It is 1:33 am. I am wide awake.
Something new and amazing has been happening for the last several months. Something that I have missed for a very long time. Makenzie has bcome able to fall asleep cuddled up next to mommy on the couch instead of needing complete dark, utter silence, and loud white noise to lull her off to sleep. It is amazing.... I think I said that already.
Tonight Makenzie cuddled up next to me and we both fell asleep on the couch until after midnight. I laid her in bed, started her water, gave meds, and now I am wide awake. It was so worth it!
Life around here has been a bit crazy.
Today was moving day for Makenzie's OT. We said our goodbyes this afternoon which was very hard. I don't think it will fully sink in that she is gone until Monday when she doesn't stroll through our door at 1:45 ish! I am sad but it really isn't goodbye because Stephanie is way more to our family then an OT and we will continue to stay in touch and I can't wait to see Makenzie walk down the aisle as a flower girl in her wedding this March! So see ya later is more fitting! I see much facetime in our future.
This week I also spent a lot of time at the school for meetings on Makenzie's talker,
We met once with Makenzie's private speech therapist and the school therapist to talk about programing, communication strategies, data collection, and goals. We decided to change a few pages from 12 buttons to 20 because Makenzie is doing so well and needed more space for additional vocabulary. We also decided to define some navigation rules and a navigation page to give Makenzie the choice of what page she wants to go back to.
So yesterday I spent a LOT of time with my face buried in Makenzie's talker. Programing, reprogramming, and thinking about the organization of all of the pages through over and over. My head hurt but at the end of the night I had a product that made sense and will be very helpful as more vocabulary gets added to Makenzie's talker.
This afternoon we met again at the school with the Dynavox rep. The talker the District bought for Makenzie was at the school as well. We loaded Makenzie's user area into the talker and the rep went over the ins and outs of how to operate the features of the talker.
This is where I disagree with Dynavox and some of the training they are giving to their reps. Some of the following information will not make sense to those you if you do not have experience with eye gaze access..... sorry..... bear with me.
I have heard over and over from the rep and Dynavox's tech support that the device needs to be re calibrated often. I strongly disagree. The user's eyes need to be re tracked often but the camera itself does not need to be re calibrated unless the eyes are tracked, the camera is reading them, and the talker is not responding appropriately. Then and only then does the calibration need to be addressed.
The other idea I disagree with is that the calibration number does not matter. After much experimentation and experience I can tell you it very much DOES matter. If the calibration is not good the device can be accessed but may not be choosing what the user is actually looking at. I tried using one of Makenzie's bad calibrations and after about 3 minutes of looking at one thing and the talker selecting something different I had to stop because I got so frustrated. Then recently I accessed Makenzie's talker with her good calibration it was a night and day experience. Even though it was not set to my eyes I could pick what I was looking at very easily.
Now that the school has their own talker that Makenzie will be using all of this information has become very important. I have tried to my best explain why I want Makenzie's settings on her talker at school to remain unchanged.
It seems though that this request has been met with a some what defencive mood. This afternoon a very frustrated therapist told me I needed to understand that they will be addressing her settings at school if needed.
The issue I have with this is that if they go with the "camera needs to be re calibrated often" theory Makenzie is going to be subjected to much undue frustration with the calibration process as there is nothing quick nor easy about achieving a functional calibration with Makenzie. It took Makenzie and I almost 2 hours.
If they go with the "calibration numbers do not really matter" theory. Makenzie will not have appropriate access to the talker which will set her back very quickly.
Their talker or not, Makenzie is my daughter. This is not a fight. This is not about control. It is about a mom wanting the best for her kid. In order to achieve that I have spent a lot of time learning how to support Makenzie on her Eyemax. I have served the school a talker, which has near perfect settings, on a silver platter. What I don't understand is why they are so intent on fixing what is not broken and if it does become broken why they have such an issue with me being in charge of fixing it. I have proved to them over and over that I know how to do just that. I also know Makenzie best.
This school has a mom who is willing and able to help. Instead of saying thank you, they would rather do it themselves. I don't get it. I will be checking in on the settings frequently. At this point there is nothing more I can do.
All in all it is coming together. Makenzie now has a talker, a wheelchair mount is in process, and the school staff is getting some good training. I am happy with the progress. Makenzie could not have better support from the school SLP and the special ed team.
I am also very proud of myself (yes I am tooting my own horn) for educating myself on the IEP process and Makenzie's rights and then being able to use that information to see this to the end for my girl! There are so many things in Makenzie's life that I can't fix but it is oh so rewarding when there are things that I can!
I can't wait to see Makenzie grow and learn! Pretty wonderful stuff if I do say so myself!
Believe... Prayer Works!
Wednesday, November 23, 2011
It is 1:33 am. I am wide awake.