I ended up in a conversation today in which I was told I was lucky that the boy had a big sister because we knew she would be his caregiver. holy fuck I wouldn’t expect that of the girl. #autism I wish I had been fast enough to ask if they would have responded the same way if the genders were reversed.
Siblings should not be the default caregiving plan (they often are because of a lack of anything else) but we shouldn’t pretend it’s ideal. #autism

one thing Nancy et al say is “imagine when your kid reads this”. Which is ableist. But ok imagine your kid reads that you are celebrating they are non verbal, self harm will never be independent, can’t communicate pain. etc. Imagine them reading that. #autism If that’s not what Nancy et al are celebrating then maybe they should stay in their lane about what parents of profound #autism are discussing. And if they see celebrating a child or adult not being able to express pain etc. Then they need some serious intervention.

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?

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

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

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

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.

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

Today the boy met two non verbal autistic teen boys at therapy. The boy went in for a hug (which is now a thing I guess) and they were lovely about it. One of the teens used his aac to say “dude personal space” #autism The east of the time the boy tried to engage and the teens tired to pretend he wasn’t there. Which was actually what I would expect for teens and 7 year olds meeting. #autism

Today the boy woke up with bed head so his grandma brushed his hair. (Which he did not enjoy). At therapy his SPL asked him “who cuts your hair?” And he said (on his AAC) “grandma”. Not quite right but such a big sign of his receptive language and use of his AAC. #autism The best part is that his therapists (spl and ABA) now ask me about what he says because it’s no longer just stimming or babbling all the time. And they know that and are not dismissing what he says. #autism

Something I’ve been thinking about a lot - #autism doesn’t have borders (no disability does). I’m imaging the boy and the girl in #Ukraine️ and how I would get them out and then what getting them out would mean to them. When the boy was a newborn I remember looking at his nursery thinking “if the Russians were bombing what would I grab”. I didn’t think I would wonder the same a week before his 7th birthday.