Let me tell you about Sam.
He is partially speaking, madly in love w/Daisy Duck & Minnie Mouse, a sensory seeker & avoider & is the best thing that ever happened to our family. He lives in a neurodiverse friendly house & we are two NT parents lucky enough to be there by his side
Before today I have not shared a lot of photos and info because I value our privacy. But this is Ontario. Where vulnerable people and their families have to share their most private medical history, family information and trauma publicly to be heard. Then shuffled. Then ignored.
I sound calm and articulate when I ask for help. It is a survival mechanism. This is urgent. This is a crisis. I fall apart in private. I spend hundreds of hours on the phone, emailing and having meetings. You see me hold it together face-to-face. I cry the ugly cry privately.
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On Thursday I was told this was a stunt. Let me make this clear. This is not a stunt. This is desperation. I have no other option. I don’t want to be here. We are going to have this conversation about goddamn systemic barriers. This is urgent. This is a crisis. #onpoli /1
We have tried to do it privately, advocating as politicians say you should “just reach out. We are here to help”. We don’t need an iPad. We don’t need sensory toys. We need access to healthcare and community services. One size does not fit all. /2
Programs like the OAP are extensions of healthcare. They are programs that are doorways to other healthcare (like surgery and emergency care), education, daycare, before and after school programs, sports, all the things a family takes for granted./3
I implore medical & community professionals, members of the panel of clinical experts and the implementation committee for the OAP to have the morale courage to speak about against the barriers families face. The lack of action. @md_mszubairi did in 2020. thespec.com/opinion/contri…
“Why do I continue to make diagnoses if the support systems are not there to definitively help children, youth and their families?” writes @md_mszubairi
This is Sam. Sam is 10 and never eaten food. I have asked for help in the healthcare system for more than four years. We are referred to the Ontario Autism program where he has sat on a wait list since July 2017. He is also a Hospital for Sick Kids patient. #onpoli /1
Today I start a peaceful protest and will sit and sleep outside Doug Ford’s constituency office as I advocate for my child. The systemic barriers we have experienced are horrifying. #onpoli /2
MCCSS sends us to the community for services. Sick Kids sends us to community services. Local services say he is autistic so we have to pay for services, which gives him access to healthcare. We plead w/ local organizations for help. #onpoli /3
I want to commend @MacLeodLisa for talking about her mental health. Opening up about the most vulnerable moments in life is incredibly difficult.
*You still here? Please keep reading.* /1
As a woman diagnosed w/ PTSD in 2015 after a significant medical trauma & near-death, I can relate to many of the symptoms & experiences Lisa described in her CTV interview yesterday. Trauma therapy saved my life. I am happy to talk mental health anytime, anywhere with anyone. /2
Lisa, now imagine that when you went to The Royal, instead of saying “we can help you” they said “there is a wait list. It is 18-24 months long. You will have to wait for help. /3
Today marks 900 days waiting for access to the Ontario Autism Program.
Please read this. Let me share with folks outside of the autism community the unbelievable systemic barriers that exist in this province. /1 #onpoli#CutsHurtsKids#AutismDoesntEndAtFord
Without divulging detailed private info, my child has a feeding issue related to his autism. Food = staying alive. Staying alive = healthcare. /2
With autism you are siloed. Pushed into the Ontario Autism Program because you have autism. If you don’t have buckets of money, good luck! Canada’s healthcare is not “universal” because it discriminates against kids, youth and adults w/ disabilities. /3