Neat Little Packages

From Guest Contributer - gouldie64:

I am a big fan of categorizing things. I create folders for my emails. I love to sort Legos (which, by the way, should be sorted by shape, not color). I am a big fan of tagging photos. For years I wanted a category for Dakota. I wanted to find a term that could neatly define him and explain his behavior and abilities to others.

When it comes to Dakota, however, attempts at categorization or labeling have not only failed, but have failed miserably and painfully. Recently Dakota's other parent (the regular contributor to this blog) suggested that we take Dakota in for an evaluation regarding his auditory processing disorder. My initial reaction to this was that I don't need an evaluation to tell me whether or not he has an auditory processing disorder. I know he has one. Just like I don't need my doctor to make that face when I step on the scale at her office. I know I weigh too much, so she can keep that little look all to herself.

My other reaction was to recall Dakota's other two "evaluations", both of which ended with parent(s) and child in tears.

Rhode Island - 2004: Dakota's first evaluation was a neurological evaluation which took place about a year after he came to live with us. There we sat, in a room with a physician and three residents, as evaluated every "anomaly" they could find with our child. Did you know that there is a medical term for "unibrow"? It's called Synophrys. We heard all sorts of terms that day: Synophrys, microcephaly, incurved distal metacarpal, pointed helix, and hirsutism. All of that those terms to say that Dakota has a unibrow and a small head; that his pinky fingers and toes point inward; he has a pointy ear; and he's a hairy little guy.

It's very discouraging to spend three hours watching and listening as a team of medical professionals catalog everything that's "wrong" with your child. The discouragement quickly turns to rage, whoever, when those cheeky little residents start to make bets on the root cause of these various abnormalities: ("I bet it's Fragile X Syndrome." "No way, dude. We're looking at a trisomy.") I don't know how much Dakota understood of what was being said about him that day. I distinctly remember, however, the meltdown that came later that night. In the end, his evaluation gave us nothing but fancy medical terms for a whole bunch of physical characteristics which may or may not be related to or caused by a genetic condition. That was helpful.

The second evaluation was an evaluation for Fetal Alcohol Syndrome (or Affect or whatever) and while there was only one physician instead of a team of physicians, the end result was pretty much the same. Perhaps this evaluation would have gone better had the physician not suffered from OCD. He repeated every procedure at least five times. One procedure, for example, was to compare the philtrum (that little dip between your nose and upper lip) to photos of philtrums, each of which had a numerical score. A smooth philtrum is a feature of FAS and establishing a quantitative description of the philtrum is one step in evaluating a person for FAS. Five times, FIVE TIMES, he held the photos up to Dakota's nose. Each time I said to myself, "It's a four. It's a four. It's a four. It's a four". Finally, after the fifth attempt, he wrote down a four. It was pretty much the same when he measured the space between Dakota's eyes, the width of his eyes, and the circumference of his head. For each he measured at least five times.

Then, for some reason he had to make some sort of evaluation of Dakota's testicles and this evaluation involved a little squeeze. On the first squeeze Dakota looks at me, his eyes widen, and he giggles. Yeah - that's not gonna last until squeeze number five is it? Squeeze number two and Dakota begins to look concerned. The doc goes in for squeeze three and Dakota starts to cry. I somehow restrain myself from throwing the doctor across the room. Instead I pulled away his hand and exclaimed, "You're hurting him!". He explained that he needed to finish his evaluation and I explained that we were very, very much done and he could leave while I dressed Dakota.

In the end neither evaluation gave us helpful information. You can Google Dakota's symptoms and you will come up with something called "Cornelia De Lange Syndrome". Big Whoop. That gives us a label, a neat little box in which we can file these seemingly random and unrelated physical features. We can tag photos of him on Flickr with "CorneliaDeLange" and his photos will be chunked with photos of other kids who look surprisingly like him. There is no known root cause for Cornelia De Lange syndrome. Children get included in this exclusive little club if they look the part, and Dakota looks the part.

I'm pretty much done with these evaluations. I no longer feel the need for categorization. Dakota is much more than a collection of physical anomalies, and cognitive disorders. He's my son, and that's the only label I need for him to have.