Thursday, May 18, 2006

Care for the Caregivers of Autistic Kids

You don't need to read stories like this one -- the tragedy of a mother who is accused of killing her autistic toddler daughter in Illinois this week -- to be reminded that parents and other full-time caregivers of kids on the autism spectrum lead intense, stressful, emotional lives.

Now this mother was reportedly suffering from depression, a serious medical problem that should receive attention. I wouldn't want to minimize that, or speculate about any aspect of this tragedy. But reading about this story I couldn't help but think about the need for caregivers to make taking care of themselves a priority along with their kids. And taking care of themselves should go beyond parent support groups.

This mom was active in a parents support group, The Peoria Journal Star reported in the above link. Support groups are great. They can be especially valuable for moms and dads of children who are newly-diagnosed. Where do I go for services? Whom do I ask for advice? How do I tell a good service provider from a great one or a not-so-good one? What do you do when things are not going well? What kinds of things should you do to sustain progress? What are other parents' experiences of dealing with the ups and downs of their kids' development? With service providers? School systems? A parent support group can be a sustaining link to information and common sense when you feel fogged in by the unknown future an ASD diagnosis can bring and flummoxed by the full-time commitment it takes to manage services and educational programs.

But caregivers need more than this. There needs to be some pursuit outside of the autism universe to maintain a healthy outlook. It could be as simple as reading a book, taking regular walks, going out with a friend, talking to people about subjects unrelated to your autism quest. People I know play soccer, write, garden, belong to book groups, get involved in houses of worship, make special occasions to spend with their "typical" kids. These ideas appear so very suburban, so "normal" as I write them. It sounds like the people I'm describing do this all the time, every week. They don't. It's irregular. But even snippets of time away from ASD can carry ongoing significance in the long trip we're on.

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