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Article of Interest - Disability

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Bridges4Kids LogoWho's To Know?
by Dan Coulter, Coulter Video, February 8, 2005
For more articles like this visit http://www.bridges4kids.org

 

Your son or daughter has a disability that's not necessarily obvious to others. Who do you tell? Who do they tell?

This can be a tough decision.

There are definitely two sides to disclosure issues. Personally, I'm in favor of being as open as possible with people who are going to have routine contact with your child - and that includes other kids. But it's an individual and family decision.

My son, who has Asperger Syndrome, has gone through different phases. For much of his life, he's just wanted to fit in. And fitting in did not include telling other kids he had a condition with a weird-sounding name that affected his mental processes.

If your child's physical appearance or behaviors don't isolate him from other kids, this may not be a big issue. However, if the way your child looks, moves or acts drives a wedge between him and other kids, he has a dilemma. Does he keep silent about his condition and just deal with the teasing, harassment and isolation? Or does he tell the other kids about the
cause and possibly make himself an even bigger target?

In many cases, the other kids already know something is different. They just may not know the reason. So not telling them the reason probably won't help your child accomplish his goal of fitting in or making friends or getting dates. But concerns about becoming a bigger target are real.

Kids can be unbelievably cruel. I recently interviewed a number of teen-agers who have Asperger Syndrome about their school experiences for a "peer awareness" video. It's amazing how some kids can have such a positive attitude when you get a glimpse of the daily assaults on their self-esteem. Getting called a "gimp" or "retard" or being ignored can feel like a kick in the stomach. And some kids endure such treatment every school day.

You can't necessarily expect to change people who have their own problems and are intentionally cruel. But it's my experience that helping a group of kids understand a challenge or disability can improve your child's interactions with those who are not just plain mean-spirited. And if you can get the majority in the classroom to understand enough to avoid making
thoughtless comments, and a few to actually reach out and be friendly with or to stick up for your child, you may dramatically improve his or her school experience.

The disclosure decision is up to you and your child. You have to choose what's best for your situation. If you decide to disclose a condition or disability to a class, it helps to do some planning and preparation. It's important to involve the school and your child's teachers. Some parents choose to go to the class and make a presentation. Should your child be in
the room for this presentation? I think that sends a good message, but you need to see how your child feels about it. Some will want to be there and some won't. Some kids even may choose to make the presentation themselves. Or, if standing in front of groups is not a strong point for you or your child, you may want to have a teacher, counselor or outside professional talk with the class. Just make sure that the presenter understands your child's condition or disability and knows how it affects your child.

Most of all, I think it's important to give the whole picture and focus on the positive. You're not trying to get others to feel sorry for your child. You're trying to get them to see your child as a person, with one of those differences we all have. If you choose to explain some of your child's physical characteristics, challenges or behaviors that the class is likely to see, be sure to focus also on his interests and strengths. The friendships my son has made have been largely based on interests he shared with others.

There's an interesting book by Norm Ledgin called "Asperger's and Self Esteem: Insight and Hope Through Famous Role Models." In this book, Ledgin identifies 12 historical figures and celebrities and cites evidence of traits they had that scientists now identify with Asperger Syndrome. Some of the people profiled include Orson Welles, Carl Sagan, Sir Isaac Newton,
Albert Einstein, Wolfgang Amadeus Mozart and folk musician John Hartford.

It's important to note that these connections with Asperger Syndrome are based on analysis and speculation and not everyone accepts this theory. Ledgin notes that "because these figures are all dead, we can never know whether all would have met the classic definition of Asperger Syndrome." It's also important not to set up expectations that everyone with AS should
exhibit some form of genius. But, to me, the real power in the book is not that these people absolutely did or didn't have AS. It's that these people exhibited "different" behaviors and many succeeded in spite of some real challenges with social interactions.

I think you could consider a talk to a class about a condition or disability particularly successful if you help a group of kids be more open to accepting others with a range of differences - not just the one that affects your child.

My son is now in college and he's much more comfortable letting people know he has AS. Not that he feels it's necessary to tell everyone he meets. But he's learned that when he wants to tell someone, if he's open about it and doesn't act like it's anything to hide, people are more accepting. Confidence can be a powerful tool.

My son has spent a lot of time working on understanding and using the social skills that many people take for granted. Many kids with physical challenges spend a lot of time trying to overcome them, or at least manage them. But that's really only half the equation. We really need to educate people so that different appearances, actions and behaviors don't become gates that lock others away from the positive things individuals have to offer.

Who's to know?

It's a personal choice, but if you have a disability or condition that makes you appear "different," letting the people you routinely deal with (teachers, classmates, supervisors, co-workers, etc.) know about it and how it affects you can help them understand you, support you and appreciate you. And you may be making the way easier for the next person they meet who has a
challenge.

The whole world doesn't need to know specifically who has a disability and who doesn't. But who should we teach generally about disabilities and other challenges? Who should we show how to unlock the gates and accept some "different" behaviors to get the benefit of knowing the person inside?

Everyone.

 
ABOUT THE AUTHOR: Dan Coulter is the writer/producer of the video "INTRICATE MINDS: Understanding Classmates With Asperger Syndrome" and other AS-related videos. You can find additional articles on his website at: www.coultervideo.com.

 

Copyright 2005 Dan Coulter Used by Permission. All Rights Reserved

    

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