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Hump Day Is Exhausting

Aug 31 2011

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Happy Earth Day to you, Happy Earth Day to you, Ha

Happy Earth Day to you,
Happy Earth Day to you,
Happy Earth Day dear planet...
....Happy Earth Day to you!

Thanks Jen for this sweet Earth Cookie recipe. I only swore once while helping Avery roll these out! (That’s a baking record for me. Ha)

#EarthDay2021 #SugarCookies #EarthCookies

[Image Description: Avery is standing by the window, looking outside and smiling. She’s wearing a green shirt and pink apron and is holding a plate of sugar cookies that look like the Earth with pink icing hearts.]

#IntellectualtualDisability #DevelopmentalDisability #Disability #NeuroDiverse #Epilepsy #SpeechDelay #SpeechAndLanguage #ChromosomeDisorder #3PDeletion #9PDuplication 🇨🇦

Skipping class this morning because... snow in Apr

Skipping class this morning because... snow in April!

#SpringSnow #wtf2021? #OhSnow #MerryApril

#IntellectualtualDisability #DevelopmentalDisability #Disability #NeuroDiverse #Epilepsy #SpeechDelay #SpeechAndLanguage #ChromosomeDisorder #3PDeletion #9PDuplication 🇨🇦

These have been some hard days here in Ontario. Bu

These have been some hard days here in Ontario. But, something that always makes me feel lighter, even on the heaviest days, is this disco dancing queen. 💫

Avery thought my off-camera (you’re welcome) moves were hysterical. “Sky pocket sky pocket.” It’s how we 70s babies roll. 💃🏼

[Video Description: Avery is learning a dance routine with her virtual dance class. She’s wearing a black and green #GetLowDanceCo t-shirt and shorts. She’s smiling and doing disco moves on a red yoga mat.]

#VirtualDance #KidsWhoMove #IntellectualtualDisability #DevelopmentalDisability #Disability #NeuroDiverse #Epilepsy #SpeechDelay #SpeechAndLanguage #ChromosomeDisorder #3PDeletion #9PDuplication 🇨🇦

Here’s the photo I mentioned in this podcast epi

Here’s the photo I mentioned in this podcast episode. 💕

How cute are these two on their “date” from a few years back?

Episode 3 is called “D Day.” The D refers to diagnosis.

This episode isn’t quite as rambling as the previous two. I think I’m getting the hang of it. Minus the crying bit and the part where my “iron pill alarm” goes off. 🤣

This one’s about what it felt like for us on Avery’s diagnosis day, and the days and years that followed.

There are also some take-always that might hopefully provide some clarity and comfort to families who are at the beginning of this life. This very bright life. :)

The aVery Bright Life podcast is linked in our bio. We’d love for you to have a listen!

[Video Description: A young boy and girl are sitting at a wooden restaurant table, smiling. Audio lines are waving across the bottom of the image, indicating audio from a podcast snippet is playing. There’s an orange cartoon cat sitting under the table.]

#AveryBrightLife #MomAndDaughterPodcast
#IntellectualtualDisability #DevelopmentalDisability #Disability #NeuroDiverse #Epilepsy #SpeechDelay #SpeechAndLanguage #ChromosomeDisorder #3PDeletion #9PDuplication 🇨🇦

I (mostly) quit using the term “Special Needs”

I (mostly) quit using the term “Special Needs” four years ago Though, I had a hard time replacing it with disabled.

If I’m completely honest, it still feels uncomfortable to me at times. I'm coming to understand that this is a result of my internalized ableism. I’m working on it, but it’s wedged in there pretty good.

I was always taught it was rude to call someone disabled. It felt like a verbal cousin of the r-slur.

So I've struggled to use it confidently, even when disabled adults stated it was their preference. Instead, I often used gentler adjacent terms like “atypical”, “special abilities” and “delayed.” I also used the hashtag #SpecialNeedsMom until very recently; rationalizing it as a necessary means of finding and connecting online with other parents with disabled kids.

**Since sharing this post and podcast episode, people have asked me for a suitable replacement hashtag—one that will connect parents of disabled kids as effectively. I don't have an answer, yet.

To be clear, it’s acceptable to address our kids’ needs. It’s the word “special” that many disabled adults find infantilizing and condescending .

I’m still learning about this and making mistakes. I’ve asked a lot of questions and I’m trying to apply the answers.

If you have a few minutes to read this post and/or listen to the podcast episode (both linked in my bio) I’d love to hear your thoughts.

[Image Description: Avery’s face is upside down, smiling, within a teal circle outline on a grey background. Below large orange quotation marks it reads, “I don’t have special needs but... I’m pretty special.”]

#NotSpecialNeeds #disability #DisabledIsNotABadWord #IntellectualDisabilities #ChromosomeDisorder #ParentingADisabledChild #DisabilityParenting #DisabilityAwareness

Avery’s cardiologist could’ve easily retired,

Avery’s cardiologist could’ve easily retired, but stayed on to see his patients through the pandemic. We’ve been with him since Avery was a baby and she just adores him and his wife who runs the “heart picture machine.” He told us today that our next appointment with them will be the last. 😭 💔

#pediatriccardiologist #mitralvalveprolapse #mitralvalveregurgitation #heartmurmur #longqtsyndrome

[Image Description: Young girl in braids and a pink jacket is standing beside her cardiologist. He’s wearing a face mask and goggles.They’re looking at images of her beautiful heart on a ultrasound screen.]

#IntellectualtualDisability #DevelopmentalDisability #Disability #NeuroDiverse #3PDeletion #9PDuplication 🇨🇦

Everyone has kitchen tasks they don’t like. Mine

Everyone has kitchen tasks they don’t like. Mine are opening cans, washing lettuce and the most tedious... grating cheese. Thankfully, there’s a new cheese grater in town!

Great grating Avery!!

[Video Description: Avery is standing in the kitchen holding a container of freshly grated orange cheese. She’s wearing a pink apron with purple lettering that spells Avery.]

#LifeSkills #KidsWhoCook #PizzaPrep #GrateWork #VirtualSchool

#IntellectualtualDisability #DevelopmentalDisability #Disability #NeuroDiverse #Epilepsy #SpeechDelay #SpeechAndLanguage #ChromosomeDisorder #3PDeletion #9PDuplication 🇨🇦

“Bastian’s going away to university,” she to

“Bastian’s going away to university,” she told a friend. “I don’t want him to leave me.”

Oh my heart. What do I do with this??

I don’t think I’ve seen a closer sibling duo. She tells everyone her brother is her best friend. He’s basically a third parent to her if I’m honest.

He watches her eat breakfast when I jump in the shower. He looks after her when I run out for groceries. He takes her outside to shoot hoops. He teaches her how to play Minecraft. He jumps on the trampoline with her whenever she asks and never declines an invitation to hide with her in her blanket fort.

In just four months our family foursome will be down to three.

We’re so excited for him. Going away to school is a momentous milestone. He deserves the freedom to spread his wings. But boy, how we’ll miss him. I can’t even talk about it without tearing up.

However, we will air on the side of happy adventure—so that I can actually function, but mostly so that Avery feels the positive energy and is excited too.

We’ve assured her that he’ll be home often to visit (aka do laundry and stock up on snacks). And we’ll go to visit him. She luuuuuvs a roadtrip. Plus, we reminded her that she’ll be so busy at “real” (in-person god willing) high school next year that time apart will fly by.

It will right?

Parents of uni kids, how did you cope? Did you feel like you prepared them well enough to leave the nest? And how did younger siblings handle the separation?

📷 posted with permission from Avery’s photographically elusive big bro.

[Image Description: Teen brother and sister are leaning back on a leather couch. Avery is covered with a mermaid blanket and Sebastian is clutching an ugly floral pillow. They are looking up at Avery’s purple sparkly cell phone as she takes this photo of them smiling together.]

#siblings #SiblingSelfies #IntellectuallDisability #IDD #DevelopmentalDisability #Disability #NeuroDiverse #Epilepsy #SpeechDisorder #ProfoundSpeechDelay #3PDeletion #9PDuplication 🇨🇦

Hoppy Easter every bunny! 🐰 #Eggcited #FunnyB

Hoppy Easter every bunny! 🐰

#Eggcited #FunnyBunny #Easter2021 #WhatsUpDoc #EggHunt

[Image Description: Young girl, Avery, is wearing colourful pajamas and a bunny hat, holding a pink fuzzy bunny Easter basket.]

All dressed up for an afternoon tea party with Ari

All dressed up for an afternoon tea party with Ariel the Little Mermaid. (I just love the upturned pinky!)

Swipe right to see a very fancy tea party dress. 💕

Ariel showed the party guests how to sip tea and use good manners. She told them that the most important thing about being a true prince or princess is... being kind.

Thank you @recessoakville for this sweet treat today.

#TeaParty #VirtualProgramming #KeepingKidsConnected

[Image Description: A young girl (Avery) is wearing a black sparkly party dress with a green velvet shrug. Hair is in a ponytail with a floral headband. She’s sitting at the table in front of a webcam. She’s sipping from a teacup with her pinky pointing up.]

#IntellectualtualDisability #DevelopmentalDisability #Disability #NeuroDiverse #Epilepsy #SpeechDelay #SpeechAndLanguage #ChromosomeDisorder #3PDeletion #9PDuplication 🇨🇦

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