Thursday, August 9, 2012

The asterisk

I have this thing. The unspoken asterisk that I often add to people's commentary. The things I think they are saying in their head but would never utter outloud because they don't want to hurt my feelings.

"Wow, you ran a half-marathon? Congratulations that's quite an accomplishment." (*: for a chunky monkey like yourself)

"Knitting? Yoga? Running? Dance class? Where do you find the time?" (*:clearly at the expense of quality time with your family)

"How in the world did you end up at APT?" (*:clearly they could have hired someone vastly more educated and well suited than you)

And that's the thing. That asterisk just lives in my head. I don't actually believe it. And I've gotten MUCH better at ignoring it or even eliminating it in some cases (in my career, for example, I'm confident and good at my job), but at some level it's always there. But it's always just been about me. It's my short-comings, I absolutely don't add the asterisk to others, it's just been about me.

Monday we had a doctor's appointment where that damn asterisk was applied to my son. MY SON. He aged out of birth to three in February where he was getting PT and OT weekly. At that time, he enrolled in the Early Childhood program at Spring Green Elementary and was evaluated as not qualifying for PT but he received OT twice a week. But school, and therapy, ended in May. About 10 weeks ago. Now, let's be clear. Aaron and I do regular therapy with Henry. We use his constraint cast and he gets ipad time, we stretch regularly, work on his core strength and balance and he's constantly active. Pedalling his bicycle with two feet, pushing his favorite shopping cart with two hands, working on building those neural connections through countless everyday activities. What we don't do is have a regular weekly session with a PT or OT. And why don't we do that you may be asking yourself? Clearly that's something we should be doing. Our insurance provider disagrees with that though, and deems PT and OT as "Developmental" therapy which isn't covered by our policy. They do cover PT or OT related to an injury, but since Henry's stroke was in-utero, it's considered congenital and not an actual "injury" that they can treat. So we haven't had therapy for the summer, like countless other families who rely on the school district for their services, we do what we can, and hope we don't regress too much over the summer.

Monday's evaluation had our (very competent) doctor (whom we love) tell me that "All things considered, he's not doing too bad. I mean, you haven't been in therapy, and the purpose of the evaluation is to see how he's progressed from therapy, so we can't expect to have a great evaluation. You're doing the best you can though, considering." 

I beg to differ, madam. Henry is not only doing "not too bad", he's freaking amazing. He's running and jumping and skipping and dancing and giving high fives and swimming on his own. He's bossing us all around with his mad verbal skills, and sleeping in his own bed and thinking about pooping on the potty and is laying the groundwork to someday rule the world. That's how Henry is doing. There's no asterisk anywhere near him, so take it out of your medical write up. We're not just doing "the best we can with what we have", we're doing a damn good job of raising two amazing little people. So get that asterisk away from my son.

In her defense, she was talking out loud to try and figure out how to write an order for OT and PT that insurance would cover. Ultimately she went with a "Pre-Botox evaluation and treatment" and "Post-Botox evaluation and treatment" order that should at least get us through the end of the year. But I left deflated, feeling like I had missed an opportunity and my son was paying the price. And I don't know how to change that. I don't know how to convey to insurance providers the value of Developmental therapy in a toddler's life. I appealed their denial of coverage and met with their board, shared my story, gave it all I had really, and they still said no. I wonder if the ACA will change those requirements, if they'll be forced to cover these essential therapies. Medicaid covers them, but most private insurers don't. And if Henry were on Medicaid, his therapy through the Birth to Three program would have been covered. (Note: In spite of not being covered by our insurance provider we still received services, the county paid for them though because our household income was too low for a cost-share--that's only available as an option until the child turns 3). I'm eager to see the ACA implemented fully, and have private insurers meet the same standards of coverage that Medicaid has provided for decades.

Until then, I'll continue to battle that damn asterisk. To work constantly to get Henry to be competitive with his typically developing peers, to make progress, to communicate effectively his heart's desires, to poop on the potty. And when the day comes when insurance providers actually cover the therapies we need, well, we'll just have more people on our team to help with this journey. 

Hug your kids/partner/pets, and kiss the asterisk goodbye.


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