America's Next Top Toddler Sensation Idol-Type Person
Oh Hey What Up?

Dear Insurance Company: Please Define "Effective"

Our insurance stopped covering Noah's occupational therapy back in November -- conveniently, right around the time we hit our out-of-network deductible, and actual promised benefits would actually have to be paid by them, but they indicated that they'd be happy to consider an extension of the coverage, so long as we provided them with X, Y and Z.

Two months later, they came back and said that actually, could we also send them W? And expand on Y? And provide some background on Z? 

And we did, and Noah's therapists did. We got doctor's notes and his school typed up reports and then longer reports and then the insurance claimed we hadn't sent something that we actually had, and on and on it went. For seven months. We continued to send Noah to therapy, the claims we submitted anyway came back rejected, the bills piled up unpaid. For SEVEN MONTHS.

Then finally, a decision: 

Scientific legitimacy for sensory integration therapy has not yet been established. While accepted by occupational therapy standards of practice, there is disagreement in the medical community to the effectiveness of sensory integration therapy.



Noah never got mosquito bites, or at least, that's what I thought. I rarely, if ever, saw any welts, even when my arms and legs were covered in them. I assumed he had some kind of immunity to them -- if he did get bit, he didn't swell up, he never scratched. 

He never scratched anything, though. The ugly, scaly eczema that plagued him every winter seemed to bother me more than him. He hated the feel of lotion though, so sometimes I just left his skin alone, since he wasn't complaining. 

This winter, when the dry skin appeared, he scratched his body so hard he broke the skin, peppering himself with tiny scabs from his fingernails night after night. The itching, it turned out, was unbearable.

And this summer, he definitely gets mosquito bites.  I think he has all along. I just don't think he knew what to do about them. 


He walks barefoot across the grass, the beach, the scratchy welcome mat. He never used to.

He rides a bike, a scooter, the merry-go-round, the coin-operated cars at the mall. He never used to.

He says, "I'm thirsty." And, "I'm hungry." And, "I'm hot." And, "I'm cold." He never used to.


I remember the first time I heard him humming in his room, when he was supposed to be sleeping. I peeked in, expecting to see him singing to a stuffed animal or toy. Instead, he was violently rocking himself back and forth, flipping his head and torso back and forth, back and forth, with his hands tucked sweetly next to his cheek, in the sign for "sleep," though the fingers in one hand were wrapped tightly around a double-A battery, his attachment/transition object du jour.

He still stims. It no longer interferes with school, it's no longer quite so obvious to people who aren't looking for it, but I know he stims. He resets his vestibular system with a weird-looking full-body wiggle thing, and he still hums and lines up toys and squints at lights and chews on his fingers. Sometimes we can snap him out of it; sometimes he just needs to find his own way back to center. 

At night, though, he sleeps curled up with a stuffed rabbit he calls Knuffle Bunny. He hasn't rocked in close to a year.


I told another mother at camp about the insurance company's decision, bitching a little about the fact that if they really believed SPD/SID was bunk, they wouldn't have approved all those earlier sessions in the first place, or sent us on that seven-month paperwork goose chase, so WHATEVER, YOU CHEAP JERKS. Her solution: Take him back to the doctor and ask for a different diagnosis, one that they'll cover. 

The funny thing is, if we'd been able to see a developmental pediatrician last summer, I have no doubt that we'd have left with a PDD-NOS diagnosis, at the very least. But there was a wait, and by the time Noah was re-evaluated, he'd been receiving speech and occupational therapy twice a week for several months. "He's just...not," we were told, when it came to the Spectrum. He's a lot of things -- SPD/SID, dyspraxia, low tone, language delayed, extremely bright, this and that and this  -- but he's not any one thing that matches up with any one diagnostic checklist. Maybe he was, at one point, but not anymore, I mean, look at him

I'm sure, if we had pressed the insurance angle, we could have gotten someone to commit to a Spectrum diagnosis -- a diagnosis I've been accused online of purposely avoiding or not admitting to -- but all I ever really, genuinely wanted for Noah was the right diagnosis. We had it. I thought that would be enough.


Scientific legitimacy for sensory integration therapy has not yet been established. While accepted by occupational therapy standards of practice, there is disagreement in the medical community to the effectiveness of sensory integration therapy.

I respectfully, emphatically beg to differ.




Noah has grown so much, from what I can tell, and I'm hoping you'll get more support in the future. Don't forget that YOU are one of the points that will shed light on other kids with this condition, so keep writing! Best of luck.


My daughter has just recently been diagnosed w/autism and adhd. we had to pay out of pocket for all testing,no complaints. I know of a family that just had a daughter diagnosed w/bipolar and sensory issues. They are paying out of pocket for everything,no coverage for all services. You are not alone in this very hard very frustrating *thing* I call life. Lots of luck to you and Noah.


Dear Insurance Company,
Please SUCK IT. Unfortunately I know all too well what you're going through. I'm so very sorry that you're going through this.
We pay a RIDICULOUS amount of money every month, in insurance premiums, and then copays, for an insurance plan that covers most of what it needs to. Not all, and not as much as our son needs. And not without MUCH screaming, pushing and advocating on my part. I honestly believe that our insurance plan has me flagged as 'Giant Pain in the Ass', so that when I call now, I get transferred straight to a supervisor. I reduced a help desk rep to tears one day with this comment...."So you're telling me, that once a kid with sensory issues turns 7, they're a lost cause? ANY of the professionals and friends in our lives can show concrete evidence that he is NOT a lost cause. How can your company just GIVE UP on a little kid who needs so much help?!" She tried her best, used all of her best 'canned responses', and was just as frustrated with having to defend her company's decision, as I was frustrated that I had to fight for the coverage. She did transfer me to a supervisor, who then set me up with a 'Care Coordinator', and we came to a decent agreement about coverage at that point. If I sat down and tallied all of the hours I've spent on the phone talking to our insurance companies, I can guarantee I've lost more than a year of my life to sitting on hold and/or arguing with a rep or supervisor.
I'm sorry Amy. But also, YAAAAY NOAH!!!! :) I get goosebumps when I hear about such wonderful progress with Occupational Therapy!


I'm really late to the boat, but I don't understand how they can say that it is not evidence-based? There is a trial underway at work right now looking to see if sensory work reduces violent events/positive symptoms in the inpatient, and we are looking at doing more of the same with our anxious kids. A friend of mine who is an OT has written paper after paper on this (do you want some references?)

Damn biomedical people.

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