When I was 11, I was very excited when a new family, with a daughter my age, moved into our neighborhood. We were short on girls in the neighborhood: Pam across the street was a year younger than me, but that was it. I looked forward to having a classmate right there, across the street and next door to Pam. Suzie was welcomed onto the block, and into my classroom.
And then I got to know the family, and Suzie, a little better. There were obstacles to having Suzie as a companion.
Obstacles such as hygiene: Suzie smelled bad, like she didn't wipe herself after using the toilet, or bathe regularly. And she wasn't interested in playing in the same ways we played. Suzie wanted to play with baby dolls and Barbies and stuffed animals. We had moved beyond that: we played Spades and hearts and Monopoly; rode our bikes (Suzie couldn't ride one) to visit girls in the new housing development a few blocks from our neighborhood, or just hung out and gossiped.
And as to doing schoolwork or working on projects together, it soon became obvious that Suzie was... slow. Adding double-digit numbers was hard for her, let alone long division. She couldn't comprehend most of the 6th grade textbooks. When the teacher was talking, she stared blankly out the window. During recess, she gravitated to the younger children on the playground.
Suzie was in school with me for only one semester; after that, her fundamentalist Christian parents decided that public school was a bad influence on her because she was "acting out", "talking back", and being "defiant" by "refusing" to do school work. To them, the obvious answer was parochial school: that would straighten Suzie out! Besides, those meddling busy-bodies at the school thought that their daughter was stupid; that she was a retard; they were college-educated, and their daughter wasn't a retard, and they would not have their daughter in retard class. And since the school insisted that Suzie belonged in retard class, well, Suzie just didn't need the public schools.
What Suzie's parents refused to admit was that the spinal meningitis Suzie had as a toddler caused brain damage, and left her with mild mental retardation. God had provided them with a miracle by sparing Suzie's life; God would not have marred that miracle by leaving her mentally retarded. Further, they believed that to acknowledge that their daughter wasn't "normal" would reflect poorly upon them, never mind what not recognizing it was doing to Suzie. No, there was nothing wrong with Suzie that more discipline wouldn't fix.
By the time Suzie was 14, she had started running away from home. At 16, she disappeared for a time — to re-emerge at 18 pregnant, homeless, and addicted. By 30 she'd had three children, all of whom had been fetally exposed to Suzie's chronic drug addiction, and removed from her custody. Since the mid 1970's, Suzie has been a member of the homeless population; when I last had news of her, she was sleeping under the Burnside Bridge in Portland.
In past editions of A Little Bit Special, the issue of whether a child may be harmed by being evaluated for and, perhaps, identified as having, a disability, has been raised. The concerns are varied: fearing the stigma of being identified as a special education student; fearing that if a child is "coddled" in special education he or she won't be able to cope in the "real world"; that disabilities are being over-diagnosed and parents are drugging (or being "forced" to drug) children into compliance with the unnatural school environment.
But as Suzie's story illustrates, the risks to a child of not receiving special education services if they are needed can be extremely grave. Here are some of the concerns I've come across.
There's nothing wrong with my child.
Denial is a tough thing to deal with. We all have dreams for what our children will be, and when our children are born with all their fingers and toes, it's easy to look at the precious bundle and be astoundingly relieved that your child is "normal".
It's easy to miss that your child is not developing in a typical manner. We had no idea that our oldest's language development was precocious (he's highly gifted in that area). Or, if your child is showing signs of atypical development, to look for a short-term problem, easily correctible. With our younger son, there were many reasons as to why his language use was lagging so far: he was a preemie; he had recurrent ear infections, so perhaps he wasn't hearing properly; he had dozens of extreme tantrums a day because he was so frustrated by his inability to communicate.
But if you are suspecting something is different about your child; or if those with more experience — teachers, grandparents, aunts or uncles or friends — are noticing something, then odds are that there is something going on, and denying it will not make it go away. Delaying getting a diagnosis and, thus, getting help for your child, makes it worse, not better. The older your child is when interventions start, the farther behind he or she has fallen.
Think of it this way: a child with an educational disability is using a stick shift where typical children have an automatic transmission. When you learn to drive an automatic, all you need to learn is how to steer, and how to brake.
It's harder to learn to drive a stick shift — not only do you need to steer and brake, you also need to learn how to start from first gear, when to shift, how to get that stubborn motherfucker to go into reverse, and remember to step on the clutch when braking. And when you've mastered those tricks, you get to add starting on a hill. All these things takes practice, and the whole process is easier, and quicker, if someone who knows how to drive a stick is there to assist you. When you first start driving a stick, starting in first gear is a near impossibility. Soon you get the knack — and eventually you juggle all those tasks so seamlessly that you don't even think about it, and if you do happen to be in a rental car, you are totally frustrated because you can't find the damned clutch.
There's nothing wrong with a manual transmission as opposed to an automatic. It's just different. And a little more difficult to master.
But, if your child jumps into his educational car not knowing it's a manual transmission, and repeatedly ends up stalled out, putting along in first gear because he doesn't know there are other gears, or burning out the clutch as he struggles on his own to learn to drive it, his or her self-confidence will suffer inestimable, and continuing, damage.
I don't want my child to be labeled; he will be teased, called names, or ostracized.
If you suspect your child has a learning disability, he is already is being labeled.
In the best of circumstances, the labels are limited to unkind words: weirdo; stupid; idiot; lazy; retard. In worse circumstances, you can add "target" and "victim". And most tragically, your child will internalize, and label himself this way.
One of my regrets with our son with autism is that I didn't explain to him earlier what his diagnosis is, because when a bully on the bus called him "loser", he thought that defined him. He thought he was a "monster" because he found it so hard to deal with his frustrations without melting down into a full-bore tantrum.
Now he can replace a bully's taunts with the reply "no, I have autism. That doesn't make me a loser". And he knows that he is not a "freak" or a "monster", because when there is a name for the way you are different, it means that lots of other people are similarly different. Yes, he'll say that he "hates this autism". But that's so much better than having him hate himself — because he knows that his autism is something he, and we, can deal with together.
So, who do you want labeling your child: trained professionals who have your child's welfare at heart? Or schoolyard bullies who are intent on victimizing your child?
My child doesn't want to be singled out as "different"
When my eldest son was 6 years old, we finally figured out that he couldn't see well. He's extremely far-sighted — to a degree that standard school vision screening tests had totally missed his vision problem. When we took him in to get his glasses, we also discovered that he had amblyopia.
So there he was — 6 years old, the only kid in his class with glasses — and very thick glasses, to boot — with a patch over one eye.
He hated it. He did everything he could to destroy his glasses, and to avoid wearing the patch. He was called four-eyes and bug-eyes and three-eyes and blind pirate .I did what I could to make it more tolerable; I cobbled together a soft, green-velvet patch that fit on his glasses frame to make it more comfortable. But the glasses and the patch were not optional. He was at risk of losing the vision in one eye.
By the time he was 7 he was done with the patch, a couple of other kids had glasses. By middle school lots of kids wore them — although none of a prescription such as his, which was an object of curiosity. One day in the locker room, another kid grabbed the glasses to "try them on" and accidentally broke them The kid felt horrible about it because, by putting the glasses on, he realized just how vital they were to my son.
That your child doesn't like being identified as "different" shouldn't stop you from acknowledging that he is. Our children don't like a lot of things that are for their benefit. They — like you — will adjust to the reality of the challenges with which they have been presented. And the more matter of fact everyone is about it, the better off everyone is, and the more quickly everyone will adjust.
Too many kids are being diagnosed with learning disabilities. The diagnoses are being used as an excuse for poor parenting, laziness, misbehavior, or to drug children into compliance.
Well jeez, yeah — there are the anecdotal stories (does anyone know of an actual study showing this?) of upper-class parents searching for doctors who will hang a disability label on their child, so the child will be given accommodations which allow them to achieve better grades and an "advantage".
And there are anecdotal stories of schools "pushing" stimulant therapy onto rowdy kids to more easily control their boisterous classroom behavior.
And there are anecdotal stories of a disability diagnosis being used, either by the child or the parent, as an umbrella excuse for every failing.
Well guess what? That shouldn't mean jack shit when it comes to an honest evaluation of what problems your child is having.
You should not be considering with what other people may do with a disability diagnosis. You should be looking out for the best interest of your child. Yes, if your child is being evaluated for ADHD, make sure that all other possibilities have been considered. Our elder son went through evaluation three times before we were satisfied that the diagnosis was accurate. There were other things going on: he had poor vision that had not been addressed, and he was highly gifted and bored in class. However, once those situations had been taken into consideration, it was obvious that he was still (in his grandmother's immortal words) a fart in a windstorm, flitting from thought to thought and unable to attend to what was in front of him.
And as to being "forced" to put your child on stimulant medication — it can't happen. You are the one who has to go to the doctor and get the prescription. You are the one who has to buy it — and you can only get a 60 day supply at a time, and your child must have a physical every four months to make sure his health isn't being adversely affected.
But if all other interventions are failing to help your child, it might be time to look at whether you really have your child's best interest in mind by continued refusal to consider stimulant treatment. We were very concerned about using stimulants with our son because we feared we were setting him up for addiction — both his father and I are in recovery. However, current research shows that those diagnosed with ADHD who do not use of stimulant therapy are at double the risk of drug abuse (especially the stimulants cocaine and methamphetamine) as those who do receive stimulant therapy.
Stimulant therapy is not a cure-all: it is a tool to help the child slow down a bit until he or she can learn to stop before jumping ahead into an ill-considered action, to plan and organize.
And a disability diagnosis is never an excuse for inexcusable behavior. It's a reason for why that behavior exists in the first place, and an invitation to figure out how the disabled child can learn not to behave that way.
I was in special education, and it harmed me.
There have been a handful of people who have made this assertion in the various A Little Bit Special diaries, and one who e-mailed me. There have been many more who have made the opposite assertion — that they wished to gawd that their disability had been diagnosed and treated when they were in primary and secondary school.
In my own life, my brother is one of those in the second category. He's a brilliant man, now in his late 50's. He's also severely dyslexic, but back in the day when he was in school, "special education" was only for the mentally retarded. As he put it "I never passed a spelling test, and could never figure out why". He managed to graduate from high school, went into the Navy, and then on to college on the GI Bill. By then he had married, and his wonderful wife had figured out what was going on. She coached him through getting his degree, and through part of a master's program — double-checking all his work for errors. He now teaches shop, and is a craftsman of the highest caliber (double and triple checking every measurement to make sure he's written the numbers down correctly). And he's a very good teacher, especially because he knows that a lot of the boys in his shop class end up there because they have undiagnosed learning disabilities. But his greatest regret is that that he was unable to pursue a degree in engineering — because his learning disability was unrecognized in his childhood.
If you feel like you were harmed by your diagnosis well — at least you had a chance my brother never had.
Further, when a child with a diagnosis reaches a certain age, he or she should have the opportunity to be a part of the treatment of that disability. The law says that at 14, a child who is able should be in attendance at the IEP meetings. When our elder son went into middle school, he decided that he didn't want to take stimulant medication anymore — and we acceded to his wishes, as long as he was making progress towards controlling his ADHD without the medication. Yeah, it was a rocky road; he flunked most of his classes for not doing homework (while doing brilliantly on long-term projects; go figure), but he has progressed to where he's having occasional, rather than constant, outbursts in class.
Knowledge is power, and avoiding knowledge out of fear is ill advised. Once you have the knowledge, and know what is going on with your child, then you can make a rational judgment upon how to proceed. But to avoid knowing is to, in my opinion, to not love your child just as he is — warts, disabilities and all.