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@StandingHannah
Apr 1 • 9 tweets • 3 min read Twitter logo Read on Twitter
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
He wasn’t sleeping but he was very tired during the day. We were told he was calming down as he got older. #t1d
What was actually happening: His body was sweating sugar and peeing constantly to try and get rid of the sugar. He smelt like fermenting sugar. He was so dehydrated/his body couldn’t use the sugar for energy he was constantly tired. #t1d
He wasn’t sleeping because his body was waking up so he didn’t die in his sleep. #t1d
He was sick constantly from the late fall. He would suddenly burst into tears in the afternoon. He was dying. We just didn’t know. #t1d.
We caught it early. My post doc in diabetes tech helped. We went home that night. Most kids to into icu. But he was dying and we didn’t know. #t1d
He is ridiculous and amazing and thriving. He’s not dying anymore #t1d

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More from @StandingHannah

Dr Rasmussen Profile picture
Mar 31
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 .
Read 4 tweets
Dr Rasmussen Profile picture
Feb 11
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.
Read 9 tweets
Dr Rasmussen Profile picture
Jan 25
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
Read 12 tweets
Dr Rasmussen Profile picture
Dec 7, 2022
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
I got to sit next to a lovely non verbal teen as I tried to work in the waiting room and she kept trying to get me to log into my work account so she could use it. . .
Read 4 tweets
Dr Rasmussen Profile picture
Dec 5, 2022
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
Non verbal people (kids and adults) are at a much higher risk of abuse. So him knowing his voice is being taken seriously is empowering to him in a way most of us can’t imagine. #autism
Read 4 tweets
Dr Rasmussen Profile picture
Mar 6, 2022
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.
And he’s autistic. His sister is terrified about a school shooting because she knows he wouldn’t survive. Imagine parents of autistic children in #Ukraine️
Read 5 tweets

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