Susan's Blog

Monday, March 22, 2010

Excerpt Eight from AMSG

My book, the Autism Mom’s Survival Guide: Creating a Balanced and Happy Life While Raising a Child With Autism will be out in stores a week from today (or tomorrow).

Chapter 8: Looking Toward the Future

…Jane, a kindred spirit in Milwaukee, is way ahead of me.
Her son, Chris, is thirty-three. “My son has been working
at Barnes and Noble and living in an adult family home
in the community for eleven years,” she wrote me. “I still
suffer from separation anxiety and miss him every day
(even though I do see him every weekend). I can tell you
that I still do not know if this is the course he would have
chosen for himself. He does not verbally indicate whether
he is happy or not (he has limited speech). We judge his
well-being via his behavior.” This has always been our
modus operandi with Nat, who so often cannot or does
not express what is going on inside.

Jane impressed me with her positive attitude and her
ability to meet difficulties head-on, despite the challenges of
being a single mother. “I was divorced when Chris was six or
seven years old,” she told me. “I really felt alone. I just wanted
to take care of my son and daughter. We all moved to Akron,
Ohio, because I had a stepsister there. It was great because we
had family; we had supports.”

The support of her stepsister enabled Jane to go back to
school and earn a degree that would help her get a good job.
After she finished her education, the three of them moved
back to Milwaukee and lived with Jane’s parents while Jane
looked for a job. Jane feels she was so lucky to have been
able to do that, as opposed to feeling discouraged about
moving in with her parents. “Those were the happiest days
of Chris’s life,” Jane said. Even now, twenty-six years later, he
points in the direction of her parents’ old house when they
pass their old neighborhood. It is Jane’s dream to buy her
parents’ former home so that Chris can live in it again.

Jane’s strong sense of what is important and her ability to
stick with that has convinced her that advocacy is the key to an
autism family’s happiness: advocacy for the child and for the
parent. “I want more for him,” she said simply. “I want to build
a better world for him while he’s alive.” Doing that is a tall
order, but Jane has learned that facing the obstacles that come
up gives her such a feeling of accomplishment. “You have to
stay on top of all the tasks related to supporting Chris as an
adult in the world. It never ends. But it’s the challenge of it
all that interests me,” she said. “If you’re negative, all the work
you’ve accomplished will cave in. It is just that simple. Chris
can sense my attitude. It affects him in so many ways.” And
being negative will affect you, the parent, as well.

Jane also discovered the value of finding trustworthy
people who understand her child. One such person helped
Jane’s son Chris to get the job he has had for eleven years at
Barnes & Noble. “Chris had a job at a public library,” says
Jane. “There was a woman there who knew how to connect
with him. When this woman left the library to work at Barnes
and Nobel herself, she took Chris with her.” Since then, she
has acted as a job coach and sometimes serves as a liaison
between Chris and the customers. But it is Chris’s ability to
internalize the layout of the bookstore that has made him
the cherished employee he is today. “He knows just about
where every book is in the store,” says Jane. “He helps customers.
He walks them to where their book is.”


It's reading things like this and of course following your struggles with transitioning Nat into adulthood that keeps me constantly worrying. It's like a nagging little fly, buzzing around my brain, that never stops: worry for the future. My husband doesn't understand why I'm always thinking about how the decisions we make now will affect my son when he is an adult. He only worries about today. I just can't do that. I'm always thinking about tomorrow and what if. Every IEP, I always focus on helping him build skills for adulthood, like functional literacy and basic math skills. It can be suffocating at times, thinking about all we have to do to prepare him for adulthood. It makes me just want to curl up into a ball and hide sometimes.

— added by ASDmomNC on Tuesday, March 23, 2010 at 10:11 am

I cannot wait to see the new book! Hopefully it will hit bookstores in Canada very soon!

— added by runningforautism on Thursday, March 25, 2010 at 10:00 am

When will your book be published on e-book format? (pretty please?!) Would love to to add it to my collection. Excellent resource!

— added by Ivy on Tuesday, December 21, 2010 at 10:40 am

My first book is an e-book now; I don’t know when AMSG will be. Thanks!

— added by Susan Senator on Tuesday, December 21, 2010 at 11:24 am

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