Thursday, April 4, 2013

"...just like paperwork but harder to read."


AUTISM- IT’S JUST LIKE THE SAT’S!

Writing about our difficulties finding a developmental physician the other day reminded me of all of the paperwork that our autism journey has entailed so far. Environmentalists, I hate to break this to you, but it may not be cow farts or toilet paper or gas-powered vehicles that are to blame for the waning condition of our world.

It’s the ‘Tis.

The sheer amount of paperwork that surrounds us is astounding. Each doctor that we contacted sent us a health history to be filled out, and each was no less than 20 pages. We were given brochures on how to find support and pamphlets on research. There were packets that detailed our rights as the parents of a child utilizing the Early Intervention Program/school system and charts to show how much it would cost us. There were receipts for specialist visits (speech, audiology, etc.) . There’s a summary page for each therapy session (3 times a week plus one per month). I kept all of it in two large, sectioned binders that took about 9 months to outgrow. Now, everything is kept in my very large, Famous Red Binder, which was provided by CHOP to families of children with a chronic illness or disorder. The binder helps me keep the paper trail of PJ's doctor visits, therapy, IEP's, etc, organized and accessible. 

Amid all of that, there is one, single-page worksheet that will haunt me for the rest of my days.  It is only one sheet but, trust me. If you go on this autism journey you will see this sheet many, many times. It’s the M-CHAT.

The M-CHAT is the Modified Checklist for Autism In Toddlers and is a clinical screening tool to determine if a child is at risk for autism. It asks questions that, mostly, concern behavior and communication, for example “Have you ever thought your child might be deaf?” or “Does your child ever stare at nothing or wander with no purpose?” Most pediatricians will offer the M-CHAT during your child’s 12, 16, or 18 month well-check- ours offered it at all three.  Some answers may prompt a follow-up question to gain further insight into your child’s possible risk. Most children will score at least one “red flag” in the first round. Kids are just quirky like that. The follow-up questions help to separate quirk from ‘Tis.

The M-CHAT is a great tool, and it is impressive how a few key behaviors can help determine the risks for autism. The test in and of itself was fine, but holy crap. We must have filled it out eight. billion. times. Or, you know, a few less. But amid all of that paperwork, the M-CHAT was always lurking. We filled one out in our pediatricians office when we first voiced our concerns. There was an M-CHAT included in each packet we filled out. At our appointments, we filled out yet another M-CHAT with the clinicians! And let’s not even talk about how many times Pete and I would fill out the M-CHAT after PJ was in bed and we were discussing our fears and concerns!

(Yes, we filled it out often. It was oddly reassuring to go over it and say “Oh, he’s doing {insert behavior here} much less now, right?” In retrospect, I realize it was a lot like getting a splinter and going to the Googles only to get done clicking and be sure you have Ebola. Hey, I never said we had any idea what we are doing here! )

After a while, I could look at something PJ was doing and think to myself “Ah! Question 4!”. It was a little insane. Thankfully, after the first few months, the paperwork trailed off (although I imagine there will be another surge when PJ starts school in the winter).Once we chose a developmental pediatrician and our other specialists, there was only the odd paper here and there as we didn’t have any large intake packets to fill out. But the binders remain as the reminder of all of the trees that were killed by our autism diagnosis. Oh, well. He doesn’t really have any yet, but if PJ starts developing any repetitive behaviors, we’ll try to encourage one to be recycling.

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