#ItsASiblingThing #NationalSiblingsDay2021 @SibCollab - To my fellow brothers and sisters of ppl w disabilities - a thread🧵1/16 :
I see you. Being careful this year about which job you can take so that while living in your apartment in isolation you know that you can still pitch in at your parents’ home, while making sure no COVID enters the doorway. 2/16
I see you. Translating and advocating in the hospital, managing what happens to your sister and insisting she not be left alone, but also tending to your parent, both hospitalized because of COVID. 3/16
I see you. Going onto every website at midnight when new appointments are made available, searching for clues on twitter, so you can book a vaccine appointment for your brother and your parents. 4/16
I see you. Moving back to your parents’ home for a few weeks at a time, taking turns with your other siblings to help your aging parents manage with your older brother, who is staying with them during the pandemic. 5/16
I see you. Working from home, and moving your sister out of her supported living apartment to live with you for a few weeks las spring, which has turned into more than a year. 6/16
I see you. Buying every kind of mask you can find online, enough to open an entire store, trying to find the perfect one that fits your brother’s face and he won’t pull off because it is uncomfortable. 7/16
I see you. Starting a petition and speaking to the media, while going to school and balancing work, building awareness in your province so that your sibling and others are not left out of the vaccine rollout. 8/16
I see you. Living far away, feeling helpless that you can’t lend a hand, doing what you can with Zoom, and ordering various treats and games, and favourite items, hoping they might bring some joy to your brother and a bit of respite for your parents. 9/16
I see you. Frantically reading everything you can get your hands on, so you can understand the risks and help the health care providers and the rest of your family make the best decisions possible for your sister. 10/16
I see you. Sending your kids to school, knowing it means you can’t have your brother living with you, because of his vulnerability were he to get sick. Making the best of virtual visits but knowing that what you really wish you could do is just have him over for the weekend 11/16
I see you. Investing in the warmest outdoor clothes so that you and your sister can enjoy time together for those Canadian winter outdoor visits no matter the weather. Because canceling is not an option. 12/16
I see you. Curling up in bed under the covers, weeping that you aren’t doing enough to keep her safe, to make her happy. That tending to your aging and fragile parents, advocating for your sister, and taking care of your own family is just too much some days. 13/16
To my fellow brothers and sisters: I know it was not supposed to be this way and I know that we don’t know when it will get better. 14/16
I also feel the love that hurts, the frustration when people don’t get it, the rage when others act cruelly, and the sadness when things are wrong but seem impossible to fix. 15/16
Your courage, creativity, persistence, & love help me to feel less alone in my own experience. I hope you feel a little more seen today and that you can find a few moments to celebrate your brothers and sisters, wherever they are and yourself. #ItsASiblingThing @sibcollab 16/16
You can read our research update on Canadian Siblings w @camhnews and @SibCollab during #COVID19 w @BriRedquest @ami_tint & @helenries here - Learn about what sibs are experiencing & what they need porticonetwork.ca/web/hcardd/new…

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More from @yonalunsky

9 Apr
Tomorrow is #NationalSiblingsDay in Canada. As difficult as things are today, I want to make sure we pause to acknowledge and celebrate siblings tomorrow, with and without developmental disabilities. 1/
Our UK colleagues @Sibs_uk have just released a report on sibs of kids with disabilities and the impact lockdown has had on them. You can read their report here and see the news coverage on @BBCNewsround
here bbc.co.uk/newsround/5666… 2/
“Sibs should not be the forgotten children. We call on government to make sure that siblings of disabled children are recognized as children in need of recovery support, as part of a whole family approach” said @Sibs_uk Chief executive @clkgibson 3/
Read 11 tweets
19 Jan
Sharing our paper rdcu.be/cdknw evaluating virtual group based mindfulness course for family caregivers of older autistic youth & adults w @ProfRHastings @DrJonathanWeiss @CarlyAlbaum @suehutton_msw Wei Wang, Amy Baskin & Lee Steel - a thread on what we found .. 1/11
Our first @camhnews mindfulness study showed the importance of bringing families in similar situations together, recognizing the realities of caregiving while learning mindfulness - group was acceptable to families and led to reduced distress 2/11 link.springer.com/article/10.100…
We then found that parents who participated in this mindfulness course reported greater reductions in distress, which remained 3 months after, compared to parents who attended a 6-week support and information program 3/11 link.springer.com/article/10.100…
Read 11 tweets
14 Nov 20
No data yet in Canada, but we saw major reports from UK and US this week on deaths from COVID during first wave for ppl w developmental disabilities. At a first glance, both reports garnered media attention but what do we do after we see the headlines?
If we have developmental disabilities or we love someone who does, we panic. We don't know what it means but we feel frightened, angry, let down again. What are people doing to help and change the trajectory during this second wave?
Here is the report from the US that was covered in the New York Times s3.amazonaws.com/media2.fairhea…
Read 23 tweets
16 Nov 19
Today I have decided I am going to stand on my soapbox and say all sorts of things. If you work in health care or know people who do, please share this episode with them.
But they need to listen to the whole show and not just read the blurb about it. They can listen to my piece (thank you so much for including me in this conversation Jeff & Brian), they can celebrate the great ending with Victor and watch the short video with him, Shineeca & Erica
they can learn from Madeline Burghardt about the history of Huronia and other institutions (and read her book Broken to learn more), but they have to listen to Jeff’s interview with Christopher.
Read 23 tweets

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