3 weeks ago



Sophie 183 matic in this

Sophie 183 matic in this family because Greg and Marianne had chosen Sophie out of a sense of compassion. The German poet Rainer Maria Rilke, referring to personal misfortune, wrote to a young friend, “Perhaps everything terrible is, in its deepest being, something helpless that wants nurture from us.” The same idea can be applied when an ordinary couple confronts the reality of their child’s diagnosis—the challenge is to nourish their misfortune without drowning in it, without being paralyzed by it or denying it. Sometimes the irony of their predicament, that they had chosen Sophie, was too much to bear for Greg and Marianne, but most of the time they were able to accept it without despair, without hopelessness. That acceptance allowed them to move on and to learn from Sophie that even the most vulnerable have hidden gifts. Most families go through this process of acceptance in some fashion, though each family does so in a unique way. But some families search frantically for a cause, for a cure; some become overwhelmed with what to do and end up paralyzed, never able to persevere with a treatment plan that might take months to show results. These are all examples in one form or another of denial, of not accepting the diagnosis, of being resigned to a bleak outcome, something that is avoidable for the most part. Yes, the child has autism; yes, that is a lifelong disability; but no, one does not need to be resigned to an endless wait for some miracle cure or for some cause that can easily be reversed, for someone else to rescue the child from this predicament. There are many interventions that have proven to be helpful, and many of those involve parents working with professionals to facilitate social and communicative development. Above all, acceptance of the diagnosis will call forth from parents a career as forceful advocates for their child, for they will have to advocate with service providers, with teachers, and with members of the community for more services, for better understanding, and for greater inclusion in the community. How did these parents survive this ordeal? How did they come to their acceptance? Why didn’t they give Sophie up? How could they persevere with trying to help her when the situation must have looked so bleak at times? In large part it was because they understood Sophie; they understood where she came from, what she was feeling and thinking, even though she had such limited use of words. They were able to imagine the child behind the autism, see that her preferences and her dislikes were just like those of any child, though admittedly some were a little different. But, like any child, Sophie needed structure and routine, a clear set of expectations, and she needed her parents to be flexi-

184 A MIND APART ble as well. The parameters and expectations for parenting were surely different than one encounters in families with typical children, but the process of parenting was no different. Accepting that Sophie needed to drag that branch to the library, that she needed to look at certain books, and that it did not matter what other people thought about this strange behavior allowed them to appreciate that these behaviors were no reflection on them, on their capacity as parents. Greg and Marianne learned that sometimes doing nothing was better than frantically doing something. One time Sophie screamed during the night, but they could find no cause. The more they tried to appease her by holding her, rocking her, or distracting her with toys, the worse it got. They just had to let it happen without going into a panic. Once they backed off, and left the room, the upset started to die down, and soon she settled all by herself. They also realized that they had to interpret her simple words as expressing so much more; the word “food” spoken so forcefully sometimes signified a desire for french fries, whereas at other times the same word signified ice cream. Sophie could not be expected to play like other children or communicate about her day. Challenging behavior was to be expected, and the school and other community agencies should be prepared to deal with it without framing it in moral terms. Greg and Marianne also turned to each other for support and sometimes saw what was funny in Sophie’s actions—the love of feathers and twigs, how mother and daughter must have looked walking to the library dragging a branch. They realized what would have happened to Sophie if they had left her in the orphanage. All these insights require a different perspective, an ability to imagine the future, to visualize how others perceive them. It is seeing without prejudice, without metaphors that bind. To support each other, to laugh at themselves, to consider the alternatives all require imagination, an understanding of the other person, whether that person is a spouse, one’s community, or one’s child’s future. Hope was ever present even if fragile and elusive at the end of a long lonely day. Sophie “has climbed more mountains than you will ever see,” her mother once said to an unsympathetic school teacher who, in response to challenging behavior at school, offered the opinion that Sophie was spoiled and should be taught some manners. It always surprises me that the people who criticize children with ASD most vehemently are also the ones who appear to lack empathy, are rigid, are resistant to change, and have trouble communicating effectively. There is irony in that too.

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