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I am often asked whether a parent should tell others about their child's special challenges.
I used to say I always tell, but I've learned to be judicious about the specifics of when, how much and to whom I address my remarks. My general advice is to tell whenever the timing is right and the situation is appropriate (NOT when a new teacher has a room full of noisy, excited children or on a short job application) because I would much rather the world see Kate through my accepting educated eyes, than their
confused, uneducated, fearful and often judgmental eyes. But, in order that the information be used to Kate's advantage I must make sure that I don't overwhelm a new teacher, or scare off a potential new friend. I let them first see Kate's strengths as I begin to tell about her differences. I tell a little at a time. (Perhaps only describing the specific characteristic and giving it a name)
A label only becomes a bad thing when it is used with a negative connotation, or used to exclude or predjudice the
child. That stuff happens with or without the label. Kate is now nearly 17, according to her, and we have always
found that being open, forthright and willing to discuss NS and autism was always the best route, no surprises then
and the world learned that everyone comes in different flavors with different skills. While Kate was sometimes sort
of "examined" at first by some teachers, the kids would take any information, then move on with life. They deal with
facts. The few times she has been "picked on" at school, church, the neighborhood was when the kids didn't "get
it". Didn't understand some of her behaviors, or why she was so much smaller. A little education and viola, less
watching, a lot more acceptance. The other bonus is that her openness allows others with issues to come out in the
open, too.
We used to go into a group and give a little education when necessary, always helped! Kate started asking me to do
it. Now she's learning to do that for herself. (This was written several years ago, Kate is now nearly 20 years old
and does most of her educating of the public. Occasionally I still need to provide a little clarification, but Kate
gives the basic facts. Openly, honestly, unashamedly. Her theory: The worst disability is a bad attitude and that
is something over which she CAN control!
I personally hope she always comes out with her diagnosis. The adults I know who are still suffering are those who
are afraid to explain their behaviors or medical needs. They remain a mystery to co-workers, employers,
neighbors. They are afraid things will get even worse if they tell. That's not been the case with us.
Obviously we don't tell everyone walking down the street. But those who will have lots of contact appreciate our
willingness to call a spade a spade and go on down the road. If we the parents are clear to the kids that NS,
AS, Down's Syndrome or other diagnoses are nothing to be ashamed of, then the kids won't be either. And the school
personel, kids, neighbors are going to pick up on your approach. If you are positive, point out the good and the
not so good parts, then move on to areas that the child is very "normal", then they will not put so much emphasis
on the differences. We all have some stuff that is a little "off" about ourselves, but don't all have a name for it.
MK<----who firmly believes that educating the world makes all the difference!
Copyright © 2000, Edited 2006 All Rights
Reserved
Martha Kate Downey
mk@mkdowney.com
www.mkdowney.com
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