Wednesday, April 2, 2008

Why Can't I?

"Why can't I?" The world's most difficult question came at me with little time to come up with an appropriate answer; one that wouldn't hurt.

Wolf had just been told that the Jr. High Youth Group headed off to a retreat this weekend would not include him. When he first brought home the permission form the day before our trip South, I did not have an opportunity to talk with the leader about who was sponsoring the weekend, how many adults would be attending, who would be available to help "shepherd" Wolf to his various activities. Then we left for vacation, the leader left for vacation, and only on Monday did I stop and think that I had not heard from anybody about the trip and Wolf's level of skill for it.

Children with Asperger Syndrome, particularly those with impulse control issues, find large group activities to be a breeding ground for getting into trouble, intentional or not. New kids, a different routine, and no parents/adults to enforce hard and fast rules of critical structure can make a weekend intended for fun turn out to be stressful for everybody.

Yukon and I agonized over whether to allow Wolf to go. On one hand, he has made some great strides with his peers at Youth Group, with most kids coming to the understanding that he is just the way he is, and tolerating patiently, if not helping him. On the other hand, many other kids will be at the retreat, none of whom Wolf knows, and while the youth from our church will be making friends and playing the social structure game of subtlety, Wolf would be lost and confused and potentially open to acting in a less than appropriate way, thus setting him up, in a sense, to fail. The Youth Leader felt that he could not be solely responsible for Wolf and his needs, and thus made the decision he should not attend, and we supported him, knowing in our hearts how unfair it would really be to expect one man to manage what we do together, plus the rest of the kids.

But I could not explain this to a child who feels nothing but shunned and betrayed by the very people who are supposed to be supporting and nurturing him; his church family. I could see the hurt in his eyes as he ran out to the car from church; the whole way home he kept his eyes on the road as if looking straight ahead would keep the tears from appearing. Jaw clenched, he muttered "I never want to see them again."

I feel as if we all have failed him. And I am angry at God for giving this child a burden he should not be made to carry.

1 comment:

dorothy said...

Tough call, but I suspect it's better to set him up for success than to set him up for failure in these situations. Sympathy here, and the heart breaking mommy thing that comes with our labeled children when they realize that they really are not 'the same' as everyone else and that special rules apply to their lives.

I have had the opportunity to meet some adult men with Asperger's lately and I have been so impressed with how they grow up, mature (always have problems with the social/interrelation things) and have good lives contributing hugely to our community with their gifts.

Out of that I have tried to focus on accepting that my desire for things to be different in my children's lives doesnt change things and that God's plans for them don't necessarily line up with the American Dream.

The big hurdle lately has been "what if this child never learns to read- what does that life look like and how do we maximize what he can do?" It set me back a bit thinking how I can best prepare and equip this child for life in the larger world.

Hugs to you all - we like Wolf a lot and don't care if he has Asperger's - it's just part of who he is!