Sunday, December 9, 2007

Syndromes, Disorders and the Way We Were

I've been rather distracted lately.

My nephew was diagnosed with Sensory Integration Disorder (or Dysfunction, depending on who you talk to). According to Time Magazine, it's the new ADD. I wouldn't want my nephew to have to suffer with some unpopular ailment, god forbid!

So what is SID? It's a neurological disorder when your brain/neurons don't accurately process information from your near senses. Who knew there were near and far senses, right? The far senses are the five senses we generally think of when we thinks of "senses." The near senses are balance from the inner ear, the nerve endings all over the body and the brain's ability to know where any or all of the appendages are at any given time. So, how does that translate into symptoms?

According to A. Jean Ayres, Ph.D., OTR, who first described the interaction between these senses and the brain, these are some of the symptoms:
An acute awareness of background noises
Fascination with lights, fans, water
Hand flapping/repetitive movements
Spinning items, taking things apart
Walking on tip-toe
Little awareness of pain or temperature
Coordination problems
Unusually high or low activity level
Difficulty with transitions (doesn't "go with the flow")
Self-Injury or aggression
Extremes of activity level (either hyperactive or under active).
Fearful in space (on the swings, seesaw or heights).
Striking out at someone who accidentally brushes by them.
Avoidance of physical contact with people and with certain "textures," such as sand, paste and finger paints.
The child may react strongly to stimuli on face, hands and feet.
A child may have a very short attention span and become easily distracted.
A strong dislike of certain grooming activities, such as brushing the teeth, washing the face, having the hair brushed or cut.
An unusual sensitivity to sounds and smells.
A child may refuse to wear certain clothes or insist on wearing long sleeves/pants so that the skin is not exposed.
Frequently adjusts clothing, pushing up sleeves and/or pant legs

So that, almost exactly, is my nephew. He has been refusing to were anything without long sleeves and long pants for the last two years. We've been trying to figure out how he's been surviving the unbelievably hot Austin summers dressed like this. Now we know. He hates the beach because of the sand. He actually tells you "Not so high" when you push him on the swing. And apparently, he can't complete activities requiring multiple steps ~ like riding a tricycle. I feel so guilty for having my father get him one last year. He tried it once and then refused to ever use it again. We had no idea he physically couldn't.

But my sister and I have both confessed to experiencing many symptoms of his disorder through out our lives ~ I have texture issues with food and surfaces, can't cut on a line and have no balance; she can remember going through many of the diagnostic tests she watched him take. Could we have wandered through life firing off the wrong neurons? Or the uglier question, for me, the one I don't share with her, does this mean he'll follow me to additional diagnoses?

But for now he's doing well with his therapy. He's trying more complicated games and becoming less fearful of falling ~ image how scared you'd be of falling down if you had no balance? It exhausts him. It exhausts my sister. All of us worry. He's otherwise exceptional. My mother wants my sister to push for the school district to take over the cost of his treatment, but I'm afraid he may be placed in treatment with autistic or mentally disabled children, since this disorder occurs more often in children with autism or mental retardation. My nephew is gifted, scary smart. His vocabulary is enormous and he's very articulate.

But for now, we just wait to see what happens next.

In the meantime, the NYT published an article about parents identifying with their children's disorders ~ like me and my sister did. I couldn't stomach the first reader comment however and got to it too late to post a response. So, I'm posting it here! Below is a link to the comment.

Morons Masquerading as Experts

My respectful response: Look you moron, try reading a medical journal once in a while before making statements regarding the existence of genetic evidence or lack there of. There have actually been four different genes that have been identified as being related to major mental illness. Genetic researchers believe their may be as many as 50,000 genes that have a role in some type of disease involving the brain function. AND, the twin studies, especially those done with identical twins raised apart looking at schizophrenia and bipolar disorder as EXTREMELY compelling. AND, don't forget the significant genetic research done with Amish populations where no stigma is attached to mental illness and no drug or alcohol can be used to self medicate and cover disease.

Next time, do your homework, DOOFUS!!!