From Emotions to Advocacy
The Special Education Survival Guide by Pam & Pete Wright
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Before you read this article, you should be warned. If you are among those humor- challenged individuals who believe THERE IS ABSOLUTELY NOTHING FUNNY ABOUT DISABILITIES, then I urge you to stop now and go back to biting your nails down to your elbows.
I understand how you feel.
When my child was born, and we found out that he had special needs, I was seriously bummed. I know that if anyone had suggested there was anything funny about this situation I would have called them callous and unfeeling and burst into a torrent of hysterical tears.
As the years passed, I began to realize that my child actually provided me with some pretty funny moments. For example, I recall one year when I took my son to the pediatrician for his annual checkup. The nurse asked my son to pee in a cup. As I waited outside the bathroom door, my son called to me to get him another cup. I couldn't imagine that this might be necessary so I asked him why. He replied, very naturally, "Because this one is full."
As an advocate for other parents, I have also had opportunity to observe the antics of both families and school districts, and all these folks provide me with hours of amusement. Unfortunately, this amusement has not been accompanied by large amounts of money (and sometimes no money) so I don't know how long I can afford to continue laughing about this.
Anyway, if you believe that this subject matter is NOT APPROPRIATE for humorous treatment, please do not read any further. Oh, and by the way, you'd better not call me. I doubt we would hit it off.
There are 2 kinds of parents of disabled children: moms and dads. There is a very important distinction between these types and one could never be confused with the other.
As moms, we are usually seen as crazed lunatics, a characterization I consider to be grossly unfair. We are actually crazed obsessive lunatics and consider it an unpardonable offense for anyone to discuss anything with us other than those matters that concern our disabled children.
Moms of disabled children invariably find one another, primarily because no one else can tolerate us. I am always amused when people describe my son as being "perseverative." At least he lets go after a while, while I can go on and on long after anyone has demonstrated any ongoing interest in my subject matter. The friendships formed by moms serve the necessary purpose of allowing us to feed our obsession by constant discussion of our favorite topic at all sporting events or any other work related or social occasion where conversation is present. (We try to refrain while in theaters, for example).
Moms are easily identifiable because they are always engaged in one of the following activities:
Of course, these activities necessarily take Mom away from spending any actual time with her child, or other children if she has them. But she is happy because she is convinced that what she is doing is even more valuable.
Dads play an interesting role in this milieu. They do not feel the same need to spend every waking hour of their lives focusing on this child because, after all, they never thought anything was different about this child anyway. They are always telling people that they were just exactly like that as a kid.
Mom knows this to be true because she has always secretly told everyone in the universe that the child's disability had to come from his father's family.
Dad is pretty happy to let this child do as he pleases. Dad does not mind when Johnny is brushing the turtle's teeth because Johnny is GENERALIZING the skills he has learned in school, and besides, its football season. Of course, Dad is in serious trouble with Mom because he has failed to notice the trail of toothpaste plastered in every upstairs room, all of which will now be used to decorate Dad's pillow.
As parents, we all know the financial commitment we must make in order to pay for all the services our child requires and which will never be covered by insurance no matter how many times we switch companies. I am amazed, however, at the money families will throw at the many varied and sometimes esoteric therapies, some of which were developed for no other purpose except to give us something else to throw our money at. These include things like:
This last therapy involves teaching the child to communicate through really geeky music and dance. It has been around for years but is only now being rediscovered, primarily in New Jersey and California.
Poking fun at kids with disabilities is a chancy thing. But some of the things these guys do are hilarious.
I remember a recent episode involving my son when I received the dreaded CALL FROM SCHOOL. This is every parent's worst nightmare because we know it means our child has done something horribly inappropriate such as emerging from the locker room into the swim area without a bathing suit.
In this instance, the principal called to inform me that my 12-year-old son had cornered an 8-year-old girl in the coatroom.
"Oh no," I thought, "Here it comes-sexual harassment, lawsuits, humiliation (again)."
She then told me that my son got into this child's face and told her that she "must vote for Al Gore."
Though I did not want to diminish the gravity of this offense, I burst out laughing.
This is expected behavior for my son who loves the election process. Besides, I was relieved because his speech was protected by the First Amendment.
I especially like it when kids respond, in kind, to the way they are treated in school. One client, a child with somewhat limited communication skills, was coming home every day from school with notes such as:
Johnny said "shit" 5 times today and "Goddammit" to his aide 10 times.
Of course the parents think this is a hoot and encourage Johnny because they know he is ably expressing their own beliefs that this child's teachers have the combined brain activity of an eggplant.
Another child, Ben, also with very limited communication, was still able to eloquently express his feelings about his teachers and class as revealed in the following series of notes:
Actually, Ben is my hero. He loves the opera, the three wise men, Emeril ("Bam" says Ben), and country music. He also went through a Stooges period. Despite his deficits, Ben is the cultural elite of his family.
One thing we all
know is that these kids all run circles around us.
More "Lighter Side of Special Education" Articles by Aimee Gilman
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