School is over for the year! As crazy as it has been having so many different people come to the house every week, I think she’s had a really great year. She only got sick a couple of times, and she really enjoyed having so many people to interact with.
She discovered several new interests. Drawing with markers. Pasting.
Sometimes she’d even get interested enough to bring one of her hands to midline, something she finds really difficult.
Toward the end of the year, instead of laying on her stomach on the ball and trying to lift her head up, she decided she’d rather try to stand up. This is new. Prior to this she’s always been a bit of a noodle leg rather than wanting to put any weight on her feet — she’s even an expert at worming her feet out of the straps on her stander so she’s not actually standing on anything.
She was also making some progress with her head, doing better at relaxing and trying to use her muscles when we tried sitting at her bench or sitting her in someone’s lap.
She was getting much better at isolating her wrist and hand to use them to touch things rather than needing to swing her entire arm. Which is not to say she didn’t enjoy swinging her entire arm to knock things down. She was quite pleased with herself after she knocked over this cup of dirt when everyone turned away for just a few seconds. Notice the white container, which is covering the dirt still left on her tray.
In May, she made several visits to school, so people could meet her and she could have at least a bit of an introduction to the place where she’s going to go next year. She got to try out some new equipment, she met a few kids, and she generally had a very nice time.
Her work with switches was rather haphazard this year, as we tried to figure out which switch types were going to work best for her, and also because not all of the therapists had the proper training to know how to actually use the switches. (Technology literacy lags behind in many places…) This will be addressed next year with a more consistent program after Atech has finished all their evaluating. But it’s pretty clear that she can activate a switch and that she does understand that sometimes pressing the switch can cause something else to happen. She had a switch connected to a little fan and it didn’t take her long to figure out how that worked. Whether or not she’s going to be able to isolate more than one switch in a field the size of her tray and understand that they can do different things is a bigger question which we haven’t yet answered.
I know some of the people who read this are probably interested — it’s very interesting (to me anyway, and I can’t be the only one) to compare services across areas and see what other people are getting from their school systems.
So after much discussion, we’ve decided to go ahead with trying to get Dorrie to school next fall. She’ll attend the special needs preschool four afternoons a week (2.5h/day) with transportation to and from the school. She’ll have a paraprofessional 10h/week (ie, all class time) and a nurse 14h/week (all class time and on the bus). The rest of her services she’s pretty much keeping the same, with some slight alterations – OT 1h/week, PT 1h/week, Vision 90m/week, Speech 1h/week. Units for the special ed teacher fill out the remaining hours. The teacher of the deaf teaches a hearing impaired classroom at the time Dorrie’ll be in school, so we’re going to try just having her in for consult (30m/week) and see how that goes.
Her goals are pretty ambitious, so we’ll see how they go. She has shown some improvement over the school year, though not as much physically as I would have hoped. I’m really hopeful that her immune system will be up to the challenge of being exposed to so many kids, but we’ll have to see how it goes — I do think that being in school will be a really good step for her, and I want her to have that experience, just not at the expense of her health.
After our Easter postponement and then mother’s day, we waited a few weeks before trying to ‘reschedule’ Easter. In the end we decided to do it the same day as Father’s day, though as out of it as we all are, we didn’t realize it right away.
So we made reservations at the same place as before. And then, on Thursday… Dorrie started acting like she had a cold.
I swear, this place is cursed.
But fortunately for everyone, it was a very weak though insanely contagious cold. Everyone who caught it felt better in about 48 hours or less. Unfortunately, in addition to Dorrie, she managed to spread it to mom, dad, grammy and one of her nurses. So even though mom wasn’t feeling great on Sunday, we all still decided to keep the date.
The restaurant was nice, and the food was quite good. Though Dorrie decided she didn’t really care to be there and spent the entire meal in mom’s lap. Which meant that it took mom about 10x as long as everyone else to eat, and grammy got a chance to cut up some meat for the first time in many years.
After we ate, we headed over to Uncle Jonathan’s place which, even though he moved in there about 3 years ago, none of us (meaning me, Bob or Dorrie) had ever seen. It was very nice. Though Dorrie found it not interesting enough to stay awake for. (And neither did daddy.)
On the way home we finally managed to locate the mythical Sonic. (You have no idea how many times we’ve tried to find this when we were in the area. It’s fairly pathetic.)
We have been meaning for a while to pay a visit to a developmental pediatrician at DHMC. One of our goals has been to get a list of diagnoses for Dorrie, and to make it good and official, in case we are called upon to justify all of the services we are receiving. So that is exactly what we came away with — based on his observations of Dorrie and our discussion of what she is like and what she is capable of, we now have a laundry list of all of her medical and developmental issues, in big bold letters with a board-certified neurodevelopmental disabilaties specialist’s name at the top. He also pointed us to a specialist we can talk with about Dorrie’s physical development, and revisit the matter of AFO’s for Dorrie (which most of her team still feel she would benefit from).
I mentioned a while ago that I had asked Dorrie’s PT for suggestions of equipment that might not have any theraputic benefit, but which would be fun for her to play on. Eventually, after looking through a bunch of special needs catalogs, we both thought that the Tumbleforms JettMobile might be something Dorrie could use.
So we asked Dorrie’s DME vendor if they could bring one over so we could try it out. They cost about $600 so we certainly didn’t want to order one without seeing how she looked on it. They weren’t sure they could, but our sales rep managed to wrangle one for a couple of days from a teacher she knows, and brought over so we could have a look.
Dorrie thought it was pretty cool, and more importantly, in spite of the awkward looking setup, it looks to us like she really will be able to use it to push around on the floor and be more mobile than she has been pushing herself around on her back. It will hopefully also spare her poor ear, which tends to look pretty red after a day of sliding around on it.
So the next step was to contact our area agency (an organization that provides support services for people with special needs and their families. I believe at least partially funded by state money but I’m not entirely sure how that works) and see if they had any funding we could access to help pay for it. Normally we’d go through Dorrie’s insurance for this, but she already has a mobility device (her chair) and everyone was in agreement that they wouldn’t authorize it. Since we’re going to need another chair within the next year or two, we didn’t want to risk jeopardizing the future funding for that. In any case, we submitted our quick application and a couple of weeks later they came back and said they would cover part! (Now we might be able to afford a swing, too!) So we went ahead and ordered… haven’t heard yet when it’s expected in, but we’re all very excited.
Back in February, we began attempting to make an appointment for Dorrie to have an adaptive communication evaluation with the state agency that’s supposed to assist the schools with equipment. There was a lot of bureaucratic red tape, of course, and we were told at the time that the waiting list to get the eval was 3-4 months long.
We were not best pleased, but we sent in the forms we were supposed to fill out and assumed they’d eventually get back to us with a date. Things were busy and time passed and suddenly we realized it had been 3 months and we’d heard nothing from them. So first our SLP from the school called, and by her reports they were very unhelpful until she called a second time and was more aggressive. They began giving her some song and dance about a missing form.
So we called to demand an explanation — were we supposed to psychically know there was a form missing? — and got a different story. Apparently our info had been passed to the billing department, where the billing department determined that our primary insurance would not pay for the eval, and that medicaid needed a form signed by our doctor before they would do so. And then… they did nothing at all. Because apparently our doctor is psychic too!
They at least admitted it was all their fault, though I wonder if they would have been so up front with this had the involved billing person not left for another job in the interim.
So things finally got moving again and after some scheduling confusing we finally got an appointment for an OT evaluation on June 1st. Apparently this was a required preliminary to the actual communication evaluation, which we weren’t aware of, but whatever. Additional information is always good.
The woman who came out was very nice and brought an iPad for Dorrie to play with, as well as a few switches. She also made use of the switches we already had here from the school. Dorrie was in a good mood (surprisingly — at the same time and not two feet away, workmen were busy demolishing our kitchen so we could get new cabinets.) and very agreeable to playing with the different apps and switches. She did a surprisingly great job at using her fingers as fingers and not as a big unit to hit things.
We’re supposed to get the results of this eval as a report and they’ll call us to make an appointment for the second eval with the speech therapist.