Well I spent this weekend trying not to catch the stomach bug Makenzie came down with just as her cold was clearing up. On Sunday I was finally able to get her stomach to tolerate a bit of food, she had more giggles, and her smile greeted me with ease instead of forced hesitation.
Yesterday morning when Morgan came, the first thing he did was throw up. Crap! Makenzie is such a good little sharer!
I am so sick of sick.
However, for today everyone seemed to be well and that was nice for a change.
I have not posted about school for a while because it is really going very well. I LOVE the school from the administration all the way down.
There has however been one thorn in my side and it is still brewing....... the talker, and everything that goes along with it.
Before I begin I want to start with a disclaimer....... The rest of this post is not about the people involved in Makenzie's education. Each and every one of them is working very hard on Makenzie's behalf. Instead this is about a system that can be very slow and sometimes incredibly broken.
When we moved I contacted the school in the beginning of August. At that time I knew that Makenzie would be getting an eye gaze communication system. No one was sure exactly when because of the insurance process. We did several evaluations so that the school could make their recommendations and at the end everyone agreed Makenzie needed the eye gaze technology.
We had many discussions about the school providing a talker for Makenzie to use before we found out that Makenzie's personal talker would be arrive way sooner then anyone expected. I agreed to allow Makenzie's talker to be used at school but asked the school to provide a proper mount and charger to be used at school. This is where things started to get a bit messy.
In order for Makenzie to access her talker she must be positioned very well. After that is accomplished the talker has to be placed 22 inches away from her face and the proper angle must be acquired by tracking her eyes in the little box on her talker. If you missed the post on how much fun doing this
is is not you can find it here.
The AT team at the school recommended a rolling mount. I expressed my grave concern over this idea for several reasons many times before the mount was ordered. A few of my concerns included the amount of time that would be spent re tracking Makenzie's eyes each and every time Makenzie or the talker moved. I also expressed concern over the frustration this would cause Makenzie, the amount of time it would take away from Makenzie's education and I also had secondary concerns about the logistics of transporting the talker and mount separate from Makenzie's wheelchair.
We then had an IEP meeting where I expressed these concerns AGAIN.
My concerns however seemed to fall on deaf ears over and over again and a rolling mount was ordered anyways. So at the IEP meeting I agreed to allow the school to conduct a trial period with the rolling mount because I felt that until I conceded to that plan we were going to be at a stand still on the mounting issue. I was willing to give it a go but not until after I made it very clear that I knew it was not going to work and I felt like precious time was being wasted. I want to be able to compromise and was willing to do so until yesterday.
Yesterday I was unable to stay to help set the talker up in the classroom. So for the first time the school was going to h ave to set up the talker solo. I headed home to put a sick baby down for a nap and within 20 minutes I received a call from the therapist tell me that they had called Dynavox two times but were still having a hard time tracking the talker to Makenzie's eyes. She was convinced that the talker needed to be re calibrated because Dynavox's tech support told her so during one of the calls to them but after talking her through a few things I was able to explain that the problems they were having was not calibration issues but instead Makenzie's position in relation to the talker. It was in that moment I realized there was no more room for compromise.
Today we met with the AT team. The meeting was scheduled at the IEP meeting in order to set up the rolling mount to begin the "trial". I went in planning to make myself heard in a way that could not be ignored any longer. Before we started I told the team that there was going to be no rolling mount trial. Instead a mount needed to be acquired that would attach to the hi-low chair so that Makenzie could have adequate access to her voice (talker) and that this request was not negotiable.... period. I think I was heard this time...... loud and clear.
In order to change the IEP to reflect the change in mounting we get to have another IEP meeting on Thursday. Please pray that Makenzie's team can understand what Makenzie needs and why. Pray that they will respect my knowledge of Makenzie, her eye gaze system and what is needed to allow Makenzie to access it correctly and with ease. Pray that Makenzie will be able to have what she needs SOON because this is what we are fighting for................................
This is a picture that was taken of Makenzie reading her letter of the week book to her friends after they had read their book to her! AMAZING!!!!