It has been a hot minute since I have posted an Ella update. I have been getting a lot of questions about the latest round of IEP meetings so I wanted to take the time to answer them.

Where to even begin? Our May 7th meeting was specifically called to address three concerns. Our first concern was regarding nursing at school. Due to the unknown timing and nature of Ella’s episodes we were requesting a nurse be with our girl at school all day long. Often times we get calls telling us that the nurse checked Ella after her episodes, but rarely was she there to witness them. The staff is very good at reporting what they witnessed but they are not medical professionals.

After initiating this request, we learned that Ella did not always have an aide present with her. Despite it being written on her IEP, when she went to therapies the provider became the aide and the aide went back to the classroom. She was on call as needed but not always with her. Apparently this is a “policy” at the school she is attending. The funny thing about policies at Ella’s school is that they can rarely provide us anything in writing to back them up. This was one of those times.

Under this same request, we were asking for a nurse to be transported on the bus with her. The ride is thirty five minutes long and god forbid she had an episode on the bus. We wanted to make sure someone was on the bus who could tend to her immediately. If she needed to be removed from her seat, she could be, and receiving care while the driver or aide radioed for help. While she does have an aide on the bus, she is not CPR certified and at minimum that is what was requested by her team at Boston Children’s Hospital.

Due to the fact that Ella’s episodes have yet to be medically documented as seizures, an in school nurse was denied. With safety always being at the forefront of our minds, we were able to get an aide with her ALL day. She was hurt twice at school during/after an episode so this request was one that was easily granted. It was also decided that Ella should have a nurse on the bus with her. Until they can find one, we will be bringing Ella to and from school.

At this meeting we also discussed a one month trial for a Tobii communication device. Initially the district wanted our insurance to pay for this trial. We refused. When her communication evaluation was brought up last school year, we took Ella to an outside location because the school did not have what they needed to give her a complete evaluation. The district claims this was never recommended and only discussed. It absolutely was recommended and I was ready to go to war if they were going to fight me on that. In the end, they agreed to pay for the trial. Not without telling me how expensive it was going to be for them though. I don’t care but I am pretty sure everyone, including them, already knows that.

The final concern we discussed was transportation. I will save that conversation for a different post because it’s not quite resolved yet. We didn’t get what we wanted and have been talking to a lawyer to see if that can be changed. It sounds like there may be a way. If there is, I will find it. The whole thing snowballed into something bigger than I could have even imagined.

At the end of the meeting we asked for a program review and will be taking the next few months to find a new school for Ella. We can’t leave the district, and while we do feel that they play a role in the resistance we have been getting, at the end of the day we are not happy with the school itself and the way it is run. It may very well be a great school for some but for us, it no longer works.

Stay tuned. This isn’t quite over!

Don’t forget to follow us @ https://www.instagram.com/zurlnick_five