Maria Rose

Well it looks like we are going with the Tech/Talk after all. Maria’s speech therapist agrees even though many of the reasons they are against the VMax are just not valid. For example they say that since the VMax is more complicated than if the buttons are programmed to do complex things like change the menu it will confuse Maria. Yeah so don’t program the buttons to do that – duh! There were a handful of valid objections such as how heavy it is and the glare off the screen, but I feel the benefits greatly outweigh the problems. In hindsight it’s obvious the augcom people weren’t actually listening to us. They came and evaluated Maria and made their decision without our input making any impact. Even after they had decided and we clearly didn’t agree they tried to convince us they were right rather than taking our experience with Maria into account.

The Tech/Talk is a good device and will help her but it’s not as versatile as the VMax. The VMax can be made simple but the Tech/Talk can’t be made complex so it seems silly to go for the simple device when everyone agrees she will be ready for the VMax in a year or two. Mostly I’m annoyed because I feel like we are being steamrollered into this without consideration of our 4 1/2 years of experience with Maria, her sensory deficits and her ability to communicate. Heck, even the VMax rep wasn’t pushing the VMax.

Maria continues to show more interest in crawling. I’ve seen her get on elbows and knees and rock back and forth, a classic sign of a kid ready to crawl. She pulls herself along the rug or rolls over to get to things. The best thing we can do is leave her alone rather than rushing over to help her. She’s figuring it out. Her interest in crawling makes us feel better about the fact she still isn’t standing or walking much. That’s normal for kids with multiple disabilities. They progress in one area then fall back while another area improves.

In that vein we’ve been talking about how she’s reverted to bottle drinking. None of us have tried the straw since before Thanksgiving because of the respiratory problems she’s been having and now we’ve all just gotten lazy about it. So we’ve gone back to offering her the straw at least once a day and preferably every time she gets milk. For the first couple of days she would just suck it up and spit it out – really annoying. However lately she seems to be starting to get it again.

Her audiology exam went really well. They rated her at about 30 decibels and normal conversation is at 20 so that qualifies as mild hearing loss which is much better than the severe to profound they were saying before. She was also really tired since it was 4 pm and she hadn’t napped all day, just dozed a little, so we were afraid she was going to do really poorly. The audiologist suggested using an FM device in school. The teacher gets a little wireless microphone that clips to her shirt and she speaks as normal. The kid usually has headphones but that wouldn’t work for Maria so she’d use a little speaker placed nearby. It amplifies the teacher’s voice a little and the purpose is partially to improve her ability to hear it but also to focus her attention on the important sound.

She has no big appointments for the next couple of weeks so things can settle back to routine for a while.

Not sure what caused that little cluster of seizures last week but it was only for that one day. Over the weekend she was very quiet and low key but had no more seizures.

Monday the augcom people came back. Maria was in a really good mood so they were able to work with her for a long time before she got tired. They started with the VMax and Maria figured it out very quickly. She was looking at it and hitting buttons consistently and generally performed very well. However it’s a complicated device that they obviously didn’t know how to program correctly so it occasionally did things it wasn’t supposed to which confused her.

Then they took out another device, I forget the name, and Maria was completely disinterested. Finally they took out the Tech/Talk and she liked that one too. However they changed the test which, as far as Cathy and I are concerned, invalidates the whole thing. With the VMax she was asking for a toy and with the Tech/Talk she was asking for pudding. They said she responded better to the Tech/Talk while we think she just responded better to pudding as a motivator. Plus they talked about how confused she was by some of the VMax stuff, but that’s their fault for not knowing how to operate it.

Their position was that we go for the Tech/Talk now and Maria can grow into the VMax in three years when she’s entitled to another device. We say give her the VMax now – why buy two devices when the state can buy one? Besides, with the mess the Arizona budget is in, who know if there will even be a program for disabled kids in three years?

We know Maria. The augcom people know the equipment. Wouldn’t it be nice if someone know both? Well her current speech therapist does and she feels after months of working with Maria and extensive experience with the VMax that it would be best for her so we are certainly inclined to agree with her.

Cathy called the VMax manufacturers and they put her onto the local representative who is coming out to the house later today. She is going to work with Maria and the device and see if we can address some of the concerns the augcom provider has about its suitability for Maria. To be fair, the augcom people don’t care which device she gets. They just don’t feel they can justify the cost to the state and we are trying to get more ammunition for them. We don’t expect to have as much trouble as we did with the walker and stander – apparently the state is notorious for denying walkers and standers but not for augcom devices.

Maria’s been acting like she might want to start crawling. She’s gotten up on all fours a couple of times on her own and rocked back and forth. She also is starting to sit on the floor unassisted for a few minutes at a time. She’ll be completely hunched over, but she doesn’t flop over to her side. Still no interest in walking or standing though.

Other than that, things have been pretty routine. Maria has an audiology appointment this afternoon. She hasn’t seen a Phoenix audiologist in a long time so Cathy made this appointment and that’s convenient because the school needs a recent hearing test anyhow. We’ve also been trying to get her in for her annual neurosurgeon appointment but that’s been a bit of a trial since we have to schedule an MRI before the appointment and nobody talks to anybody or listens to messages but I think we got that worked out. She has a swallow study and her kindergarten transition meeting scheduled for March. I think that’s all the appointments in the near future other than the usual crowd of weekly therapies. She has quite the complicated social schedule.