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Tuesday, April 3, 2012

Sometimes you just gotta beg

Yep. Sometimes you just gotta beg. We did, and this time it worked. We had a little panic attack at OT last Thursday when we found out that the authorization for Raya's 2nd hour per week of OT ended on Friday. I thought that the phone call I had made earlier in the month had taken care of it and that it had been extended. I called her support coordinator while we were at therapy on Thursday to find out what we needed to do and she said that not only would we need to justify keeping the 2nd hour per week of OT, but we would also need to justify/prove why it's necessary for Raya to get OT at the clinic instead of at home. Maybe it was because of all the other craziness that was going on for us last week or maybe it was just because I've learned not to give up without a fight when it comes to anything special needs-related, but hearing that totally didn't stress me out. I hung up the phone and her therapist and I looked at each other as if to say, "Bring it on. We're ready."

Over the weekend, Raya's OT drafted a magnificent letter explaining why we need to keep 2 hours of therapy and why it needs to be done in-clinic instead of at home. (Just to clarify, Raya's support coordinator is a wonderful lady and I have no problems with her at all, she just was in a position of needing to have documented justification for the services we were asking for.) The letter was perfect. I feel bad that she spent 4 hours of her weekend working on it but she did a fabulous job explaining things. For example, (and I'm paraphrasing) she explained that 2 of the body's primary regulators for the central nervous system (CNS) are sleep and nutrition. When those needs are not being adequately met on a consistent basis, the body is unable to respond appropriately to other needs. Raya has disruptions in both of those processes and the sensory protocols we have put into place for her have assisted in organizing her CNS which allows her to be more fully present in age-appropriate functional tasks in all areas of function and development. Not to mention the positive effect that OT has on helping her to tolerate her other therapies.
Wild & crazy on the scooter board :)
Having 2 sessions per week of any type of therapy is obviously going to be more beneficial than 1 when it comes to a child with developmental delays of any kind. In our case, the argument is that OT twice a week gives us more opportunity to have the therapist going through these protocols that have helped her so much instead of just my well-intentioned but often sloppy attempts to do them at home. Ideally we would be doing the sensory protocol (brushing, joint compressions, rocking, heavy work) 3 times a day in a dark, quiet room. Realistically, I'm doing great if I get it done twice with minimal screaming and loud laughter coming from the living room in a semi-dim room with relaxing music playing and in the evening it usually gets cut short when I have to put her in bed to go get after the big kids for not doing what they're supposed to be doing. She most definitely does NOT get the same benefit from me that she does from her therapist, and seeing her twice a week means that we actually make forward progress rather than just trying to maintain current levels.

Our support coordinator came to Raya's OT appointment today and as soon as we got there and walked in, I knew we weren't going to have any problems getting the approval we needed for the second hour. The challenge came in giving her enough evidence that in-clinic therapy was absolutely necessary since the state wants all the early intervention therapies to be done at home now. We explained all the reasons we could think of and I think between the two of us, we had every possible thing covered. Including the part where the therapist listed off all the equipment that would need to be provided to us if we were forced to do home therapy. :) Again though, all we had to do was go through the things we normally do during her OT sessions in the little itty bitty, dark, quiet room with the cuddle swing hanging from the ceiling and it was pretty clear that there's no way I can duplicate that environment at my house.
Nope, can't do this at home! (And Miss Elizabeth, can you believe she's actually IN that swing and SMILING!?!)
Not only that, but our current therapist, whom Raya has fallen deeply in love with, doesn't currently do home therapy. That would mean that we'd have to start all over from scratch and that's only IF there are any OTs contracted with DDD in the area that even HAVE availability for home therapy. There weren't 14 months ago when we started OT and that's why we ended up with in-clinic OT to begin with.
When all was said and done, our support coordinator pulled out the paperwork and had me sign it and said the auth would be extended for another 3 months and not to worry about the in-clinic vs. home therapy issue. Like I said, for whatever reason I really hadn't been stressed about it being approved. We've had bigger fish to fry around here this week and I knew we had a really strong case for it so thankfully it went our way.

When I had pulled into the parking lot, the support coordinator pulled in right next to me and the first thing she said to me when she got out of her car was, "Wow, you drive a long way just to get to therapy!" I told her that we love it there and it's totally worth the drive. Then during the session I made the point to her that for the past 14 months, I've been driving 25 minutes each way for therapy and now we're doing it twice a week because we love it there and it's by choice (well, except for the part where they were the only ones with availability when we needed therapy but that's beside the point). As the therapist was walking us out, she said, "This is a great facility!" and then when we got to the parking lot she said, "I can totally understand now why you're willing to drive all this way to get to therapy. This is a great clinic. I wish I had brought some of my coworkers with me so they could have seen it."
Score one for Mommy & another fabulous OT. :)

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