Retarded Isn't Stupid, Mom, by Sandra Z. Kaufmann

Raising children with special needs can be full of challenges.  Every parent has the task of providing children with a safe, nurturing environment at home, school, and in the community, but the task can be much more daunting if the child has physical or mental disabilities.  Likewise, every parent struggles with letting go of the strings and control as children approach adulthood.  Parents of children with special needs have to struggle with how many strings to let go, how soon, and then worry over and question every decision.

In Retarded Isn't Stupid, Mom, Sandra Kaufmann tells her story.  When she is told that her daughter, Nicole, has mental retardation, her world is permanently and inextricably changed.  In her sometimes brutally honest and consistently insightful narrative, Sandra tells stories of the good times, struggles, and failures of her family's life together with Nicole from early childhood to early adulthood.  Besides her experiences as a mom, Sandra returns to college to complete her degree and ends up as a researcher in a UCLA ethnographic research group studying the lives of individuals with intellectual disabilities.  So her researcher's eye adds to what might have been a typical parental narrative.

Sandra's stories will make you laugh and cry.  Much of the focus of the book involves her helping Nicole work toward independence.  Nicole, who repeatedly shows her resourcefulness and independent-mindedness in spite of her intellectual shortcomings, announces to her parents that she wants to move out.  Against all logic and reason, they agree to help her get set up in an apartment.  Shortly, her boyfriend moves in, leading to constant worry about pregnancy.  Together, Nicole and her boyfriend--whom she would eventually marry--go through the typical trials of a newly independent couple trying to make it with their low-paying jobs.  Facing the usual struggles, not to mention prejudice, mistreatment, and bad luck, with aplomb and determination, Nicole makes her way with some success.

One thing I hadn't thought much about before is friendships among adults with intellectual disabilities, and friendship between disabled adults and typical adults.  The ideal would be for such friendships to get past the point of one helping the other, or serving the other, to both serving, loving, and learning from the other.  Nicole sees the distinction here.  At one point, in a conversation with Sandra about a trip to Universal Studios, Nicole said she'd like to go back with her sister, Jill, and Jill's boyfriend, "If they wouldn't be offended by us."  After that conversation, Sandra wonders, "What would it be like to know that all the 'normal' people in the world, even brothers and sisters, merely tolerated you?  To know that they would never permit the close sharing of reciprocated friendship?"

Sandra acknowledges that she and her husband do help Nicole in many ways; without their help, her struggles would be immeasurably greater.  Even with the support that disabled individuals can access from community programs, as well as from government assistance, just getting by can be a huge challenge.  For Nicole, many "angels" in her life helped her out with assistance on the job, at home, and around town.  I was challenged to think about how I can be an "angel" to people with disabilities in my life.

Sandra bares all as she struggles with letting go of control in Nicole's life.  Managing her own money, maintaining her own apartment, even opening up to the possibility of pregnancy, Sandra finally lets go and lets Nicole learn on her own, growing from her many mistakes.  The Kaufman family's experiences are instructive for any parent, but parents of disabled children especially can relate to and learn from the hard choices they have to make.