I don't usually discuss my extended family on my blog, because they don't know about my blog and I feel it is a breech of their privacies to talk about them without their knowledge, but I am making one tiny exception. My mother is strongly opposed to our putting KayTar into the district for assistance. She believes KayTar doesn't need the help and will catch up on her own by Kindergarten. She feels that they will label her and no teacher will ever give her a chance to succeed on her own again. She will be dismissed as soon as the teachers see her file. That is really just scratching the surface of her feelings on the issue, but I won't go any deeper. I've tried explaining that not helping KayTar now, before she gets into school, is setting her up for future failures in the classroom. That if we don't help close her gaps now, she will be at a disadvantage when she starts Kindergarten. But she still disagrees, public school is the enemy. It is not to be trusted.
I've been very apprehensive about this entire process. I've heard from so many people that I have to be prepared to fight for services. That districts are stingy with services and it will be difficult to get KayTar the help she needs. That the district is the enemy until proven otherwise. And every experience I have had interacting with the district has been in opposition to these views. I'm not wholly letting my guard down, but each meeting had been reassuring and helpful. I don't feel like I am in a battle, I feel like I am part of a team. They have explained the process, taken time to listen to KayTar's developmental and medical needs, to ask questions, to show me around, to help me make sure my ducks are in a row. Everyone I have had the pleasure of meeting has been caring and warm, truly interested in KayTar and her needs.
Yesterday, the woman who was helping me with paperwork asked me to give her another quick review of KayTar. I got to the speech issues and said, "Since getting her hearing aid, her speech has really taken off. But a big portion of it is mimicry and repeating things she's heard before in such a way that---" And the woman interrupted me, "It makes it seem like she speaks normally and understands more than she really does?" It was such a pleasant surprise to have my sentence finished, I said, "Yes, that is it exactly." Later in our conversation she said, "I don't think I formally introduced myself. I am the speech language pathologist." And then it made sense. But I felt so good about the fact that this woman would be the one evaluating KayTar's speech, someone who understood the nuances of her backwards means of language development. Someone who won't be fooled by KayTar's fancy-pants mimicking.
I brought home a pretty hefty questionnaire yesterday and filled it out. KayTar looks really difficult on paper, you know.
Under medical care for:
Unilateral hearing loss
To be conversational and have a good understanding of language
To be able to function in a classroom
To have appropriate peer interactions
And so on for 8 pages.
But in person, she isn't really that person. Well, she is, obviously, but what I mean is, so much of that just is not evident. The episodes still happen as they will, but on a normal day, there is not hint of them. Her delays are becoming less and less obvious, though still there. Her physical delays are probably most striking, because she can't run and jump and climb like other kids her age. She has trouble walking on grass (although she is beginning to do better!) and on inclines. She falls more than other kids, too. She wears a hearing aid. Her lesions are internal, of course. The eye deviations happen fairly often. It has been months since the drop attacks happened last. Her feeding issues are a non-issue unless we're sitting down to eat with someone. The light sensitivity can be very obvious when she's in the throes of it, but recently, we have had good days. The constipation is largely controlled with medication. Looking at her, you don't see the laundry list of issues, but they are there nonetheless. And filling out the paperwork is always a trip. I think she'll end up with a 5 day, self-contained classroom placement, just because of her propensity to have a medical need during school hours. I don't think they'll put her in the combination classroom because the ratio is higher and they are less prepared to deal with the situation if something does occur. We will see, though.
Yesterday I was able to see the testing classroom. It was delightful. The walls were covered in familiar characters and preschool-friendly decor. The centers were filled with toys that KayTar would go nuts for. I saw many, many familiar toys from both our home and the therapy center. It looked perfect, like KayTar would be excited to come play and do well in the "testing" atmosphere. All in all, I left feeling even better than I previously had. Each encounter just assuages my fears just a bit more. I know that there is still a possibility I will need to put up a fight to get her services, but more and more, I feel like we are just joining a new team that will be just as beneficial as our ECI therapy team has been. I'm excited to see what a classroom experience will do for her. I'm starting to believe that this could be a very, very good thing for our little KayTar.