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Wordless Wednesday – Avery’s Blue Period

Aug 17 2011

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Related posts:

Me and My Shadow — (Mostly) Wordless Wednesday

Wordless Wednesday–Overwhelmed

Wordless Wednesday – Friends

Wordless Wednesday — Burr It’s Getting Cold Outside

The Lies We Tell As Special Needs Moms

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Welcome! You might be here because you also love a child with a disability. My daughter has a chromosome deletion which causes an intellectual disability and epilepsy. Forever in Mom Genes is where I share stories and information about atypical parenting and family life. I'm so glad you're here. Read more.

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For several years @savvymomdotca has been generously gifting their contributors tickets to the annual Ross Petty holiday pantomime. It’s amazing and we look forward to it every year. But, going to the theatre with children isn’t always easy. Especially if they’re really young, or if they have sensory issues or disabilities. ⁣⁣
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Over the past few years outings like this have been tricky. My daughter found it difficult to stay seated for the whole show. She didn’t understand the plot and found the lights and music to be a lot to process. ⁣⁣
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This year however was freaking magical. And not just because the show was in the Winter Garden Theatre (it’s stunning in the most whimsical way) but this is the first year that Avery “got it.” She clapped and sang and booed in all the right places. She got the jokes (aside from the cheeky adult humour which of course I fully encourage and appreciate ). She was on the edge of her seat fully immersed in the show, laughing out loud with her friends.⁣⁣
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At the end of every scene she grabbed my arm in a panic and said, “It’s not over yet, right??” and she breathed a sigh of relief to hear there was more. ⁣⁣
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This was a huge beautiful win for us and another developmental milestone. We’re officially a theatre family now. ;) ⁣⁣
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Thanks @rosspettypro for creating another brilliant show. I think this is my favourite to date. ⁣⁣
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⁣**Edited to add... one of the most significant and meaningful parts of the plot for me was that kids don’t all learn in the same way. They should be permitted to learn in whatever ways suit them best. Also, free post secondary ed for all! Kudos to you @mattymurray123 and @traceyflye...you nailed this. ⁣ 👊🏼❤️⁣
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#lilredridinghood #rosspetty #24yearsandcounting #familyentertainment #theatre #toronto #sugarbum #sherrifeofnaughtyham #allthepuns #holidaytradition #specialneeds #disability #specialeducation #inclusiveeducation

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When I told our occupational therapist we cancelled the G-Tube surgery scheduled for our daughter, I sort of expected her to be as excited as we were. I wasn’t prepared for her harsh words. ⁣
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She told me I was dead wrong. She said Avery would never feed well enough on her own and she called me a negligent parent for cancelling the surgery. Ouch. ⁣
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I don’t remember what I said in response. I know I cried and mumbled something about knowing what is best for my child. ⁣
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We never went back to see her again. The trust between our family and that therapist was completely destroyed.⁣
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That’s the thing about therapists—physical, speech, occupational, and behavioural. They support us and hold our hands and teach us what to do and cheer the loudest when our kids achieve a goal. It’s vital to find a therapist you click with—somebody who celebrates with you and supports your child.⁣
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I wrote a story about finding therapists who are the right fit for your family and about the power of early intervention. The link to the post is in my bio. ⁣
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Spoiler alert: Avery learned to eat and drink on her own. Though g-tubes are absolutely necessary in so many cases, this didn’t end up being one of them. :) ⁣
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#parenting #therapy #therapists #earlyintervention #IDD #intellectualordevelopmentaldisability #developmentaldisabilities ⁣
#disability #advocate⁣
#specialneeds #specializedneeds⁣
#disabilitysupport #epilepsy #specialneedsmom #momgenes #unique #speechdelay #inclusion⁣
#chromosomedisorder #3Pdeletion #9Pduplication #foreverinmomgenes

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It’s the most wonderful time of the year and also the germiest. This girlie has been hit with an icky virus. She never complains so it’s hard to gauge how she’s truly feeling. ⁣
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The wet cough is unpleasant, but it’s the fever that freaks me out. Her breath is so quick and it brings me right back to the early days when she had repeated chest infections and bouts of pneumonia. Most landed us in the hospital to treat symptoms or because of seizures brought on by an illness. ⁣
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Those days seem so far away and yet uncomfortably close. ⁣
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We’re currently hanging out on the couch watching a Christmas movie while ice pellets bounce off the window all cosy under fuzzy pets and fuzzy blankets.⁣
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#decemberbugs #epilepsy #specialneeds #parenting

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Last year our cheer coaches vowed to step it up this season—higher lifts, moving pyramids, next level dance moves. They weren’t kidding!⁣ ⁣
Way to go Team Eternity!! Your determination, positive attitudes, and giant smiles are everything. ⁣
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Keeping practicing and this routine is going to be the best ever! ❤️ 🖤 ⁣
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@pctagram #powercheer #peprally #cheer #specialneeds #adaptive #inclusivesport #coacheswhocare

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And the award for the most supportive cat goes to...⁣
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She’s home sick today and her cat hasn’t left her side. Awwwwww. 😻⁣
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#sickday #justacold #petsknow #kidsandcats

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“You are a marvel. You are unique. In all the years that have passed, there has never been a child like you. Your legs, your arms, your clever fingers, the way you move. You may become a Shakespeare, a Michelangelo, a Beethoven. You have the capacity for anything.” — 𝘏𝘦𝘯𝘳𝘺 𝘋𝘢𝘷𝘪𝘥 𝘛𝘩𝘰𝘳𝘦𝘢𝘶⁣
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#different #unique #IDD #intellectualordevelopmentaldisability #developmentaldisabilities ⁣
#disability #advocate⁣
#specialneeds #specializedneeds⁣
#disabilitysupport #epilepsy #specialneedsmom #momgenes #inclusion⁣
#chromosomedisorder ⁣
#3Pdeletion #9Pduplication⁣
#foreverinmomgenes

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I’ve been sharing stories about atypical parenting and family life for over a decade. My little blog, Forever in Mom Genes is where my heart lives. But, I’ve been neglecting the maintenance of the webby part it—the header image no longer conveys my message, I’ve outgrown the tagline, there are broken links and missing images. So I’m trying to fix it. By myself. And because I’m a perfectionist with limited techie skills, you can imagine how well it’s going. Hint: there’s a lot of swearing and immature hissy fits. 😆 ⁣⁣
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Why even bother? Because I have so many new stories about life at this stage that I want to share. And I want them to live in a space that’s warm and uncluttered and welcoming and easy to navigate. ⁣⁣
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So if you visit my blog and see a black hole, it’s because I’ve broken the internet. Sorry in advance. ⁣⁣
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Okay, back to it! I anticipate these updates and improvements will done by the time Avery graduates from high school. :) ⁣⁣
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#blogging #blogger #whattheHTML?? #codelikeamother #betterheader #thisistoohard ⁣⁣
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#parenting #familylife #IDD #intellectualordevelopmentaldisability #developmentaldisabilities ⁣⁣
#disability #advocate⁣⁣
#specialneeds #specializedneeds⁣⁣
#disabilitysupport #epilepsy #specialneedsmom #momgenes ⁣⁣
#unique #speechdelay #inclusion⁣⁣
#chromosomedisorder ⁣⁣
#3Pdeletion #9Pduplication⁣⁣
#foreverinmomgenes

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If you know this girlie today, you see her strength and resilience. It’s hard to imagine how fragile and sick she was as a baby. ⁣⁣
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Like many parents of medically and genetically complex children, we turned to doctors for help. We knew something was wrong, but didn’t know what to do. When the first doctor dismissed our concerns as dramatic postpartum nonsense, we looked to another doctor. I hadn’t thought about her in years. And then I saw her recommended as “an amazing doctor” in a Facebook post. ⁣⁣
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The glowing praise made her sound like the ideal paediatrician. Though if we’d taken her advice I don’t know if our daughter would be here today.⁣⁣
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I wrote about what happened on my blog. The link is in my bio. ⁣⁣
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Bottom line—advocate, question everything, get a second/third/fourth opinion, and always listen to your gut.⁣⁣
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#parenting #familylife #IDD #intellectualordevelopmentaldisability #developmentaldisabilities ⁣⁣
#disability #advocate⁣⁣
#specialneeds #specializedneeds⁣⁣
#disabilitysupport #epilepsy #specialneedsmom #momgenes #unique #inclusion⁣⁣
#chromosomedisorder ⁣⁣
#3Pdeletion #9Pduplication⁣⁣
#foreverinmomgenes

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Three members of the family lobbied to watch the new Star Wars series, “The Mandalorian” on Disney Plus (they downloaded the free trial). I wanted to watch The Crown season 3. I’m eating my words though. It’s so good. The character who makes an appearance at the end of the first episode is adorbs. Disney is smart. We may have to sign up now. Dang.

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My daughter sent this email from school just before lunch. The hot lunch that I totally forgot about and had to run over like a mad woman to get it there, late. Best mom in the world? Um, no. ⁣
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It’s funny how our kids see us though. They love us warts and all. (For the record, I do not have warts, but I wrote a story about them on my blog if you’re interested. Nice aside. LOL!) ⁣
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Anyway, I’ve been beating myself up lately about dropping the parenting ball. Lunches, when I actually remember to make them, haven’t been as creative or nutritious as they should be. As for dinners, there’s been more take-out and pizza than I care to admit. We’ve eaten often in front of the TV instead of together at the table. Family board game night has been replaced by “who wants to watch a movie?” Speech activities I’m supposed to be doing with my daughter have gone untouched for weeks. Same with the math and language exercises I need to do with her. I feel so much guilt about that. ⁣
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The best moms in the world do crafts with their kids after school and practice telling time and tying laces. My daughter still wears shoes that do up with velcro.⁣
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The biggest gut punch was our recent visit to the dentist. Both kids have cavities. I help Avery brush and we haven’t been flossing on the regular and now she has holes in her teeth. I feel sick about that.⁣
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So no, I don’t feel like the best mom in the world. Or even on my street. Ha. ⁣
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I feel pulled in so many directions right now. I’m not even sure why. But this email reminded me that my daughter loves me despite all the dropped balls. ⁣
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I’m not the best mom in the world, but my kids don’t see that. I know I can do better, but I’ll cut myself a bit of slack and try to have a really good weekend. Because “sometimes” we do. 😆 ⁣
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#parenting #momlife #momfail #specialneedsmom #adulting #pizzatonight? #truthbomb #reallife

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