Parents As Paid Providers Actually Getting The Job Done, Another Open Letter To Governor Hobbs and the Arizona State Legislature

Me, 26 days after my cervical corpectomy this January, and me this morning. The scar has healed so nicely, you can barely tell I had this surgery by looking at me. Reading my writing though? Lol, that is an entirely different story…

I spent months not writing here and we’re already back for my second post this week. Which, to be honest, I had planned on deferring until next week… until I woke up this morning and glanced at last night’s post and realized I put “diaper training” for potty training in multiple places 🥴 Tony has been out of diapers since a couple weeks before the comment I described was made by his former PT about them never thinking they’d see the day he was potty trained (which I mentioned in last night’s post, with our son being I think around 4 and a half at that time), and I did update the post.

In my defense, I am just barely less than 10 months post cervical corpectomy (a surgery where they removed part of one of my vertebrae to remove a disk that has fallen behind it and was compressing my spinal cord). I had a very active day yesterday doing things like pushing my son around on one of these:

Probably not surgeon approved given his weight/size, but his motor planning difficulties are severe enough it will take him probably more than a year to be able to ride this by himself. Right now we are working on the balance part as kiddos with Sotos have core muscle deficits. On any given day right now I can be in enough pain by the evening that my proof reading (if not my grammar) will just be busted. And to be perfectly honest, I was in enough pain last night when I was typing that out around 8:30 pm that it all made perfect sense at the time. I went back to work 4 weeks after the surgery I mentioned.

And, unfortunately that’s assuming my ongoing surgery recovery would be the only reason for misplacing my words. If it’s a bad day for my postural orthostatic tachycardia syndrome, all bets are off. I have been having problems for months with that now because of the current Mast Cells Activation flare up, and as embarrassing as it is, that does make the grammar even sketchier as I work through brain fogs.

Someone with the activity level of a one-to-one aide should take 8-12 weeks off for a cervical corpectomy based on the standards of care, but I didn’t want to keep him out of school for that long. He’s still not generalizing cooperation to safety instructions at a high enough level with people he doesn’t know well for us to send him in with another aide for an entire day much less one to two months. Which brings me to my next point. I would *love* to have someone other than me doing his hab therapy.

Last person we hired to do hab spent three months training with me and still couldn’t perform any of the tasks with Tony independently. Meaning I was demonstrating every therapy task and performing every therapy task while this person got paid and I didn’t. I reported this to our DDD support services coordinator and that individual quit a few days later. This was while I was still undergoing diagnostic procedures for my spinal cord compression. The person before that needed regular prompting to do tasks with him because she would sit and play games on her phone.  So I would argue that the parents who are serving as paid providers aren’t taking advantage of the system, they are improving outcomes by ensuring the work on these goals actually gets done.

To be clear, when the fabulous Miss Whitney did hab she rocked it, same for Miss Emily. Miss Whitney, as some of you may remember, moved out of state when Tony was 6 and passed away a couple of years ago. Emily has moved on to higher paying opportunities, the economy being what it is. But only 50% of the individuals we have found outside of me to do hab with our son have actually done the job the way it was supposed to be done. Far too many people when they interview and hear about our son’s level of need decline the job, and that’s even with the high level of support I provide to any therapist working with him.

And I would definitely prefer to have someone else do these therapy tasks with him, as it would help build his capacity to work just as successfully with others. As I have been recovering from my surgery, I have worked very few of his hab hours to support my recovery while focusing my available energy on his schooling, which is too big to fail in my opinion. It’s not optimal, we just don’t have anyone but me doing this for him right now and even me filling five hours a week or less is still providing more benefit than someone playing on their phone. His hab goals  definitely matter to the kinds of outcomes the has, and we hope to see as much preserved of what is medically necessary for him and all kiddos like him.

The goals we have advanced these past 10 months have been the ones I prioritized as related to safety or recreational skills. His latest success is staying in the house for 2 hours and 40 minutes with the front door open without eloping while we worked on other hab tasks and goals at the same time. This matters for helping him succeed in school or other areas of the community with another aide that isn’t me. We have to build and teach his impulse control and risk assessment bit by bit. We’re basically training a kiddo who originally had none of either to develop enough to function in certain capacities. A year ago he was only doing 16 piece jigsaw puzzles. Now he can do 60 pieces. That promotes both executive functioning and his ability to do some sort of functional play as he still isn’t interested in pretending.

I reiterate that these programs can maximize potential and reduce costs, whether what happens is described using proper English or not. And that sometimes, the parents actually are producing better outcomes than some of the hab therapists they’ve been able to find to work with their children, which actually does optimize the money DDD is spending for these therapy types. And that is something I hope all sides of the political spectrum can come together to support.