Saturday, May 24, 2008

"Patient Voices: A.D.H.D."

My good friend sent me a link to a New York Times piece, "Patient Voices: A.D.H.D.", an excellent, brief video collection that reminds me of my foot-tapping-hair-twirling-word-blurting self. And the filmed children patients helped clue my older daughter in that she is not the only one in the world (besides her mother, that is) who has Attention Deficit Hyperactivity Disorder.

We come by it honestly: ADHD runs in our family. My two cousins have it and so does my nephew. I am quite sure there are other members of my family who could be diagnosed with it as well, but it doesn't seem to interfere with their lives enough for them to bother. They've learned to compensate, as I did until after I had babies. They just wiggle a lot and annoy people.

For most of my life, I compensated through structure. School helped. Adulthood seemed to make it more difficult, however. The ADHD was harder to manage because life threw so many changes at me that it was harder to live by a schedule. College classes and homework might have provided solid structure, but babies don't care about our structure, as any parent will tell you. It was quite a challenge.

ADHD, as the Times piece points out, can be both a blessing and a curse. ADHD allows my mind to wander into places that some people's minds never get to. Multitasking and a wide variety of interests help keep my life (and my loved ones') interesting to say the least. Depending on the day, they would tell you if "interesting" is good, bad, or just plain irritating. People sometimes have difficulty following my rambling, ambling walks through winding, diverse paths. And that's okay. Those who know and love me best just let me do it while they follow at a safe distance.

Here's the curse, especially for my daughter at the moment. We blurt. We tend to be impulsive. We do things that some people just don't understand. We get messy and distracted and well, hyper. But you wouldn't be able to pick us out in a crowd and say, "Hey! There's someone with ADHD!" That's also a curse because when people don't know what your condition is, they think you're weird. It's an invisible disability. It's not an excuse, but it IS a disability.

Both my daughter and I have had tremendous difficulty with medication. Medication has had serious, negative side effects for us in the past, so much so that I've decided not to take medication. Since I've compensated for most of my life, I decided I can continue to do so now that my "babies" are growing up. I use lists and email and clip my keys to my purse. I'm learning to hold my tongue and practice tact. My daughter, however, isn't old enough to manage yet, and while she's had some seriously bad bouts with medication, her current meds help keep her focused at school and have virtually no side effects.

My daughter is a very bright child, and like any other child, needs direction and focus. But unlike other children, she needs much more. I truly believe that she will eventually not have to take medication to be successful in school. Probably this time won't come until college, but the way she is growing, that doesn't seem so far away.

Too many people think ADHD is a myth, probably because when the medical community first became aware of it, the condition was over-diagnosed, confused with other conditions. This gave people with ADHD a bad rap. "That kid just needs more discipline." "That woman just needs to shut up and clean her desk." "That guy is totally weird." "Why is he always bouncing his leg?" But ADHD is a proven medical condition that is treatable. The source of ADHD is neurological. Sometimes people with ADHD have more than one neurological disorder because our nervous system is, well, kind of different.

Like the little girl in the Times video, I suppose you could call ADHD a disease. I like and dislike this word. A disease to me sounds somehow so fatal. And if ADHD is left untreated or poorly managed, it certainly could be. I prefer to think of it as a condition. For me, it's a permanant condition, something I have to work around. ADHD is a disability. It makes things harder, just like any disability does. But a disease? Hmmm.

On the other hand, whether I like the term "disease" or not, the little girl is correct. By definition, a disease is, "a disordered or incorrectly functioning organ." Neurons and the brain are not separate from the body. The brain is an organ, so why shouldn't ADHD be called a disease? It is. That girl has given me something to think about. She's given all of us something to think about.

It's important for parents of children with ADHD to talk to other parents whose children or family members have it as well. Children who don't get diagnosed right away often have a "disciplinary" history that labels them as "bad kids." Once these kids get the right treatment, however, they have the chance to lose the label. But sometimes, the damage is already done, and this affects both the child's and the parent's self esteem. Kids don't WANT to be "bad." Parents don't want them to be "bad" either. It's stressful for everyone and we need support.

The more the media and other communication sources highlight and explain ADHD, the better all of us will be, especially those of us who have ADHD and families who want to understand it. It's important for people to know what the symptoms could be, that ADHD for one person might not manifest itself in the same way as another person.

Recognizing the symptoms and getting good treatment could mean the difference between a life less than productive and a life that proves successfully living with a disability is more than just possible. It's probable.

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