11 months ago



Sophie 187 thusiasm in

Sophie 187 thusiasm in the report she sent home to Sophie’s parents. Marianne and Greg were delighted for days and made a special point of telling me. * * * If this were a fairy tale, the story should have a “happy” ending. The act of bravery, courage, and compassion should be rewarded with the emergence of a normal child who plays with the other children on the street, who goes to her local school and to fast food outlets to eat hamburgers and french fries. But no, instead she draws pictures with feathers, drags a branch along the ground, and is silent. But this is a happy ending. Sophie is no disappointment to her parents. They do not for one moment regret the fateful decision to adopt her. That one choice was made in an instant, in full knowledge of its consequences for them, if not for her. Each family of a child with autism has its own defining moment, and in point of fact there are many such moments in a family’s lifetime. Moments when a decision is made, when a realization happens, when the past with its naive hopes and dreams is let go and a future is chosen, accepted with equanimity, repose, and resolve. Sometimes that moment first occurs when a diagnosis is given, sometimes it first occurs after many years when the expected cure or recovery does not materialize. That defining moment is an acceptance of the weight of biological fate but not a surrender to its limits. Each family eventually realizes what life has in store for them and can accept that but will never give up the struggle to improve the lot of their child and to advocate for more and better services for all children. The act of rescue performed by Greg and Marianne was such a defining act, made very early on by two people in the silence of their own hearts, over the telephone thousands of miles apart. They had the courage to choose this misfortune, they took it in, nourished it, then challenged and celebrated it. In the process, they themselves were transformed. By taking small steps every day and learning Sophie’s secret language, they learned the value of seeing with new perspectives, of imagining the mind of their child, so dark and mysterious, and of seeing the gifts within the disability. Sophie gave them the courage to achieve a state of compassion, which is as close to grace as possible nowadays. Courage does indeed lie in small acts performed every day by ordinary people who find themselves in unexpected circumstances. Others might say such acts are foolish, but then foolishness is often the prerogative of the brave.

188 A MIND APART In a sense all children with autism come from an orphanage, because they are foreign to us. The choice Marianne and Greg had to make in that apartment in Bucharest, all parents have to make when they decide to accept the inevitability of the diagnosis, when they realize that their future will not be what they planned, when they give up searching for a cause, when they stop searching for the perfect cure. Each of those moments is a defining act; it takes courage and the capacity to laugh at the irony of the presumption that plans can be made, that life follows a predictable course like a river, that it has a direction and a meaning, other than the one of getting through this day to the next, of getting Sophie off to school in a good mood.

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