Every time I engage with an adult who has just been diagnosed with #autism it ends in them telling me about the boy and how they know him more than we do.
If you have made it to adulthood without an autism diagnosis you have no - literally no - understanding of the boy. #autism
And just so we’re clear - non verbal doesn’t mean you’re shy or can’t talk in some situations or with some people. That’s selectively mute. Don’t adopt someone else’s disability just to make yourself feel more disabled
And autism doesn’t mean sauvant. Autism often means severe intellectual disability
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Just got told @OttCatholicSB has closed the special education classroom the boy should be moving into. Welcome to @fordnation’s #onted
And hey @OttCatholicSB shouldn’t you have told parents of special Ed kids and not have it casually mentioned to us?
And for all of those teachers and parents who vilified special Ed kids during the strike - this means kids like the boy will be fully integrated 100% of the time in a regular class with minimal or no support. No one is going to thrive. #onted#onpoli
The first bill for one month of therapy for the boy. The night I got this I stayed up all night crying and wondering how we could make this work. Thanks to @fordnation Lisa MacLeod and Amy Fee for freezing the list and gutting the program. #autism#onpoli
Imagine of you didn’t have a basement you could turn into an Airbnb, parents who would help and savings/retirement you could drain? There’s literally thousands of kids who are just waiting because they’re parents don’t have the same privileges. #onpoli#autism
if anyone wants to tell me the boy didn’t need this level of therapy. It was medically necessary and with this therapy he got into a public autism focused kindergarten the next year. He was denied entry before because his needs were so high. Therapy is necessary. #autism#onpoli
7 weeks ago today the boy woke up having soaked through 3 diapers sobbing because he was so thirsty. Diabetes was in the back of my mind for a few days but I thought it couldn’t possibly be that #autism#t1d
I took him to our doctor and just waited until they could see us. Within 20 minutes of him being seen we were at emerg. It was diabetes. #t1d
He had a yeast infection on his stomach from sweating sugars but before I was told it was a diaper rash because he’s “too old to be in diapers” (he’s only in bedtime diapers). It couldn’t be diabetes
The Boy’s blood sugar dropped to 1.2 twice this week at school. He was floppy. his amazing EA realized what was happening & had rescue meds with her. Kids without an EA don’t have this support. He could have died. Schools need a nurse. #onted#onpoli#t1d#autism
And @Sflecce your for profit nurses almost killed my kid when they tried to give him twice the dose of insult. So don’t pretend you are doing anything #onpoli#onted
And if you didn’t know (I didn’t know). Below 2.8 you may lose consciousness and die. So that’s what @Sflecce and his nonnas are ok with doing to kids with diabetes .
Someone asked me how the autism versus diabetes experience is different @CHEO so far. A 🧵 (noting that yes diabetes is more life threatening but also a life long condition).
With #autism we waited 6 months for an assessment. We’re told early intervention is key, the boy was put on a waiting list, we were refused info when we asked about progress on waiting lists, aged out of @CHEO at age 5.
The boy saw 2 specialists 3 times for 2 hours a time for 6 weeks. Then it was done. The government froze the #autism waiting list, as far as I know @CHEO complied and lied to parents.
One thing that sucks funding your child’s #autism therapy privately in this weird “not post Covid but we’re pretending” world is having to make the call of him staying home. Does he stay home with a runny nose? #COVID19#onpoli
The for profit company who provides his therapy charges us $600 for an afternoon of the therapy time regardless so we start to do the “how sick is too sick game”. He’s negative for Covid, no fever, he’s no longer coughing but How sick is too sick? #autism#onpoli#covid
And despite all the promises the boy is still privately funded, 6 years after his diagnosis. We’re not at the $86,000 a year in therapy costs we were but it’s still about $45,000. Privately. With no help. #autism#onpoli#covid