I just bought a new book, "Life Planning, for Adults with Developmental Disabilities
- A Guide for Parents and Family Members".
I have been thinking of Robyn's Future for some time now and I mostly worry about what will happen to her when my husband and I are gone. As Robyn has gotten older, I realize I have gotten older as well. At this point in our lives we have been able to keep her at home and see to her every need. She is loved and looked after without hesitation or regrets.
Recently I was in a car accident and hurt my back. I realize now that I could have difficulty taking care of her as she reaches her adult years. Where I was healthy and didn't think I would have any problems seeing to her needs, I now live in pain and I think about, 'what if I can't?'
I bought this new book and I read only the first chapter. I already feel this book will have a big impact on my life. The author has experienced life with a disabled child and she has already gone through most of what I will be going through in the very near future.
Once my plans for my children were to raise them to be self supportive contributing members to society where they would take care of us in our old age. That part is a joke; I still have my sense of humor. But seriously, I want them to be independent and have families of their and come visit often. My plans have remained the same for three of my children. Only there is a slight difference, they will always have the obligation to take care of their developmentally disabled sister. This is no light task.
For Robyn, I want her to have a good quality of life. I don't want her to suffer at the hands of others who don't appreciate the kind of innocence that comes from her disability. I want her to be able to be as functionally independent as possible and have those who will truly love her and take care of her as we have done all these years.
I will continue to read Greenbaum's book and see where it takes us. I already feel a connection to her through her daughter Susie. I agree with her "Developmental disability is an equal-opportunity employer." If there was a job posting somewhere for a parent advocate of a child with a disability -- -I wouldn't have thought I was qualified for the position.