Like me, I'm sure you have your own team of experts for children with special needs. Like me, I'm sure at this point you could qualify as an expert.
This is on my mind because today I read a fascinating New Yorker article, The Hot Spotters, that mentioned an inspiring doctor, Jeffrey Brenner, who works in an impoverished city in New Jersey. After he started reaching out to locals with the heaviest medical needs and giving them more personalized attention, he cut their hospital visits by 40 percent and their medical expenditures in half. I loved this quote:
"My philosophy about primary care is that the only person who has changed anyone's life is their mother. The reason is that she cares about them, and she says the same simple thing over and over and over."
It's so very true, especially when you're raising a kid with special needs—although obviously, there are plenty of caring dads out there, too. And to be sure, we have a veritable team of experts: assorted therapists, teachers, a pediatric neurologist, a developmental pediatrician, a physiatrist. But ultimately, Max's care boils down to me and Dave. Some days, the responsibility feels too great and I wish there were an actual expert overseeing Team Max. I want to make sure we're doing whatever possible to make Max's life better, easier, and more enjoyable. I want to make sure we're enabling him to get past his physical challenges and make his way in this world.
The other week, I realized we needed an adaptive handle for our phone so Max could better pick it up. Duh. The occupational therapist who sees Max at home hadn't thought to recommend it, and it had never before occurred to me, either. Max doesn't ask to make calls—but maybe he would if there were a phone he could more easily grab. The OT got the above handle and attached it the other day. So far, Max hasn't been dialing up girls, ordering things from infomercials, or prank calling, though I can just imagine that conversation:
Stranger: "Who is this?"
Max: "Ur-ul AX!" ["Purple MAX!"]
Stranger: "Huh? Who is this?"
Max: "Ur-ul AX!"
Stranger: "You have the wrong number!"
Max: "Ur-ul AX!"
I'm glad the phone handle occurred to me. I wonder what other stuff we're not thinking about that could help Max. But there's just me and Dave and Team Max, doing the best we can.