A Mother Knows Best: Living with Autism

I think most parents would agree that the best way to reach a child,autistic or not, is finding just the right mixture of heart andbrain.
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Unlike the Winkelmans, the Ohio family that will appear soon before
the Supreme Court, I have not yet had to sue my school system over my
severely autistic son's education. The Winkelman case is an
interesting twist on guilty until proven innocent - or, incompetent
until proven able -- and the family will have to prove to the Court
that they are capable of legally representing their son.

I am an autism parent, so I already know the answer to this question,
even though I have not had cause to fight my district for services. I
live in a town which has been willing, over the years, to send my son
to different private school programs specializing in autism. I was
lucky but I did not feel lucky. For years I struggled with Nat's
reluctance to speak, his aggressive behavior, and my inability to
understand and connect with my son. We have frequently turned to
teachers and therapists for answers. Nat's school follows a behavioral
model, which uses positive reinforcement and also redirection of
energy and attention as a way of encouraging appropriate
behavior. This approach ultimately helped him get his behaviors under
control.

But the day when everything changed had nothing to do with pedagogical
theory or professional training. Nat was thirteen, and along with
occasional flare-ups of pinching and hitting, he had developed a
particularly grating behavior: loud, fake laughing. I grew to hate the
sound of my son's giggles, and was particularly annoyed by the irony
of his middle name: Isaac, which in Hebrew means, "He will laugh."

Nat's teachers urged me to redirect his inappropriate laughter by
having him file cards alphabetically every time he did it as a way of
channeling his laughing behavior into something quiet and fairly
productive. Although the card filing worked - it seemed to stop Nat's
laughter cold while he shuffled his cards into order - it made me
sad. I realized that what I really wanted was to be able to teach Nat
about things that are funny and good, and things that are not; I
didn't want simply to block him. But how do you teach something as
complex as good laughter, bad laughter?

One evening I was particularly exhausted when the laughing started. I
sank into the couch next to Nat and I did not bother reaching for the
filing cards. I felt worn down by his efforts to bug me and all I
could feel were tired tears forming, and a heavy vulnerability. I
looked over at Nat and studied his wide grin, sparkling with silver
braces. My heart softened a little, as it does whenever I take a
moment and let myself really look at my children's faces. I said,
"What is it, Natty? What is so funny?" I poked him and he flinched,
but he was smiling.

I started tickling him, giving myself over to our giddy play. He
wiggled around and laughed, but now we were both laughing. After a few
moments, he stopped laughing and he just looked at me, then away. He
was calm.

There are so few moments in parenting when you really know
something. But just then, I knew, irrevocably, that Nat had been
trying to connect with me with that ridiculous laughing, and that he
needed me just as much as I needed him. It changed me forever, how I
felt about Nat, and how I dealt with him. It changed us both.

With autism in my life, I have learned to be an expert on my son. Most
parents are experts on their kids, but autism parents have to learn
how to recognize and analyze some pretty intense problems, and respond
competently. After so many years of living with autism, I can say that
I have had some pretty rigorous training in problem-solving, by
experts and school professionals. However, some of my best responses
have come strictly from the heart, simply because as his mother, I
yearn for things to be good between us.

I think most parents would agree that the best way to reach a child,
autistic or not, is finding just the right mixture of heart and
brain. We need the professionals, but we also need to trust our
gut. Because of what I know about autism parenting, I would be willing
to bet money that if the Winkelmans have come this far, all the way to
the Supreme Court, and with autism in their lives, they are more than
adequately capable of representing their son without a legal
expert. In fact, I'd be willing to bet a whole pile of very valuable
filing cards.

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