Thoughts on "Special Needs" from an Atypical Household

Note (12/17/13): I'm gradually moving selected posts over from my old blog.
This was originally posted in November, 2007

I was listening to a bit of an NPR program on the way to Wal-Mart. They had been interviewing Jonathan Mooney. As a child, he received extensive school-based services for learning disabilities, including dyslexia. He described a plethora of efforts to "fix" him, including making him wear purple glasses to "treat" his dyslexia. ("YOU try going to school in purple glasses," he said. He's got a point). He also said, "I took enough medications to kill a small farm animal."


Mooney did learn to read and write, and he went on to earn a degree in English Literature from Brown University. He started Eye to Eye to support students with "special needs."

I only heard a few minutes of the program, but I did catch a few interesting points. One thing Mooney emphasized was the pitfalls in our remediation-based system. We become hyperfocused on fixing what's "wrong," and forget to focus on a student's strengths. We need to find the right balance between remediation and truly concentrating on a child's skills and gifts.

At this point, I was nodding my head and saying, "well, YES! Of course." This point seems obvious to us home educators, I guess. And those of us who home school "differently wired" kids ponder this often. But, at times, even we become so wrapped up in our responsibility to help our kids overcome their difficulties that we lose sight of this. I know I do.

Mooney gave a dramatic example from his own childhood. Spelling was determined to be a weak point. So it was decided that he would spend an extra hour each day focusing on spelling. They even came up with some very innovative ways of trying to accomodate his kinesthetic learning style. On Monday, he spent an hour drilling spelling words with flashcards. On Tuesdays, he spent an hour tracing his spelling words in sand. On Wednesdays, he spent an hour building his spelling words with blocks. On Thursdays, he explored the words through interpretive dance. (Now I would've liked to've seen THAT!) Every week, he went through all this, and every week he failed his spelling test.

Finally his mother decided "that's why God invented spell check," and pulled the plug on this madness. Apparently, as a Brown graduate and published author, he hasn't let his abysmal spelling skills hold him back.

The thing that strikes me about this is the opportunity cost. What else might he have been doing with that 5+ hours each week? What might students with learning disabilities do with some of the time they spend in resource classes? Doing something they really excel at? Drawing? Building something? Playing soccer?

I wonder what route my son would have taken if he'd gone to public school. James has ADHD (in the opinion of his doctor and ... apparently ... everyone who's ever met him) and seems to be a classic "right-brained" visual-spatial learner.

James was a "late reader," by our country's standards; he started really reading when he was about 8. At 9, he still reverses some letters and numbers. He's not an avid reader, and he likes writing about as well as he likes having a sharp stick jabbed in his eye. I don't think he's truly dyslexic, but he wouldn't be considered on top of the normal curve either.

If he were in school, I'm willing to bet his teachers wouldn't have been as relaxed as I, letting him wait until age 8 or so to start reading and writing. In school, it's become a bona fide educational emergency if you're not literate by the end of Kindergarten. Maybe, with plenty of consistent prodding, they would've gotten him reading "on time." Maybe they would have fed him a steady diet of brain numbing books and gotten him up to speed. On the other hand, they might have decided he needed Title I and, later, special education services.

What has he done with the time he might have spent in classroom reading groups and resource classes? Listened to some really good books. Made up stories and cartoons. Played soccer. Built things. Created lots of art. Made friends. Moved ahead in areas of academic strength, like math. Run around outside, being a kid.

Maybe I am digressing a bit. (No surprise, there.) I am not minimizing the importance of special education services for kids who need them -- I've been down that path, too. I'm not denying that schools can, and should, provide meaningful remedial services for kids with "special needs." And many kids really enjoy resource classes and truly benefit from them. I get that. I just think our educational system has lost perspective. And we're not giving kids with "special needs" a full opportunity to explore areas they excel in and use their time to spread their wings in those areas.

Look at Jonathan Mooney's quest to become a better speller. Spelling is a fraction of the entire writing process, which just one part of all the academic areas there are to be explored. Five hours a week of trying to "fix" that weakness is disproportionate. It's time that could have been spent focusing on something at which he could really succeed. And trying to push a child to read and write if he's not developmentally ready, which, for many kids, comes at 8, 9, 10, or later, is probably wasted time. It's somewhat akin to trying to "make" a kid learn to crawl or walk by dragging him across the floor.

Another thing I heard Mooney discuss was our evolving medical model of learning disabilities. I only caught a line or two, so I am paraphrasing and embellishing. As our understanding of neuropsychology advances, the neurological basis of things like dyslexia and ADHD will probably become more clear. Mooney said MRI imaging can already identify left-brain differences in people with dyslexia and frontal-lobe differences in those with ADHD. I don't know whether that's true, because I haven't taken the time to look it up. But it is an intriguing prospect.

As I see it, this kind of progress is a wonderful thing. It brought us past the deeply entrenched notion that schizophrenia and autism were caused by bad mothering. (That wasn't so long ago, either. I can only imagine what mothers of kids with these diagnoses suffered during the 70's.) It brought us beyond that, and it will probably enrich our understanding of learning differences. But that means we're going to have to re-examine our concept of the medical model. Because right now, if something can be medically explained, it's a "sickness" or "dysfunction" that needs to be "fixed." If alcoholism is a disease, then we can and should "treat" it. But does this apply to things like specific learning disabilities and ADHD? Are these differences something to "fix," or simply a different way of being?

As Mooney pointed out, and I am fond of saying, these "disabilities" bring both gifts and challenges. People with dyslexia or ADD commonly have tremendous visual-spatial gifts. Those with NLD (Non-Verbal Learning Disability) often have enormous verbal abilities. Then there are things like autism and Asperger's which bring their own set of strengths and challenges. Do we want to try to "fix" these things?

Would I want James to be an avid reader and a strong writer if it cost him his gifts in math, art, and other strongly visual-spatial areas? Would I want my daughter with NLD to be more competent at math and visual-spatial reasoning if it diminished her verbal ability? Would I want my Aspergian kid to be "normal?" The answer to all those questions is NO. Of course, as parents, we want to make things easier for our kids as much as possible. We don't want them to be held back from accomplishing goals they choose because of their limitations. That brings us back to remediation. As Mooney said, I think it's all about finding the right balance.

As the medical model offers new ways of understanding these kinds of differences -- neuro-science seems to be growing by leaps and bounds -- can we expand that model past the concept of "disease" and "cure?" For that matter, will we ever to be able to get past the idea that everyone should function optimally in the same areas and under the same set of circumstances? If and when we do, we may make some real progress is understanding and celebrating the diversity of human beings. I hope I live long enough to see that day. ;-)
******************************************************************************* September, 2011

I just re-read this post, from almost 4 years ago. Our journey has become much more difficult and complicated since then, but my perspective hasn't changed much. Shortly after writing this article, I started working with an RDI consultant for my Aspergian kid, who -- in my oh-so-humble opinion -- is brilliant, but struggles with day-to-day things others take for granted. Our approach has evolved gradually over the years, and several major crises have taken us back to square one. But this beautiful kid, now 17, has made tremendous strides.

The thing that maintains what, in my case, passes for sanity is remembering that there's nothing magical about "coming of age," starting to work or attending college at 18, or 20, or 23. It will happen when the time is right. Many kids with Asperger's achieve independence at 26 rather than 18. That's true of neurotypical teens as well. Honestly, I think in this day and age, adolescence has been extended, and the old rules often don't apply. I'm not saying I don't worry about my kids achieving personal and financial independence. Believe me, I do. I'm just learning to trust their own unique timing.

James' literacy has blossomed. He'd rather video game or build with Legos than read or create literature, which is fine with me. With a little maternal prodding, he started writing a bit of fiction. He urged me to drop my efforts to formally teach him spelling and grammar, at least for the time being. With a great deal of nail-biting, I did this -- trusting him to find his own way -- and he's made tremendous strides.

Patricia Elizabeth, my other atypical kiddo, is now 7 and still the self proclaimed center of the universe. For years, we've been back and forth from UVA because of a suspected genetic disorder which can't be conclusively ruled in or out. The docs change their story every year or so, based on the latest research. At one time, we were told she almost definitely had neurofibromatosis, and to be on the look-out for various physical and neurological abnormalities, including a 50% chance of learning disabilities. Now there's a strong possibility NF may be ruled out in December!

There's probably nothing "wrong" with her except for the shadow of Asperger traits that runs through our whole family, with all the glorious, exasperating quirkiness that goes with it. Who knows what's around the next bend in the road?