Moriel Nachum Gartenberg, 12, is severely disabled by autism. He is at the center of his family’s psychological and spirit-ual universe; in fact, his Hebrew name means “God is my teacher.” Yet he lives on the periphery of our daily lives, like an orbiting satellite. When Mori was two years old, his disability began to make itself known, crashing down on us like a meteor through the roof. In the five years that followed, as we struggled with his loss of language and his strange, out-of-control behavior, my husband and I lurched and stumbled about in sorrow, exhaustion and anger. Exquisitely sensitive to our emotional states, our other two children, very close in age to Mori, became anxious and confused. My daughter was born just before Mori’s diagnosis and her early childhood is almost a blank to me. I was profoundly depressed for much of that time. My husband was often dark and bitter. We frantically cobbled together different caregivers, therapies, and programs to try to help our son.
In Mori’s seventh year, we learned of a couple who cared for special needs children in their home, a half-hour’s drive away. We decided, in the parlance of special needs case management, to “place our child out of the home.” So, for the past five years, Mori has been raised by another set of parents. They clothe and feed him, take him swimming and horseback riding, and advocate for his needs in an educational system that is often rigid, frustrating, and lacking in resources. Most important, of course, they love him. God willing, he will live with them until he is grown.
Mori stays with us two weekends a month, sometimes more, and for two weeks during the summer. It’s like having a beloved relative visit. Although we do not interact with Mori every day, he is never far from our consciousness. His presence in our lives has made us who we are. Deciding to give up one of my children has sharpened my parental focus in a way nothing else could. My husband is a loving, playful, attentive father to all three children. He has been deepened and softened by this experience.
My older son and my daughter (Mori is the middle child) are wise and compassionate beyond their years for having Mori in their lives. They are kind to each other and will not tolerate unkindness toward anyone. My son has published a children’s book about his brother, and my daughter looks forward to being a counselor in a summer camp for special needs children.
As the wife of a congregational rabbi in a relatively small Jewish community, I find it difficult to admit that I have given my child to be raised by someone else. Although I know with complete conviction that ours has been the very best decision for each person in the family, I also know that it is not a decision most people think they would make. Although our community is loving and supportive, I feel my decision sets me apart. I persist in being open and honest about my situation, because I want other families to feel encouraged to make the decisions that are correct for their particular family circumstances.
Some families, like ours, may not be able to withstand the supreme disruption of a severe disability. It’s better to admit it than to fall apart. We love our son very much, and he loves us, too. But in Mori’s case our love has had to show itself as a willingness to give him the special environment that is best for him. Admitting that we cannot care for him on a daily basis feels like an act of courage.email print