978-1572305441

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-