Someone used the line “we all have the same 24 hours” today on me when we were talking about exercising and meal prep. I asked him how he managed to get in his 2 hours at the gym after work with his disabled child who needs 24/7 supervision. He said “oh”.
Because some people are misunderstanding (maybe not my best phrased tweet) he doesn’t have the child who needs 24/7 supervision. I do. His “oh” was I hope the realization not everyone has his freedom of time.
Calling it now -
@Sflecce
will force a strike, schools will close, transmission of
#Covid
the flu, noro, will decline,
@CHEO
et al will get a small reprieve.
@fordnation
will use that to brag about their handling of healthcare and blame the union for the strike.
#onpoli
#onted
I don’t want cheap beer. I want an end to artificial wage restriction for 1 million + Ontario workers (mainly women), funding for schools so families don’t have to buy basic supplies like paper towels, and stable, sufficient support for home care and LTC.
#DreamON
#onpoli
I don’t think I’ve felt as abandoned during
#covid
as I do now after that news conference. I can see why Moore was kept away from journalists. he admitted the death of medically fragile or disabled children isn’t important. Imagine what he says/does away from the cameras
#onpoli
Today the boy’s nurse (paid for by the Ontario government) didn’t show up at school to give him insulin. The private company contracted to give health care couldn’t find the nurse bc stopped answering their phone.
#onted
#onpoli
#autism
#t1d
The boy just used his AAC to request “sugar”. His therapist thought it was just pressing a button randomly but after he did it three times she came to get me to check just in case. He had quite low blood sugar and needed some sugar! This is huge
#autism
#t1d
Claudia, a small business owner of 23yrs, is a victim of the
#ServiceOntario
Scandal
"I've been a PC my entire life, I am finally done."
The people of ON are done with Ford giving our public assets & services to foreign corporations!
#onpoli
Where do we go for a class action lawsuit against
@fordnation
and
@Sflecce
for denying children with disabilities access to education? There’s (again) no plans in place of tote child can’t participate in virtual learning.
#onpoli
#onted
The boy kissed me for the first time ever today. It involved a sniff then a kiss which was more of a nose-lip boop on my cheek. But then a giggle and a tight squeeze of my hand. He then fell back asleep and I laid next to him in total disbelief
#autism
#MothersDay
The stress of having a child with severe
#autism
and pica when
@CHEO
is basically shut down is why my watch keeps telling me my heart rate is “too high”. In 30 years there’s going to be research on the negative impact of
@fordnation
on the health of kids and parents
#onpoli
Ontario’s Financial Accountability Officer has found that the Ford government failed to spend $7.2 billion of its budget last year, including $1.7 billion unspent on health as ERs are closing and surgery waitlists are growing
#onpoli
Snuggling with my non verbal kid as he cries in his sleep from a fever while people tell me “kids get sick there’s nothing we can do because I won’t want to wear a mask” Is basically my “burn it down” moment.
#autism
#COVID19
#onpoli
The thing about this is- my job doesn’t involve anyone dying but there’s no way my boss would approve my vacation during a crisis. So either Moore and Ford don’t understand what’s happening or they just don’t care. What a legacy for their families to live with.
#onpoli
#covid
I’m still stunned that
@ShopprsDrugMart
in the glebe tried to recommend a homeopathic cold med (with honey) when I asked for help for my type one diabetic son. I’m stunned they even carry that garbage.
My mum got a walker 3 weeks ago. Because she’s almost 80. She’s gone from not leaving the house to walking more than 3 km to her grocery store because of the confidence her walker is giving her. Mobility aides are actually about mobility.
#Disability
My mum is experiencing this - she ran the numbers and it’s cheaper for her to stay in her huge house than to downsize to a condo or apartment. Now she’s dealing with property developers trying to get her to sell with low bids.
The boy dropped to 3 today at school and his EA followed every protocol and even then couldn’t get him up above 3. His EA was so upset until I pointed out that all of their interventions meant he didn’t fall into coma range.
#onted
#t1d
that’s what EAs do.
@4WheelWorkOut
Hey - just to flag - not all autistics have a special interest. That question to me would make me cry because I’m so tired of people assuming that my kid has one.
Today at
@chaptersindigo
the boy accidentally knocked over some watering cans on display. Two teens who didn’t work there, walking by caught two of them before they even hit the ground and quickly went to work picking up and putting the other 6 back.
#autism
#ottawa
The boy just said “ahh dun” and signed “yes” when I asked him if he was “all done” while we were outside. That’s never happened before.
#autism
#peofoundautism
I usually say “baby steps are stil steps” but the girl taught me “little things are big things”.
The boy’s blood sugar was high today and he found his insulin pen and brought it to me. That’s a really big little thing.
#autism
#t1d
Dealing with
@ShopprsDrugMart
: They guaranteed the boy’s diabetes scripts would be ready at 3pm today and at 7pm they weren’t. Now we’re being told “you should have talked to the pharmacist and not the pharmacy staff”. So they admit their staff are incompetent?
The boy had a rough day at therapy MikePMoffatt was there & realized his blood sugar was dangerously low & got them up (candy rockets are the boy’s favourite) and then the boy had his best OT session ever in his 3 years. Healthcare needs to address every part of us
#autism
#t1d
The boy doesn’t know tomorrow is his 8th birthday. Today at the store the girl stood in front of a shelf for 8 year olds lost. And she cried a bit when I guided her to the 6 to 12 month old shelf. But when we left she said “I think he will love what I got him”
#autism
The girl suggested we make an end of the year list about the boy and everything he can do now that he couldn’t January 1st 2023. Buckle up. It’s a long & amazing ride in no particular order:
#autism
#newyear
#t1d
We had someone come to the door today to ask for us to sign a petition against a new building across the street from the Glebe. I just said “Mike Moffatt lives here” and they said “oh” and turned around and left . .
@MikePMoffatt
Did my first belly injection on the boy. I was so nervous and convinced I would stab a vital organ because I’m an idiot and clearly not a real doctor. Spoiler - I did not hit an organ and he giggled.
Today at the park the boy decided he was done and got up and left. My brother was with him so he just let him walk and followed him. The boy walked the 6 blocks home with no problem. I had no idea he knew how to get home.
#autism
The boy has been having scary lows. I called the diabetes team
@CHEO
. In 25 minutes I was talking to a nurse/educator and we came up with a new plan for meals/insulin. I feel so supported yet so disappointed because
@fordnation
had a model for
#autism
& he did nothing
#onpoli
As the parent of a child with severe
#autism
- having a sensory corner in a classroom isn’t “trendy” it’s a teacher using their own money to deal with the fact there are no special needs classrooms anymore.
#onted
#BackToSchool
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
Today at school the boy got up out of circle time and went to the bathroom all by himself with absolutely no prompting. He’s never done that at school before. His EA was almost in tears telling me because she was to happy.
#autism
#onted
I have a bunch of new followers - so I want to do a disclaimer: I swear a lot, my kids are autistic, that’s a disability not a superpower, my son is in therapy which includes ABA, I’m dyslexic so spelling mistakes are common. Also, sometimes I sew. Feel free to see yourself out.
The girl has a cold (not Covid or the flu) and has swimming today. She suggested we call in sick. I said “I think it’s a good decision because swimming won’t be fun if you’re not feeling good”. She said: “I just don’t want to get other kids or instructors sick”
#autism
#onpoli
The girl got 86% on her grade 7 physics test this week. I’m so tempted to photocopy it and send it to her French immersion math teacher who told me “she can’t talk she shouldn’t be in my class”.
#autism
#onpoli
I’ve spent the year telling the teachers at the new school the girl is smart but needs time.
She got Ds on her report card. I told them I wasn’t worried. She needed time.
Today she got 13/16 on her French test.
She accidentally wrote the gr 8 test. She’s in gr 7
#autism
I’ve seen a lot of tweets recently about how we need smaller house, that our houses are too big etc.
I don’t disagree but what that conversation doesn’t seem to include:
1. we are now expecting houses to act as offices often for several people at a time.
We are literally sending terminal children home to die rather than mask. And people tell me I’m overreacting when I say that my disabled son will be triaged out of care if the hospital is overwhelmed.
#onpoli
We live in a society that would rather see pediatric hospice patients discharged so staff can be redeployed in hospitals than to enthusiastically demand and support the easy means of mitigating the transmission of the airborne diseases crushing the system
Today the boy gave me his bubbles (so many times), gave me a hug, said “play” and signed “water”. It’s the most engaged he’s been in ages. I think he’s feeling better.
#autism
#t1d
.
when your son can’t go to school because of his new diagnosis so his EA goes and finds his sister to spend some time with her to make sure she’s ok. We don’t deserve EAs.
#onted
#onpoli
@OttCatholicSB
#autism
#T1D
The girl’s school has gr 7/8 plan, prep, serve & clean up lunch 3 days a week. It’s been life changing - she rocked as the head chef, chose a balanced meal all of her classmates could eat, learned how to do a full kitchen clean & tried lots of new foods.
#autism
@oldenoughtosay
My dad (Danish immigrant to Canada) once accidentally asked, in very old fashion rural Danish, the Queen of Denmark what she did for a living. . He said it was a bit awkward.
The boy now sees the lancet, sticks out his thumb, waits and then pulls it back when I try to take his sugars and laughs at me. I’m going to count that as a success. He’s also still alive which is also a success.
#autism
#t1d
@4WheelWorkOut
That makes sense. So often it’s the first thing that’s said to parents. My response for a while was “fecal smearing” which tended to shift the conversation to something more productive. But I’m thrilled you approached it in a way that made sense for the specific person.
Today on our road trip the boy, who is non speaking, poked me through the headrest. The girl said “maybe he’s telling you his blood sugar is low”. So I tested him. 3.1.
Non speaking
#autism
and
#t1d
is terrifying. Big sisters are amazing.
@MikePMoffatt
I need to also be able to be a good parent and the new mandate my employer has given is going to make me choose between being a parent of a disabled child or being a woman with a PhD actively trying to make the world better. RTO means I can’t do both.
#autism
#t1d
#ottawa
I will spend the rest of my life trying to control the boy’s blood sugar so he doesn’t die - seeing Gwyneth Fucking Paltrow saying she doesn’t want to spike her blood sugar as an excuse to starve herself is horrifying. She’s promoting several eating disorders
#t1d
#GwynethPaltrow