This week I wrote an Instagram post about being angry, about how advocating for my boys hasn’t gotten anywhere. We still don’t get hands-on physio, rarely OT, etc. I thought it was because I wasn’t vocal enough, wasn’t demanding enough. But the events of today have shown me it’s not me – I am calling every doctor I can think of on our team who can help, from the Children’s Hospital (who thinks it’s horrible we have no hands-on physio and desperately does want to help us, but cannot actually ORDER anything to happen), to our IDP contact (Canada’s version of what the US calls Early Intervention I think), to our physio team directly.
I am polite. I am firm. I am specific. I say, “I want at least 1 hour weekly for each child for hands-on, NOT consultative, physiotherapy due to their extensive brain damage and failure to meet any milestone so far.”
I say things plainly. I say I appreciate being told tips to help the boys at home, of course, but they NEED MORE. They need INTENSIVE, HANDS-ON PHYSIO-FUCKIN-THERAPY.
It’s not me inventing this. It’s science. Brain injuries respond to physiotherapy. Look up neuro rehab. Look up traumatic brain injury or SDR rehabilitation. Etc.
Today I was told that we are free to purchase as much private physiotherapy as we want, but that is the only way we will get hands-on physio. Our system does NOT offer this to special needs children, which I know is a lie because others in my region get weekly physiotherapy from the exact same place. I am then told they are underfunded, understaffed, so much demand, etc.
I DON’T CARE HOW BUSY YOU ARE.
Because you’re busy, my kids don’t deserve proper treatment for their BRAIN INJURIES? Because you’re busy, then it’s okay to deny CHILDREN the ability to maybe learn independent mobility skills that will affect their ENTIRE LIVES?
This person also told me that they often “wait and see” how a child will develop with their severe brain injury. Wow, that sounds like a totally research-based and progressive strategy, doesn’t it? Even if that were true, my boys are 14 months (11 corrected) and don’t roll (Axel just started), don’t sit, don’t crawl, Jaxon is functionally blind (which we’ve also received zero support or therapy for), don’t eat, etc… So what tha fuck are you waiting for? A fucking email from the universe saying, “Yup, they’re suuuuper delayed, bro.”
I’m even angrier than I was this morning. I thought if I just speak more openly, figure out what we need and then ask for it directly, surely someone will help us. Maybe they didn’t know we weren’t getting hands-on physio time. They’ll help if I just tell them.
Only to find out NO THEY WON’T. No one will help us. No one is coming to the rescue. The only thing that will rescue my boys is MONEY. And lots of fucking money, for services we have to pay for privately.
In a country that’s supposed to have “free healthcare” and “so progressive” and “cares about people”… Not true for disabled kids! We get NOTHING.
I’m not being overdramatic, as some say. I’m stating facts. They told me today, flat out, there is NO SUPPORT OR FUNDING for physiotherapy for cerebral palsy and/or disabled children. (Until the age of FIVE if you are lucky enough to be on the At Home Program.) We will continue to get nothing, unless we pay for it privately. We don’t have money. We’re more privileged than many for having a roof over our heads and food to eat, but we cannot afford the multiple thousands of dollars EACH MONTH for YEARS that will be necessary to get even the most bare minimum physio for our boys. (We do sincerely appreciate all who have donated to our GoFundMe as it has allowed us to purchase a few months of physiotherapy which is SO WONDERFUL, but the stresses of years ahead of this still weight heavily on us.)
I CAN’T BELIEVE this is our system. Something needs to change and I am going to change it. Not sure how yet, because ANGER, but something will change.
Children with heart problems get surgery and oxygen. I am NOT saying things are comparable or easier for anyone else, I am just saying that in our system, if your kid has a heart problem, they are covered for surgery, supplies, etc. No one would question that. Of course a surgery would be financially covered. It’s the treatment for that kid’s MEDICAL issue.
My boys have brain injuries. It is a medical issue. The treatment for that is physical therapy. But somehow that’s not covered? Why not? Why are my kids (and thousands of other Canadian kids with brain injuries) not covered for the TREATMENT for their MEDICAL condition?
Forgive the frequent use of caps in this post but I am so livid.
Who do I know in the media? Literally, someone reach out to me. I’ll talk on camera. I’ll tell our story (and many others’). I don’t think most taxpayers know that our country doesn’t give a shit about disabled kids, and maybe if they knew, things could change.
And things NEED to change. We simply must do better for special needs and neuromotor-affected children in our country. They deserve treatment.
If you are also struggling with these same things for your child/children, please feel free to reach out to me on either Instagram or email. I’d love to connect with others in the same position and figure out how we can help each other, and make a difference.