Friday, November 17, 2017

Writing a new chapter...

Most people know that we have moved to Scarborough in order for Tess to be able to attend a private school that takes only kids with disabilities. Although it may seem very sudden to many of you, this was a decision that has been years in the making.

A long time ago, our hometown school's Special Ed Director, who had just been let go, pulled me into her room one afternoon as I was on my way to pick up Tess. She was packing up her room and had wanted to tell me that I NEEDED to take a class in Special Education Law in order to protect Tess and ensure she would get what she was entitled to under the law. Considering that by that point in time, I had already had ample opportunity to see why she made sure to tell me that, I decided she was right and made it a top priority. I signed up, after getting a waiver from the professor who taught it (because my college prerequisites didn't allow for me to take it without a waiver) and it has been, without a single doubt, one of the best things I have ever done as far as taking care of Tess is concerned. If any parents who are reading this have kids with special needs, I'm telling you, TAKE THE CLASS. Know your, and your child's, rights. I cannot emphasize that enough.

Now for the backstory on how we got here.

While the class was a massive help and I did know Tess's rights (relatively speaking) and fought year in and year out to try to get even her most basic needs and IEP goals met, it just never seemed to happen.  Every year there were promises made to me by the school only to be broken. Then we would start each year from scratch as if none of those previous years promises were ever even discussed. I cannot begin to tell you the stress and frustration of having to go to IEP meetings every year to basically discuss the same things every time and/or be the one looked to to try to create her programming at school. I am her mom. That is way beyond my scope so I asked one of Tess's former therapists, who also happens to be my best friend, to help me write her curriculum. And it still wasn't followed through on by the school.

 Oftentimes, Tess was simply just forgotten about as though she wasn't even a student there. I wouldn't get any notes home, only knew about picture day because of family that had kids there or worked there, and Tess wasn't told about (no notes home)  any of the middle school dances (until last year after I had had to have it written into her legal notices that the school needed to be in better touch with me about things that were going on there). One year Tess was not even mentioned with her class (or anywhere else for that matter) in the school yearbook. It was like she just didn't exist there and I have to tell you, it broke my heart for her. (side note: I didn't then, and don't now, in any way blame the yearbook committee for the oversight. Her classroom teacher should have made sure ALL the names of the kids in that class were given). When I mentioned it to the Superintendent (along with a bunch of other issues that we were having) his reply was, "Well, she missed most of the year because she was sick." I reminded him that no, in fact, she missed a few weeks in October of that year due to illness but that she had had to remain out of school because the nurse was no longer working there and they never tried to hire a new one despite my many attempts at asking them to advertise for the position. 

Then there was the issue of the school rarely being ready for Tess to start at the beginning of almost every year and even if they did have a 1:1 for her, the programming for her wouldn't be ready. So many times it was Tess and her 1:1 wandering the hallways trying to find something to do.  But every year, we would hope and pray that THIS would finally be the year that things at school would be different for Tess. I'd go to the IEP meeting, leave feeling pretty hopeful about everything we had just discussed, only to be left disappointed before the year was done.

These are just a few of the many, many things that we've had to battle for every year for Tess, and this past summer, after finding out Tess was left sitting off to the side of the gym, basically ignored,  as her 1:1 did work on her laptop and the rest of the gym class was dancing and having fun, then learning things that made us realize we had to pull her out for her own safety, we finally said enough. This kid deserves to be treated better.

Enter the Morrison Center. The school that Tess is currently attending.

The decision to uproot our whole lives to move to Scarborough was scary and overwhelming and took us a while to fully wrap our heads around but once we'd finally discussed everything with the administration on the island and they agreed that they just could not provide what Tessie needs, there was no looking back. The school agreed that placement at the Morrison Center was best for Tess so we decided to take a leap of faith and jump in with both feet.

I'm not going to lie. It's not easy. We put our houses up for sale in order to help with the financial strain we knew this would bring. One of them is our dream home that took us over twelve years to build, on land that was given to us by my grandparents, and is on the water. But, as parents know, there's nothing you won't sacrifice to give your kids a better life. I'm here alone part of the week because Charlie needs to keep working on the island and we don't have full time nursing yet, so he has to keep coming back here to help with Tess. So yeah, it's hard. Then there's the fact that Tessie is a daddy's girl and misses not being able to see him every day. And it's weird for me to not be seeing Charlie every day. Let's be real here, I've been with the man since I was fifteen years old so this is taking some getting used to on my part as well.

But then we get texts from Tessie's teacher at Morrison and see her great big smile. And we hear her laugh while getting ready for school in the morning as well as when she comes home after school and we ask her about her day. She's honestly the happiest I think I have ever seen her. It's like she feels good about herself, the world around her, and her place in it for the first time in such a long time. Everybody already knows her and calls out to her or comes over to talk with her in the morning when I'm dropping her off and in the afternoon when I'm picking her up. The staff is well trained to work with her and bring out her very best, and that's just what they seem to be doing. Tess is thriving and it makes all the tears, the frustrations, and the sleepless nights worrying if we were doing the right thing for her worth it.

 I want to be sure to say that while I still have some not so great feelings about what has gone in the past with regards to Tess and the school, by placing her at the Morrison Center they are doing right by her now and I am very thankful for it. This was not written to try to make the school or anyone in it look bad, but it would have been very hard to explain such a drastic move without knowing some of  the "whys" of why we made this decision and that it's YEARS and YEARS worth of problems and issues, not just last year. We wanted it to work in our hometown school. We really did try our best to make it work there. And I do believe that the people at school cared about Tess but were simply overwhelmed by her needs, both medical and physical. And the kids, especially her classmates, were incredibly sweet and kind and protective of her.

 I also want to make it clear that I want our hometown school to be a great school and to do well. After all, I've still got a kid in there...she just happens to be a teacher. So despite everything that did/did not happen there with Tessie, I'm rooting for the school because there's also a lot of good people trying to do good things there. 

And finally, I do want to be very clear that Tess's therapists (speech & OT) were incredible with Tess and worked hard to try to help her in any way that they could and I'll always be grateful to them for their patience, good humor and love for Tessie.

Anyway, I digress. Here are some pics and a video taken today, of Tessie at her new school. They make my heart so happy that I could just cry tears of joy for her. This kid is loving her life and feeling pretty good about herself. What more could you want as a parent?

Let the new chapter of our lives begin.  :)