Thursday, February 08, 2007

Yelena's Amazing Therapeutic Adventures

This is the time of year I usually slip off to California for a week since, as you can surmise from the post below, I begin to go a little stir crazy. My blood just isn't made for this unrelenting single degree torment. Even though I will eventually need a vacation or I will be checked into a sanitorium, Yelena and I need to stick around Chicago for the next few months and keep up a steady routine of therapy. OT seems to be going really well and her therapist told me she has made tremendous strides since her evaluation, which was about 6 weeks ago. PT progress steadily (slow for the average baby, but big leaps for her). She has sat up entirely on her own on the right side with verbal cueing, which is a huge milestone. Her cross-reaching is fabulous and she is actually trying to transit down. Some days she can stay on her hands and knees for a bit and do some assisted crawling, and even a tiny bit on her own, other days it seems more difficult. She is pivoting on her tushie quite willfully and is doing some butt-scooting, which is a mixed bag. It's good that she is learning that she can self-locomote, but Evette really wants her to be able to crawl. ST is still nebulous. Yelena will chat the whole drive over there and in the waiting room but, as soon as she sees Shannon, does not make a peep until we're back in the car. She talks during PT and OT, so the irony is thick. Even silently, she is working on receptive language so it's not a complete loss and she is responding well to the nuk brush and chewy tube.
We're doing OT, PT and ST through Children's Memorial, with all the therapists certified though Early Intervention, so we can continue to see them once the EI stuff is all sorted out. It's a damned good thing we didn't wait for EI to set everything up since, after calling the first week of December, we finally had the at home evaluation a couple weeks ago and the Developmental Therapist isn't even coming for her first meeting until next Tuesday. EI once was a free program but, now that our tax dollars are being diverted elsewhere (ahem), it's income based and we have to pay the maximum amount, which is $200. They first bill our insurance and EI covers everything else. If we were only doing one therapy, it wouldn't be worth it, but our share of 3-4 therapies is much higher than $200, so it's a good deal. Plus, the coordinator told us, EI typically doesn't start billing for a few months.
The EI home evalution was awful and I couldn't bring myself to re-live it by reporting about it any sooner. Yelena did fine -- as fine as you can with 4 therapists and a social worker watching your every move -- but I didn't. After all the evaluations at Children's and the neurologist and the pediatrician, I had just hit the point where I could not deal with one more person telling me what's wrong with my daughter. And then I had to deal with the annoying developmental therapist, who will not be Yelena's DT, with her cat allergies and generic Tiffany heart bracelet, "Well, she'll be getting cognitive work through the occupational and speech therapy, so you probably don't want to do developmental, too."
"Do you think developmental will help?"
"Well, you're already taking her to so much."
"Yes, but will it help?"
"I'm not sure you want to take her to another thing."
"Please answer yes or no, do you think will she benefit from developmental therapy?"
"Yes, but..."
"Then we're doing it." The neurologist said specifically that he wants her receive DT. It was like this woman had decided I was the kind of mother who didn't want to go to any more trouble than necessary. As if we weren't going to do everything in our power to help our child. Bitch. It's one thing to have these evaluations in a clinical setting, but having them in your home with strangers looking over your DVDs and obsessing over the cat hairs woven into the rumpus room sofa is too invasive.
Thankfully, all that is over. Yelena's OT said that listening to these people talk about x percentage and y percentage delay will just make you crazy and take the focus off what matters, and that's the day to day progress. And Yelena is the hardest working baby I know. It's very difficult to see kids in Yelena's music class or wherever to go from wobbily standing to fully walking in a few weeks without even a thought, while she tries so hard and is barely moving. And I see the looks on parents' faces when they look at Yelena like she is deficient. Even if they try to hide it behind kindness (and not all of them do, mind you), I see the pity, the judgment, the smug satisfaction that their kid is normal, or just relief that their child doesn't have special needs. (Years of acting training has made me pretty proficient in reading faces, so don't even try to convince I'm imagining it.) It hurts that none of them want to have Yelena join their children's playgroups, as if her brain disorder were contagious.
This may suck, but Yelena is still the sweetest, loveliest and most fascinating little person I've ever met. It's going to take a while, maybe years, but I am convinced she will catch up to all these annoying statistics and leave them in the dust.



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