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REVOLUTIONARY COMMON SENSE LIBRARY
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How Do I Decide
What Approach to Take
With
My Child Who Has Autism?
by Dee Blose
Revolutionary Common Sense from Kathie Snow
www.disabilityisnatural.com
That’s a big question, and a very important question. Your decisions can have a life-long influence on your child’s life.
First, picture your hopes for your child’s future. Start at his death
and work backwards. I’ll share the picture for my son. On David’s
deathbed, I hope he’ll think thoughts like these:
I had a wonderful life. I’m proud of what I accomplished. I have
helped others. I felt loved by my family and friends. I was fulfilled.
During David’s adult years, I hope he’ll think thoughts like these:
I make a difference in this world. I have a meaningful job that is important to me. I have family and friends who love and support me. I am respected for my opinions and I’m responsible for my choices. I am happy with where I live.
During
David’s childhood, I hope he’ll think thoughts like these:
I love school. I love to learn. I enjoy my friends. I can communicate
with my friends, teachers, and family. I can get my point across! I have
fun! I am included and never feel separated. I feel whole. I do not feel
I am “sick” or “inferior” to
others, just because I am different. My family loves and respects me for
who I am. I am David—maybe I’m a little different, but I’m
just as beautiful and wonderfully-made as all other kids. So I have autism—you
wear glasses and have a goofy nose!
Second, think about what it will take to turn hopes into realities. What are the barriers? What will your child need to learn to achieve the pictures you’ve described?
My process went like this: David has two particular needs that may be potential
barriers: communication skills and social skills. I know that behaviors are
tied to social skills. I also know that his behaviors are considered “less
socially acceptable” when he cannot communicate with others. I know he’s
smart. I need to support his thinking skills, while simultaneously enhancing
his communication and social skills.
If David cannot communicate with everyone—not just people who know him
well—he won’t have a chance in the real world. If he cannot maintain “socially
appropriate behavior,” he will not be successful outside of our home
or other “protected” environments.
Third, what kind of environments will be needed to support the development
of your child’s needed skills? In our case, environments must be responsive
to David’s needs. Sometimes he needs simplification, such as reduction
of sensory distractions and transitions, as well as not overloading him with
too much information. Sometimes he needs to be encouraged to achieve a goal,
while simultaneously having a support to fall back on if he feels over-challenged.
Environments need to support his successes, not failures. Whatever enables
him to experience success needs to be in place.
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Most of the time, David needs to be with others, including people who
know him and those who don’t, as well as people who know how to support him,
and those who don’t. That’s the real world! He needs to learn,
in his own time and space, how to succeed in the real world. He needs to learn
to recognize when he is being overwhelmed and how to take appropriate actions.
We need to respect his communication in this so he will not fail. That is the
best method for achieving “socially appropriate behavior.” Will
it always be pretty? No. When is the best time to work on it? When he is young
and the world is the most forgiving. This is one thing we cannot save until
later, because learning “social appreciation for others” is a long
process.
David needs an environment that requires him to communicate. Does he
need supports? Yes. Visual supports, communication supports, and continuity
across all environments are critical while he’s learning to communicate effectively.
Fourth, what approaches will provide your child with the tools he needs
to be fulfilled and happy in the real world? In our case, the people
in David’s life who are responsible for “helping” him
(teachers, service providers, family members, and others) need
to support him to be successful in all that he does. Support techniques
must always be respectful of him, and his needs and wants—never
humiliating, demeaning, abusive, harmful, or hurtful. Others should
be respectful of the fact that each of us has “a bad day” now
and then. Approaches must always be humane, and must never resemble
the inhumane methods that are sometimes used on prisoners or animals.
David needs to be included in everything with other kids his age,
including school and other activities—and not stuck in a corner with adult helpers.
And he needs individually-designed supports to ensure his success. He does
not need to be singled out as “special;” that contributes to him
feeling “different.”
David also needs to be given the same opportunities as other
kids: the opportunity to “mess up” and to learn from mistakes so he knows that failure
is part of life. He needs the opportunity to be “laughed at” (just
like other kids, and within reason), so he can strengthen his backbone. David
needs the opportunity to be with others who have wants and needs, so he can
learn the world doesn’t revolve around him. He needs opportunities to
be helpful, so he can learn concern for others.
Children without disabilities learn these things through typical
life experiences in natural environments. David needs to learn these
things in the same ways. He will not learn real-life experiences
in an artificial, fake environment. We all learn by really “being there.” Any child, if isolated from
the real world, will suffer the consequences. David is no different. The key
to his success is to ensure he’s supported in the natural environments
of the real world.
Finally, the best gift you can give your child is love—and not just love
for him, the love for your family and friends. One day you will be gone. Will
you leave him a lasting legacy of family and friends who love and care about
him after you’re gone? Or will he be alone, because he depended only
on you for everything, and neither he nor anyone else has any idea how to support
his needs? Worse, will you leave bitter children who feel, “All Mom ever
cared about was my brother with autism.”?
Think about the future and consider all these things. Think
about your whole family. You may feel your other children don’t need you as much as your
child with autism does. But that’s not true. They need you just as much,
and their futures are also at stake.
Listen to your heart. Don’t embrace information
you feel uncomfortable with. Take care of all your children. And when you
die, you can say, “I gave it my best. I had a good life. I am
fulfilled.”
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Dee and Keith Blose are the parents of Amy, David, and Justin. David is a 13-year-old seventh grader whose favorite subject is science. He loves video games (especially Harry Potter), books, and shopping at thrift stores! Dee is Executive Director of Youth and Family Services in her Oklahoma community, and is also a Family Faculty Adjunct Professor and co-instructor in the web-based PT/OT Master’s program at the University of Oklahoma.
Dee originally wrote this article at the request of OU Early Intervention
personnel, to provide parents of young children with autism with information
that can promote long-term thinking. Dee added, “I have been dismayed at much
of the information distributed to parents of children with autism. I feel many
of the interventions being promoted are short-sighted, don’t consider
the entire family, and are basically inhumane to the child. My thoughts are
not meant to bash any program or intervention method, but to ask parents to
think about the future of their whole families in making long-term decisions.” Dee
can be contacted via Email at dab333@wans.net. My thanks to my friend, Dee,
for allowing me to share her article with others.
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©2003-06 Kathie Snow, www.disabilityisnatural.com. Permission is granted for non-commercial use of this article: you may print this web page and photocopy it to share with others. Click here to download the PDF handout version of the article. As a courtesy, please tell me (kathie@disabilityisnatural.com) how/when you use it. Do not violate copyright laws: request permission before reprinting or republishing in newsletters, on websites, or in other media. Clip art from Adobe In-Design.
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Our words reflect the way we think, so let's get rid of descriptors like "handicapped, physically disabled, mentally retarded, learning disabled" and other words that focus on the condition instead of the person. People First Language promotes dignity and respect for all!
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