Parents who have a child with a disability may find it hard to let go or to take calculated risks. This is especially true as their child begins to utilize their independence or start the transition to adulthood.
In her book Retarded Isn't Stupid, Mom, Sandra Kaufmann shares her family’s story of raising her daughter, Nicole. Her book covers their journey from early childhood into adult life. Sandra’s narrative skills make her words jump right off the page. You will be able to picture the image she creates with her words. She will make you laugh. And she will make you cry.
Sandra often focuses on helping her daughter Nicole work toward independence and self-determination. When Nicole wants to move out, they agree. And against all odds, their family help Nicole move into her own apartment. Before long, Nicole’s boyfriend moves in. This leads to new worries and concerns–including marriage and pregnancy.
One story provided me with new insight. Nicole tells Sandra that she and her boyfriend would like to take a trip with her sister, Jill, and Jill's boyfriend. "If they wouldn't be offended by us," Nicole adds. At that, Sandra ponders, "What would it be like to know that all the 'normal' people in the world–even brothers and sisters–merely tolerated you?”
Sandra accepts that Nicole needs support to live the life she desires. This kind of support may not always only come through community or government programs. It also comes from natural supports. One is the support she and her husband provide. Another is the “angels” who help Nicole on the job, at home, and in the community.
These stories are useful for any parent. It’s not easy to let go and take risks. But there is dignity in risk. As a parent of a child with a cognitive disability, I was able to relate to and learn from the ordeals and hard decisions this family faced. I was also able to relate to and learn from Nicole’s tenacity.
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From the moment Camila was born, I knew she would change my world. But it was not until third grade when she made the comment “I don’t want to live anymore” that I realized things were not right.