Thursday, September 23, 2010

Love You to Pieces: Creative Writers on Raising a Child with Special Needs

Love You to Pieces: Creative Writers on Raising a Child with SpecialNeedsLove You to Pieces: Creative Writers on Raising a Child with SpecialNeeds by Suzanne Kamata

My rating: 4 of 5 stars

This is a beautiful, inspiring, and heart-achingly honest collection of writing about raising children with special needs. Many of the pieces are autobiographical, and a few are fiction. Any writing about children born as premature babies touches my heart and often makes me take big gulps of air.

Another story that stick with me was by a mom whose son had a type of muscular dystrophy that meant he would not live beyond his 20s. Having a preemie or fragile child is worrying enough, but it's a different type of that you know will never end throughout your child's life. To know that your child will not live into adulthood truly defies understanding. Instead of worrying about the future, and how your child will do in school or in social situations, whether he or she will ever have a job or get married, instead you would want to freeze time right then and there and not even think about the future, much less allow yourself to worry about it. The very honest and brave writers in these stories and poems express not only their fears, but also their annoyance and impatience with their children.

Another thing that struck me about this collection is the total inadequacy of services for people with disabilities or delays after they pass school age. The law protects children while they are in school; they must receive services. But what happens beyond that? What if they are not capable of holding down a job?

Today my husband told me about the mom of a severely developmentally delayed girl who used to go to my eldest son's school. A few years ago the special ed specialists told her that her daughter was too behind to stay in the regular classroom, even with an aide. She attended a special ed program in another elementary school (which was traumatic to the girl, who loved her original school) for a couple of years. Now the mom has decided to home school her, because she feels strongly that the special ed classroom is not helping her daughter; she needs to have opportunities to be around "normal" kids.

I also think about another mom of a very early, sick preemie who expressed her dismay that the school had deemed her daughter fit for "life skills" but didn't seem to think she needed to focus on academics. This same mom had previously been told that her daughter would never walk, talk, or eat, all of which skills she has mastered. To be told that the system has essentially given up on your child is a devastating message to hear. "Rachel, at Work" writes about the stages of acceptance a parent goes through as she comes to realize the truth of her child's limits, while not diminishing her value and her spark.

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