When we became parents, we had no idea we’d have to be more organized than Martha Stewart how many forms we’d have to fill out and how many stats we’d have to keep on our progeny. I can’t even begin to estimate how much paperwork I’ve filled out for my 3 kids for generalists, specialists, naturopaths, summer camps, after-school activities, schools… But Roman’s pile is the biggest of all, by a country mile.
Every time you sign your kid up for a program, a therapy, or a camp, and ditto on parent interviews for developmental assessments, hammering out the yearly school Individualized Education Plan, qualifying for the Katie Beckett fund, getting in-home support, respite care, pre-surgical workups, or seeing a new specialist, you’ll need to know when he first spoke, crawled, walked, pointed, fed himself, potty trained, ditched the sippy cup, buttoned, zippered, tied laces, brushed teeth, washed hair, and on and on ‘til the break of dawn.
And just like in the Ginsu knife ads, But wait! There’s more! Autism is gregarious, and likes to bring along friends like Attention Deficit Disorder (ADD with optional H for hyperactivity), Sensory Processing Disorder, Obsessive Compulsive Disorder, Tourettes, Epilepsy… These are called “comorbid conditions” - dead sexy, right? And we were 4 for 5 on that list before Roman’s successful seizure surgery six years ago (knock wood!).
I think our medical record keeping ways are about to undergo a huge digital shift, and there might already be an app for that. But in the meantime, learn from my motherly mistakes and don’t recreate this particular wheel every. Single. Time.
Do yourself a solid, and keep a running log of your kid’s progress at the ready, and on your person. It can be as simple as a mobile-accessible cloud-based Google doc - or a note that you keep adding to on your phone - but you will need access to it more than you can imagine.
And you’ll want to be specific - on language, how many words does your child have? How many words does he stuff in a typical sentence? Are they in the right order? Is his language scripted? Does he have echolalia? Is his vocabulary trending upward? Are words used in proper context? How often does your child cuss a blue streak? Is this triggered by anxiety or frustration, or just for pure shock and awe? How is his verbal timing and prosody? (Isn’t it great that words like prosody just trip off our tongues now? We’re learning SO MUCH!)
With 3 kids and above average medical histories, I barely remember my own name when put on the spot. Imagine the day when you arrive at the new specialist’s office, whip out your list, zip through the questionnaire, and return that clipboard to the front desk in record time. You will be a true spectrum superstar. Spike the ball, sister!
And hey, that might be a cold comfort, but at least it’s a time saver.