Monday, October 06, 2008

A Dilly of a Book

My Sister Dilly is a story of the mother of a severely handicapped child who tries to take her own life, and that of her child, and fails. After seven years in prison, she returns to her hometown and tries to become part of her child's life again. It is also the story of her older sister who feels very guilty about not being there for her when she was so overwhelmed with this child. Oh, and there are a couple of love interests in the book too. It is Christian fiction so the faith (or lack thereof) of the characters does play a part.

I loved the book. Those of you who read this blog regularly or otherwise "know" me online know that I have an autistic son. As handicaps go, his is on the mild side. I get to spend lots of time in IEP meetings. I've spent a small fortune on medication, therapists, doctor and the like. However, I've had no more sleepless nights than are normal for motherhood. I had to provide sitters for him at an age when some kids his age WERE sitters, but he can now safely stay alone, and I'll even leave him in charge of the little one for short periods of time. Despite, or perhaps I should say at least partly because of all those IEP meetings, he will eventually get a real high school diploma, and maybe more. We don't know what the future holds as far as him getting a job and supporting himself; but, like most parents, we can look forward to one day being able to leave home and not having to arrange for someone to care for him. It can be so frustrating at times when he acts so not his age, when he comes up with yet another strange behavior or causes yet another disruption, but I try to remember the days when he was in elementary school at a school that had a lot of programs for kids with severe handicaps. Whenever I got down about what he COULDN'T do, I'd see those kids in wheelchairs lined up outside the school and I'd give thanks to God for all he COULD do.

The book takes place in the months after Dilly, the mother, is released from prison, but we learn her back story. She is from a small Illinois farming community and her family consists of her sister and her parents. They belong to a church that emphasises rules over love, at least from what she and her sister can see, and her parents seem that way too. She gets married right out of high school to a a boy her parents despise. While she is pregnant with her daughter she learns her husband is cheating on her. Her daughter is born with cerebral palsy and a seizure disorder. She has to be tube fed, suctioned and diapered. She is in a wheelchair. Dilly is her sole caregiver, her husband isn't there for her or their daughter. The daugther is up several times each night and cannot be left unattended. Dilly is sleep-deprived and overwhelmed, but pride keeps her from asking for help. Finally she decides to end it all, and to take the daughter with her, because no one else would be willing to care for her.

A couple of years ago someone told me I ought to contact some department with the State, that they might have some programs my son could get into. I made the call and spoke to someone who said that we could get on the list for an evaluation and that if he qualified for services, we'd then be put on a waiting list. I questioned the person about what services would be available if he qualified, and about what was necessary to qualify. Based on what he said, I decided not to pursue it further. I went to a conference a few months ago and found out that the waiting list for those who qualified for services was over two years. Services included respite care. I can't imagine having to wait over two years to get respite care (a babysitter qualified to deal with your handicapped child) if I really needed it. We've always been able to afford whatever care we've felt was necessary for my son, but one reason that is true is that we have always been a two-income family. We were able to put him in normal daycare and school settings and didn't need to use that time to catch up on sleep. If his handicap had been so severe as to require a stay at home parent, we would have needed those state programs I dismissed as too much trouble for too little service.

Moms of severely handicapped kids have my greatest admiration.

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