Our Lives: Hard choices for parents of kids with autism

CorrespondentOctober 19, 2013 

Diane E. Morris.

JULI LEONARD — jleonard@newsobserver.com

When our sons were diagnosed with autism, I was certain that if we could just get their language development going, everything would be fine. If they could explain to me what was happening inside their heads, and I could explain to them the often-confusing workings of the world, then we could figure things out together. Communication would be, as it so often is, the key to it all.

It didn’t happen. That process in the brain that allows a 2-year old to understand and assimilate language effortlessly never kicked in for our boys. So at 12 and 14, their language is rudimentary. They use words to tell us their wants and needs and to make the occasional observation. Of course, they express much more through their actions and facial expressions, but there is no question that much of the world is inaccessible to them, and much of who they are is inaccessible to me, because of this language barrier.

I’ve often envied friends whose children with autism have better-developed communication skills. I would listen to their children talk and think how much easier they had it.

Then last year, I launched an effort to start a charter school for middle- and high-school students with intellectual and developmental disabilities. Since then, I have talked to many parents of children with such diagnoses who have communication skills far beyond those of my boys.

What I’ve learned from them is, yes, the grass may be greener on the other side of that language barrier but lawn care comes with a whole new set of complications.

My sons have occasional troubles with anxiety and behavior issues, but they are in good spirits most of the time. My husband and I expend lots of time and energy trying to figure out how to help the boys grow and develop and how we can give them the best shot at purposeful and fulfilling adult lives – thus, the school. But those are our worries, not theirs. They are just silly, happy boys, living on their own terms. They are unconcerned about anyone else’s opinions or expectations.

That is not the case for the children of many parents I talk to.

Some suffer debilitating anxiety over dangers real and imaginary. Many have difficulty with sensory processing, making it almost impossible for them to focus on a teacher’s lesson in a classroom of 25 or 30 other students because they can’t tune out the noises and sights around them.

And because their challenges are invisible to most people, they are often harassed and picked on by adults, sometimes including their teachers, and their peers. Unlike my boys, they are painfully aware when someone looks at them funny or says something mean.

The parents of these kids are interested in Dynamic Community Charter School for various reasons. A lot of them tell me that their children can’t successfully learn in a regular education classroom, but they wouldn’t be challenged intellectually in a special education class. Others recognize that all of the academic learning in the world won’t enable their children to hold down a job and live on their own, and they see the school’s focus on skills like problem solving, planning and flexible thinking as a way to prepare their kids for independent lives as adults.

Still others just want their children to go to a school where they don’t feel like the “different” ones in a room full of “normal” kids.

Yet, all these parents struggle with whether sending their children to a “special” school is the right choice. I appreciate their dilemma. The disability community has worked for decades to secure inclusion for students, and parents today are told from the moment their children receive a diagnosis that inclusion is fundamentally important. And it is. But for some children, it just makes sense to put them in a setting that enables them to focus on their academics and cognitive development without the difficulties and distractions of an inclusive setting.

For my boys, the need for a different kind of education than that offered in traditional public schools is clear. For others, it’s a more complicated decision.

So yes, I would love to be able to have a conversation with my sons, to be able to understand what’s going on in those brains of theirs. That would be better for them and for me. But easier? As I see parents struggle, the answer is clearly no.


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