As a parent, having someone tell you that your child has autism,
a lifelong disorder with no conclusive cause and no cure, is a devastating
thing to hear. We grieve for the child we thought we had,
even now on occasions like walking past the Jr. Jazz basketball team,
watching the cub scouts do the flag ceremony on the 4th of July, or
seeing our grandchild express his joy over losing a tooth, we feel that
familiar twinge. Our son doesn’t do those things. He does other things
like opening the car door while traveling down the freeway, climbing
out the 2nd story window, flushing toys down the toilet on a regular
basis, breaking all the DVDs in the house, and hanging from the
two-story swimming pool slide yelling, “To infinity and beyond!”
I fear the known, and the unknown of the beast called autism.
Trying to make some sense of autism, in his book Without Reason,
Charles Hart said, “If you had no sense of natural order or cause and
effect, would you cling to routine as the only predictable factor in a
frightening and confusing world? If you had no sense of speed, would
you fail to recognize that cars travel faster than people, ignoring the
dangers of crossing a busy intersection? If you had no sense of your
own age or other people’s would you become frustrated and resentful
when people told you that you were too old for your favorite toys?”
And then, add in no speech, no self help skills, no following directions
or coming to your name just to spice things up a bit.
What do we do now? Where do we go for help? How can we
afford to pay for it? Finding resources for our son became our first
priority. My life consists of autism, autism committees, talking to
other parents affected by autism, volunteering at the school for autism,
organizing events for autism, and taking care of my son with autism,
while trying to remember the rest of the family. Along this path we
have met so many great people, families, professionals, teachers,
and individuals with autism.
The Autism Council of Utah (ACU) was rekindled from the prior
Rainman Committee, formed by dedicated professionals and parents.
The ACU is an independent Council working to foster collaboration,
communication and learning among families and agencies. Our aim
is to promote access to resources and responsible information for
individuals of all ages who have, or are affected by autism, or related
conditions. We have a great web site www.autismcouncilofutah.org
containing lots of valuable information, resources, and activities
which were compiled by another one of our dedicated parents. We
have created several subcommittees such as research, training services,
school services, adult services, events, and governmental affairs.
With the support of Governor Huntsman and the executive directors
of the state agencies, we have been able to move ahead with great
ideas. This is such an exciting thing to be a part of helping families
across the State of Utah.
With the great challenges of raising a child with autism, also
comes great blessings and joy. We can’t separate experience and take
out only the part that doesn’t hurt us. But we can use this experience
with autism, the one that we didn’t ask for, the one that we would
have done anything to avoid, to make us better through what we have
learned. Thank goodness for all the wonderful teachers, professionals
and parents who make life better for my son with autism and our
family. We continue to enjoy the journey (most of the time) and
celebrate every success. We can’t imagine life without him.
Cheryl Smith
Carson’s Mother/President Elect of the ACU
Reprinted with permission from Utah Personnel Development Center
Copyright 2007 Utah Autism Council