Saturday, April 23, 2011

Military Medicine

Jack has been blessed for the past five years with Dr. Zernzach, a developmental pediatrician at Wright-Pat Air Force Base Hospital. Dr. Z diagnosed Jack and has met with him every six months since. He's answered countless questions, worked the system to get Jack the services he needs, and encouraged and cheered Jack on as he has made progress. When we were at the hospital seeing to Jack's foot injury, we saw Dr. Z across the atrium, and Jack said, "Dr. Zernzach is my favorite doctor."

So, of course, the Air Force is transferring Jack's favorite doctor to a base in Texas, to an administrative job in which he will not see patients.

No one, including Dr. Z, is happy about this. But that's the military for you: take someone who has amazing gift in one job and give him a different job that he doesn't want in a place he doesn't want to live. Yep. That's an awesome way to use taxpayer dollars to build morale and quality medical care.

Cynicism is smoke rising from the ashes of burned-out dreams.

Of course, I'm melodramatic in my disappointment. I know that Dr. Z will do a great job in whatever position he finds himself. I know that he will continue to advocate for quality patient services because he's a doctor and an officer and a gentleman of integrity. And in a few years, he can retire to private practice and do what he loves: see patients. I wish him all the best and send with him my undying gratitude for all he has done for Jack and for us.

We could transfer Jack's care off base to Dayton Children's, but the wait to see a developmental pediatrician there is l-o-n-g. Jack will be seen by Dr. Z's replacement in September, as per his regular schedule. But this also means that we cannot start Jack on attention medication until October (his teachers do not want him starting them at the beginning of the school year as their experience with that has not been good).

This delay frustrates me and George, mainly because it took us so long to work up the courage and conviction necessary to give meds a try and now we have to wait. At least we have health care; at least we have access to a major medical center that staffs developmental pediatricians; at least we'll get there eventually with the meds. Trying to look on the bright side, here. But it's hard.

After all, this is our son we're talking about.

Monday, April 11, 2011

On Report Cards, IEP Progress Reports, and Standardized Testing

The boys' third-quarter term ended, and the school sent out report cards and IEP progress reports. We also recently received their results from the Iowa standardized testing conducted in our district.

It's a good thing I'm somewhat comfortable with ambiguity.

Jack's report card was surprisingly good, but second-grade report cards do not feel like data to me. For instance, Jack received an A in social studies, yet I decided early in the year that we would not do social studies homework. The second-grade vocabulary list included executive, judicial, and legislative; I'm not wasting my time or Jack's to study these abstract terms. I learned about government in 7th grade. It was easy to learn at that time because my brain had developed the ability of abstract thought. Neurotypical 2nd graders in Jack's class learned the words but, when questioned about their meaning, did not understand what they had learned.

Is this education?

Well, it passes for education in Ohio because it's part of the curriculum mandated by the state. But the reality for Jack is that he is more than a grade level behind in math, and while his reading skills are good, his reading comprehension is hampered by short attention span and impaired ability to communicate understanding of what he reads. Consequently, we focus on math and reading homework.

I saw the enormous effort Jack put into reading and understanding a lovely story about Hellen Keller, but because the story doesn't repeat the fact of Keller's blindness and deafness, Jack didn't understand that she could not see or hear...even after reading the story numerous times at home and at school. How, then, could he understand the three branches of government? He hears branch and thinks tree.

Last night while we played snuggle-bunnies before bed, George spoke for Jack's stuffed Stitch doll. Jack said, "Stitch doesn't talk, Daddy. He's a stuffed animal." Then, George joked, "What!?! I didn't get a talking alien? The Disney store ripped me off. That was money down the drain!" Jack said, "Don't do that to Stitch!" He thought George was going to flush Stitch down the drain. We tried to explain what George had meant, but I don't think Jack really got it because he kept a death-grip on Stitch until George left the room.

Jack earned a B in science. This actually seems more reasonable to me. He loves certain things about nature, so he's willing and able to learn. For instance, he was fascinated with the phases of the moon...because he can see it in the sky, see how it changes each night. It's a real, concrete thing.

Jack's grades are the result of a modified curriculum to accommodate his needs and must be affected/inflated by the aides he works with. When he was given the Iowa Achievement test, he had no accommodations other than a teacher at his side to keep him focused. She couldn't help in any other way. The scores, needless to say, were very low.

This standardized data isn't useful either because Jack's academic skills are nowhere near as low as the standardized test would indicate. These low scores merely tell us how poor Jack's attention span is and how hard it is to motivate him to do things he does not want to do.

In the broader picture, these failed attempts to quantify Jack's academic achievement symbolize the failed attempts of neuroscience to describe exactly what causes autism or what therapies can help any given child. The experts can't even come up with diagnostic criteria that make sense, despite their dedicated attempt in DSM-V.

We parents in the world of autism are essentially forced into a world full of ambiguity, irrelevant data, uncertain courses of action. We make decisions to act, wonder if these decisions are right, fret over uncertain evaluations of our decisions, and try hard not to scream with frustration.

I crave data. When I get it, however, it tells me little. And I move on.

There's really no other choice.

How do you feel about your child's grades and test scores? Do you feel they accurately reflect his/her ability?