The new temp speech/feeding therapist came by today. Her background includes having seen a mosaic T18 child before. And she’s experienced with the skills of individuals who have blindness. And sensory processing.
Due to that background, she was able to directly tell us NEW news. Although it’s going to take needing proper therapists to get official evaluations, Aubby most likely needs vision impairment services and resources — which her school dismissed. She is heavily sensory processing conflicted — she’s in the dark and in need of a way to work with it but nobody’s understood her because they blame T18 and her being a vegetable. And the other thing, she doesn’t likely have feeding problems — she has SIGHT and SENSORY problems interfering with being able to eat confidently, without having to check what’s being foisted upon her.
I’m so, so used to fighting for her potential. That Feeding Therapist said she HAS SO MUCH POTENTIAL. Not only that, but that she’s so much more functional than she expected, or that is expected for T18, or expected for those she sees in her work. What she said is that Aubby needs TRANSITIONING. To wean! Transitioning to wean! We just need a non-forced approach in place. She agreed with Growing Independent Eaters program, but also might have a useful enough person that she knows… not even far from where we are. She’s going to talk to them. Our appointments will be to further evaluate, and to transition Aubby in the proper direction.
We have a Ped appointment set up for two weeks from now. I will request an official referral for sensory processing evaluation.
And it may take time to locate or initiate proper services, but she should be weaned. — Particularly since Aubby missed a couple meals enough that she was able to show off for the Feeding Therapist. With rice, even. Other thing is that she is on a waiting list still to schedule an official communication device evaluation, which will most likely take into account vision impairment.
Those three changes, together? (And continued progress with the dietary regimens I’m still working her through, which are beginning to need to match Eo’s?) How much different will life be in a year or two from now? (Rhetorical question.)
That therapist made me cry. So few medical professionals we work with, much less since coming to Tennessee, SEE Aubby how I do. And THIS one may well hold more keys. We shall see.
In any case, we’ve come a long way from hopeless… to such potential.
Public, Not Private School?
The temp Feeding Therapist and temp OT have heavily recommended I at least talk to the potential public school she may be/could have been transitioning to. I will, then, at least talk to them. Apparently what I need is for her IEP to emphasize her health needs.
To do so, the school would have to change their chemicals, or at minimum re-clean everything with her safes. I would understand the refusal not to accommodate her needs in cleaning more than her area, but what’s the point if there’s still going to be chemicals in her environment making her nauseated anyway? I doubt the potential school is up to the challenge, and I’m happy to stay on course to do homeschool, with homebound into it. But I’ll see what the proposed school would accommodate. Because they either need to get on board, or I’m doing things my way.
This is my last chance to get off my strangefangled insistence on homeschool for next school year that anyone in a teaching/therapy position seems to not like. I would seek out play dates and social gatherings for her, she wouldn’t be so isolated as they say. I’ve been in charge of her therapies before, it’s not that ridiculous an idea that I could manage them.
Could they ensure she won’t be fed corn derivatives in a mainstream environment, that they’d actually clean her area as needed, not wear perfume and such around her? Would she be restricted to a small cubicle due to the pandemic? Are they going to insist she wears a mask in spite of her NICU history, which are also not statistically significant to even work? We’ll see how IEP goes.
She’s also blowing away her PT sessions right now. Sight interference, but doing better with what she does. Got her new AFOs.