I've heard a lot of you out there talk about how you deal with Alphabet Soup -- kids handed down a variety of acronyms for multiple disorders.
Well today, I'd like to introduce you to a new twist on this old favorite -- the Alphabet Fling. This game starts with various high paid professionals asking questions. They take everything in with the requisite serious gazes and knowing smiles. They take copious notes and spout out a litany of statistics. Then they gather some letters, throw them at the wall and see which one sticks.
Are you with me so far?
The ones that stay are then called official diagnoses. The ones that fall are replaced with new ones until either the child shows improvement or the family runs away screaming
UNCLE!
Sorry to be so bitter, but I'm once again losing my faith in the medical profession.
As I've mentioned, we've been going through a lot with Twin Sister lately. She once again has many a professional puzzled. Seems she defies all their neat categories and profiles.
We originally began testing at the request of her third grade teacher. While she tried extremely hard in school, she struggled in some areas and had an ever-waning attention span. We started with an IEP review, which promptly revealed that all her issues were figments of our imagination. She was pronounced perfectly "average."
Not convinced, we had her tested by Psychologist #1 who, after a couple of tests, was quick to diagnose her with ADHD. In her recommendations, she suggested we rule out dietary, allergy, sensory integration and medical issues. That lead us to even more evaluations by nutritionists, occupational therapists and various other specialists. Nothing striking was revealed, so back home we went.
When she continued to struggle we kept hearing the same phrase:
"Hmmmm, that behavior doesn't sound like ADHD." Our pediatrician recommended additional testing to see what else might be going on. After a visit to Psychologist #2 and #3, Bipolar NOS was added to the mix.
We spent a year and a half trying a variety of medications along with tried and true interventions, only to be back at square one. Our in-home team has been great but once again familiar words are haunting us.
"Hmmm, that doesn't look like Bipolar. Maybe we should test again." When I ask all those professionals what it
does look like, no one has an answer. They only scratch their heads. Again.
Right now, all I know is, we have a child who exhibits extreme moodiness, is irritable at best, and gets severely stuck on the most benign issues. The other night a two hour meltdown ensued after she was asked to clear the table before she began a painting project.
What I've come to realize is that all those so-called experts are just as confused as we are. Little is known about our kids. Why just until a few years ago, the medical profession didn't think Bipolar could manifest until later teen years. As for Asperger's, it wasn't even a diagnosis until the mid '90s.
There is little research available. These are kids after all. It would be unethical to use them as research subjects. Then again, what's so ethical about pumping them full of pills, many with unknown effects? Or subjecting them to strategies that are untested and unproven?
Why the more I see, the more I firmly believe that many of the interventions, the medications, and even the diagnoses themselves, are educated guesses at best.
Life is complicated. Its rarely linear. And, as I look at my house in all its glory, it is certainly not neat. So why the preoccupation with fitting our children into pretty little boxes?
In the end I believe the answers won't come from the doctors, the scientists, but from us the parents. We're on the front lines. We live this every day and love our children for who they are and not the labels they possess.
So, as I step down from my soap box tonight, the only advice I can leave for others is to trust your instincts. Don't be afraid to fight for what you think is right or against what you know in your heart is wrong. After all, accidental or not, we are the experts.
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Comments (1)
I must say, youve got one of the best blogs Ive seen in a long time. What I wouldnt give to be able to create a blog thats as interesting as this. I guess Ill just have to keep reading yours and hope that one day I can write on a subject with as much knowledge as youve got on this one!