The Last Meeting
A milestone is happening.
I'm brushing my hair and applying a little make up to cover up my severe lack of sleep thats slapped all over my face. I get dressed and give myself a little pep talk because advocating for your child never gets easier. My girl is graduating grade 8 this year and this is the very last Individual Education Plan (IEP) meeting I will attend for her elementary school career.
My daughter is 12 years old. Her name is Isabella but anybody who knows her calls her Izzy. She is almost a teenager and she has taken on the role of that very seriously. Izzy is smart and beautiful. She has empathy and compassion that is wise beyond her years. Her laugh is contagious and she really knows how to tell a story. Her friends love her, her teachers have wonderful things to say about her, and she is my literal favourite person on this Earth.
Izzy also happens to have Spastic Quadriplegia Cerebral Palsy. She was born with the weight of the world pulling on every muscle in her body. Every single thing this girl has to do takes effort and requires physical assistance. I have worried about this amazing little bean since the day she prematurely made her entrance into this wild world. She knows her limits and she works hard to do the best she can. One thing she lets the world know is that her walker and her wheelchair do not define any part of who she is as a person.
Aside from about eighteen bazillion medical appointments my little chick has had in her life time, her biggest challenge always existed in school. One thing I definitely did not plan on was school being difficult in any way. It seemed like the easiest of all we were going through. You get up, go to school, recess, snacks, you go home. You are assured at the school information night that there are people hired specifically at school to help kids like Izzy. I thought this would be my chance to exhale. There is probably a beautifully written blurb on your schools website about how inclusive behaviour is everything and that every child really does matter.
The heavy reality that you learn as a parent to a child with special needs is that this information is just utterly incorrect.
When you have a child with a disability your new job becomes proving all the different ways your child actually does need help...and that the help that is being offered is minimal and not helpful at all. The school board does not hire enough people for all the kids that need help. Too much pressure is put on the classroom teacher who already has so much to deal with. We have had some magical Educational Assistants that have been with us also trying to advocate for kids like Izzy throughout the years. The problem lies within the school board and the promises they make that they don't keep. I had a giant bucket of reality dumped on my head after the first week of school Izzy attended.
I wish somebody told me when you walk through the school doors and drop your child off you're actually enlisting in the new war. The war of equality, war of basic human rights, and the biggest battle...for the IEP to be followed. I can't tell you how many times I was told the IEP is a legal working document and can be modified and changed to suite the needs of Izzy.
I would spend the next 9 years of my life having endless meetings with educators and support staff explaining the same things over again over again. In the beginning I was determined to never become "that mom" at school. I very quickly earned that title almost instantly when I started making laminated information sheets about how to physically support Izzy so she didn't get hurt. There were so many staff changes throughout the day it was almost impossible for them to implement the IEP.
Three years into our journey of school and Izzy had endured so many injuries. So many mistakes were made with her physical assistance I thought I was going lose my mind.
One injury, two injuries, three injuries no more. My girl broke her glasses and took a mouth full of gravel to her teeth when her walker hit bump in the ground because somebody wasn't hanging on to her walker outside. "Within arms reach" or "hands on" was a very distinct line in her IEP that I was assured was always followed. When they blamed the wind knocking Izzy over I took matters into my own hands. I had her paediatrician attend an IEP meeting at the school. I desperately needed this legal working document to be implemented.
After these very serious meetings I thought I hit the jackpot and things were going to go so smoothly now. Let me tell you, I had never heard so many speedy high heels quickly dodging my hallway hellos, phone calls sent to voicemails, and being asked not to speak to the staff anymore after her specialist gave light to her needs. I felt more like Voldemort than a mom.
I was totally defeated. Maybe I'm the problem? Helicopter mom extraordinaire...until I met another mom like me. We bonded over the same horrible experiences...then I met another mom...and another. Then I joined a Facebook group. Soon I would learn that every single parent I am talking to is experiencing something just the same as I am going through. I felt like I could breathe again and in that same breath I was furious.
After exhausting every resource to keep my girl safe, I was able to persuade the school board to let her switch schools. I was left with no other choice and the confidence to make this decision came from all the support my special needs parenting group gave me. The school gave me the support you would give to a criminal. They let me know our problems would follow us where ever we would go. The new school knew who I was and Izzy's experience was significantly better for the most part.
Our kids deserve better than this. They deserve to go school and learn in an environment that is safe. They also deserve to have the opportunity to have an inclusive environment, one that is not just written on a school website. Some people would say SN parents are a lot to handle but just imagine how pissed you would be if your star athlete child was benched the whole season...getting injured while waiting for their turn...and coach tells you that you're making up all the negative things that are happening.
I have a lot of thoughts about today's IEP meeting. I thought it would be relieving to have my last one. This is it...I don't have to do this anymore. As I entered the space in which we would have our last conversation about the famous working document I am ready to have this nostalgic moment. I even expressed how significant this moment was which was received by crickets. Then I realize...the principal didn't show up?? The meeting was less than ten minutes and it ended so abruptly with words somewhere along the line of "we're so glad the IEP has worked". I thought I was hallucinating. LOL but just like that it was over.
My stomach felt weird and as I sat there stunned I reached up and I felt my cheeks, they were wet. Am I crying?! I thought I was supposed to be relieved! I went straight to my parent support group and typed in exactly how I was feeling where it was received well with open arms and comforting words.
What a journey this season of life has been. I look so forward to Izzys future and all the great things she will accomplish...with or without an IEP.
Talk to you soon.
P.S I decided that I would make some special personalized ornaments for those who celebrate their own special needs warrior. Click the link below for more info!