Waltzing With Bear
A rambling by Donna Scanlon,
March 2002

His name isn't really Bear, but I've called him that since the time he was born early one morning in January. Perhaps it was his enormous shoe-button-bright brown eyes, or his stocky, cuddly body that prompted the nickname. I used to waltz him up and down the apartment, singing "Waltzing With Bears."

In the early part of a child's life, particularly a first child, you're so concerned with the everyday dangers that you don't look too far ahead. You worry about the child gate being latched properly, about sharp corners, about the safest place for a car seat. You go for the well baby visits and tick off the important statistics of length, weight, developmental milestones. If you think at all about things that can happen down the line, you file them away.

So it was with Bear until the day three years ago when he was diagnosed with Asperger Syndrome. The diagnosis came after two or three years of struggle, stress over his behavior, endless meetings with teachers. He was tested at age 4, and since his intellectual skills were at a high level and his motor skills very low, it was suggested that his "meltdowns" stemmed from his frustration at not being able to execute his ideas. A child psychiatrist evaluated him and did not find anything indicating an official diagnosis; she gave us a discipline program to follow. Finally, at the urging of his kindergarten teacher at the Waldorf school, we took him to a doctor affiliated with another Waldorf school in hopes that there might be a physical cause that would respond to homeopathic treatment.

This was the doctor who said "I think Bear has Asperger Syndrome." He didn't know a lot about it, but he felt that Bear exhibited some of the symptoms; we would have to go to a neurologist for a formal diagnosis. He also said that Bear would probably have to be in special, small classes for the rest of his education, a thought that didn't thrill either me or my husband, although this turned out not to be the case initially.

On the long drive home, I experienced a curious mix of feelings. On the one hand, it was likely that my son had a condition that was going to affect not only his life, but the lives of everyone around him. On the other, I felt both relief and hope. I had a name for it, something I could research. He wasn't a rotten child. We weren't rotten parents.

Asperger Syndrome, or AS, is a neurobiological condition that currently falls into the autism spectrum. Some people think of it as a high functioning form of autism while others consider it related to autism. Identified by Swiss psychologist Hans Asperger in the 1940s, it was only in 1994 that it was included in the DSM-IV, the diagnosis "bible," as an official diagnosis.

No two people with AS are the same, of course, but there are common characteristics. They usually demonstrate difficulty with social skills; they don't seem to assimilate them through nonverbal behavior the way most of us do, but must learn them by rote. Like any rote skill, levels of success vary among individuals. They often obsess on an area of study or topic and are ready and willing to talk to anyone about it, anywhere, and not stop. They seem odd or eccentric because they do not perceive the world in the same way -- think of the "absent-minded professor" who is brilliant in his field but can't seem to function socially and you have an idea of what a person with AS is like.

Another common characteristic is difficulty with sensory issues. Sounds can seem much louder to the person with AS -- we have earplugs for Bear to wear at any time when things might be too noisy for him. Bear also has sensory issues with food, both taste and texture, and at times, the mere odor of food such as cooked eggs can make him ill.

Often, the inability to cope appropriately with situations results in angry outbursts or odd behaviors or statements, and because these kids are often intellectually bright, the assumption is that they know better -- but that's exactly the problem. They don't. It is so important to remember that AS is all about stress. It may feel to us that we're living on the edge of an unpredictable volcano, but for Bear, every day is like crossing a minefield -- and most days, he has the map from the day before. Fortunately, AS is becoming more widely recognized, and professionals who work with children are learning more about it. (For more detailed information, go to one of my favorite Internet resources, the O.A.S.I.S. website at http://www.aspergersyndrome.org.)

After a pediatric neurologist diagnosed Bear, I was at once relieved and depressed. We wanted the diagnosis, sure, but I still felt as if there was a little black cloud enveloping me. As much as I could appreciate that having the diagnosis meant that we could start planning, I was daunted by the road ahead of us.

I still am daunted. Every day brings a new challenge; every challenge means another decision accompanied by the fear of making the wrong one. Bear has been enrolled in an after-school program that he attends twice a week to work on social skills and management, and he's progressed to the point where we can start thinking about withdrawing him. For a few years, he was able to be in the regular classroom, but for now he's in a small emotional support class, where some of the pressure is off him and where he gets the behavioral reinforcement that he needs. He may be able to go back to the regular classroom in time. He has a therapeutic support staff (TSS) person in school with him to help keep him focused and to provide backup in dealing with social situations.

We're learning the ropes of the special education process, during which I've gotten in touch with my Inner Hellmommy, and we're getting help in advanced parenting skills as well, because Parenting 101 just doesn't cut it here. Too often, we all dissolve into chaos, and too often, I feel paralyzed with fear for him. I do know that we're doing the best we can, and that's about all we can do.

I know there isn't going to be a TV-Movie-of-the-Week miracle for Bear, but I'm not singing any sad songs for him, either. He's a bright, creative little boy, and even if he breaks my heart at least once a day, he has something special to offer as well. So, my waltz with Bear continues; I just understand now that I have to be ready to switch to a polka or a tango at a moment's notice, and that makes all the difference. I can say for certain that I wouldn't trade him for a "normal" child for anything.

[ by Donna Scanlon ]
Rambles: 9 March 2002