I've just finished two memoirs by Jane Bernstein about her daughter, Rachel.
Loving Rachel chronicles the first years of her life, when the family discovers that Rachel was born blind. Rachel suffers from seizures and the prognosis is poor. She could be developmentally disabled as well. It is the most honest book I've ever read about raising a child with any disability. And yet, there is hope and joy mixed with the sorrow of having a child who will not do the same things as other children. I cannot imagine the will it took for Jane to write this book while facing crisis after crisis.
A child with disabilities grows up into an adult with disabilities. Rachel in the World spans her childhood, adolescence and emerging adulthood. Like any 21-year-old, Rachel yearns to be independent of her mother and her numerous rules. I didn't realize how few options there are for adults with disabilities. This book was nowhere near as charming as the first memoir when Rachel was a cute baby and toddler. This book made me face harsh realities. I cannot even imagine the worry of entrusting your adult disabled child to the world. What will happen to them? Can society be trusted to give them the dignity and respect they deserve? The love and care and companionship they crave? Or will they be cast into isolation?
I do believe that as a society we are obligated to take care of those who cannot care for themselves. In many countries, disabled children are often left alone to figure out the world for themselves or worse, left to die. It is heartening to know that in the US, there are social programs to help integrate these children into regular schools, that there are programs for adults as well. But like anything, money is short and the needy many.
If you are interested in parenting a disabled child, I highly recommend these books.