For those who were not here to follow the saga, I got Frank in to OT at 17 months old. He was in OT for about two years before insurance stopped paying. They said they should never have been paying in the first place, because the SPD was not caused by an accident or catastrophic illness.
I appealed it, but they still denied it, and got all snippy with me: "If you read your benefits booklet, you will see where it says we do not cover this." Yeah, whatever. I have such deeep-seated hatred for everyone who works for health insurance anyway, because of my own medical issues. If I heard that corporate headquarters of my insurance company burned to the ground, I would laugh. Seriously.
I strongly suspect part of the problem here is that SPD is not in the DSM (Diagnostic and Statistical Manual) as a stand-alone diagnosis. It's listed under autism, basically, as a symptom. The DSM is undergoing revision and due to be published with a new edition in 2013, and there is a big push to get SPD in there this time. This would make it MUCH easier to get insurance coverage, among other things.
Anyway, in the fall, I called the Child Development Center at Big Area Hospital. I got an appointment for Frank for late March- six months out. When we brought him for the appointment, the developmental pediatrician spent two hours with him. Her verdict:
1. He has SPD, with severe oral defensiveness. (Duh.)
2. It's affecting his toileting. (Duh.)
3. He has weakness in the muscles around his ankles. This makes going down stairs and riding a bike, among other things, difficult for him. He needs OT for this.
When we heard number three, Darrel and I looked at each other and smiled.
The developmental pediatrician smiled back and told us we were not the first to react that way.
Anyway, Tuesday was our first day back at OT. D, the OT we'd gone to before, was happy to see us back. She spent the session evaluating where Frank was at now with various physical tasks, and agreed with the diagnosis of muscle weakness. She showed me some exercises I could do with Frank at home to help with that. She also had him do some new types of tasks he never did before- he took a ride in a swing that resembled a folded up hammock. It hugs the body snugly while you swing, providing both deep pressure that SPD kids crave and the rocking motion that soothes them as well.
D agreed with my thoughts on Frank's toileting- it started out as a sensory thign, and it's now behavioral. She advised we get rid of all Pull-ups, and force Frank to sit on the toilet and try to poop a couple of times a day, to get him to relax more. She also agreed with the combination of positive and negative reinforcements we've taken to using. "It comes much more slowly for kids with SPD, but it does happen eventually," she assured me.