Recently I shared about a PE experience that rocked my world for a little bit. I shared the emotional side and the grief cycle of a parent with a special needs child. In this post, I’d like to share the nuts and bolts of working with the school, in hopes that it can help other parents in navigating this system!
Our PE Story:
Recently I received the surprising news that Ollie would need to stay in his wheelchair for PE and immediately I asked to have a meeting to discuss this decision futher. I couldn’t understand how it would be in Ollie’s best interest to be in a wheelchair for PE- especially considering the fact that last year he hadn’t been in his chair. He has an aide that assists him in walking, standing, maneuvering, etc. He had been walking on his own for 5 months by then.
The day quickly arrived to sit down with all parties involved. The Special Ed teacher, Adaptive PE, and General Ed PE teacher all came. I had brought a friend along that offered to come and I knew I’d heavily rely on her to balance me out. I was going in pretty emotionally charged.
We met for just 45 minutes and the PE teachers shared their concerns that Ollie and the other kids weren’t safe if he wasn’t in his chair. They were persistent in challenging my views and very comfortable in the years that they had been offering PE to typically developing and disabled children. I begged and pleaded for more understanding because I just couldn’t see how Ollie walking with an aide was going to put him or anyone else in grave danger. I openly shared that I was ok if he got injured. This is part of Ollie growing up. He falls. He can’t learn to walk while being assisted ALL OF THE TIME.
I shared that I am more concerned with the emotional injury that could occur if my kiddo who now walks is told that he doesn’t walk ‘well enough’ and is ordered to stay in his wheelchair. I had called his pediatrician and counselor to make sure I wasn’t being crazy and they had both agreed with me. So I sat in the meeting, respectfully disagreeing over and over again and I walked out of the meeting without any of my desires met.
I go and observe the PE class a few days later and the teachers and aide are working hard at making adaptations. As previously shared, I ask the PE teacher if she’s been able to see Ollie walk on his own. She says that she hasn’t so we show her all of his tricks after class. He does great and looks really sturdy and capable!
The Adaptive PE teacher and I converse for a little longer and she agrees that everything I wanted is reasonable for Ollie and all of his PE needs are met right then and there. She had simply never seen him move unassisted. And when she had been asked by the General PE teacher what she should do, they equated Ollie to another student at a different school.
I want to be frank here- I’m not mad or upset with the Adaptive PE teacher. She was truly doing her job of keeping everyone safe. She was working with the information that she had. She has limited hours and the system is whack. Ollie had shown up in a wheelchair. It’s easy to assume what is unsafe. And although I educated her on what he can do, she’s had years of parents telling her things that their kids can do but they really can’t (#denial… It happens to the best of us!). Schools get sued all of the time so it’s best as a rule of thumb, to “play it safe.”
But that doesn’t mean it’s right for my kid.
After much deliberation, I wanted to share my list of helpful hints in working with your childs school (whether you have a typically developing child or a special needs child):
Tips for Navigating the School System:
1) Professionals don’t always know your child, even if they appear to. Make sure you can assess the situation yourself.
2) Know what decisions are being made for your child.
3) Be persistent if you don’t feel comfortable with the accomodations that are being made.
4) Call in the troops (call your childs doctor, psychologist, specialist (OT, PT, Speech), a friend, a parent of another special needs child, directions service advocate, etc)
5) Know your rights, the ADA (Americans with Disabilities Act) is there to protect your child
6) Don’t threaten to sue. It will make you “that parent” and less people will be willing to work with your kid.
7) Be a squeaky wheel! Call meetings. Be a SWEET squeaky wheel that brings cookies.
8) Be respectful (there were moments I wanted to lash out, but in hind-sight I’m so glad I practiced self-control! All relationships are in tact)
The friend that came to the meeting with me gave me the best advice afterwards. She said, “You know your child best. Do what you feel is right.” And she was absolutely correct. Not even my best friends can make the best decisions for my child. These 3 were given to ME. I am a part of them, as they are a part of me. Because of that, I can walk with confidence when faced with decisions that affect them.
Stand tall Momma’s and Dadda’s. Stand very tall. Your kiddo’s are a gift to you and to the world. And you were chosen for them.
A letter to all the providers:
THANK YOU for the services you provide for my child and for other children! I know that your hands are often tied and there is so much behind the scenes that I do not know about that you have to juggle and take into consideration. Please know that I only share this to help parents navigate this big world of education that is so hard to understand!