Tag - disability

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Why We’ve Chosen At Home Learning This Year—Our Interview With CBC
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How Early Intervention Helped Our Daughter Walk And Talk
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How Amazon Alexa Helps With Speech Development
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Introducing Your Child With Special Needs To New Classmates
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When Your Child’s Speech Delay Gets Worse

Why We’ve Chosen At Home Learning This Year—Our Interview With CBC

📷  Spencer Gallichan-Lowe/CBC Avery was on the 6 o’clock news last week. The title of the CBC news segment was, “Why some parents of kids with special needs are making the ‘heart-breaking’ choice of at-home learning.” You can read the full story on the CBC website HERE and the video segment that aired is below.  When the reporter called to talk to me about our decision to opt out of in person learning, I had a lot to say. When she asked if I’d appear on camera to elaborate, I agreed (even though I was in “active wear” and hadn’t washed my hair in um, awhile). The news van would be at our house in an hour so I scrambled to shower and find something to wear. As an aside, the camera really does add 20+ pounds, so high waisted pants that tie at the midriff, paired with a tight tank that belongs to your daughter is not the most flattering wardrobe choice. But I digress… As I got dressed, I braced myself for a difficult discussion. We had given ourselves a deadline of September 1st to tell our daughter she wouldn’t be attending school in person. I dreaded breaking this news to[…]

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How Early Intervention Helped Our Daughter Walk And Talk

Raising a child with intellectual or physical challenges is well, challenging. That’s why getting the support you need early on is crucial. Despite doctors telling us there was nothing wrong, we knew otherwise. Parents always know. We feel it in our gut. Mother’s instinct—it’s real and it’s powerful. Though her birth was unremarkable, when she was a few months old we started having concerns. Our already tiny baby girl was losing weight and the milestones that mark healthy development weren’t being achieved. True fear kicked in when our daughter stopped feeding. We were losing her and we fought to make doctors listen. By the time they did, our baby was in full “failure to thrive.” It was at this time, when Avery was eight months old and living full-time in the hospital, that we got a diagnosis. We heard the words, “Chromosomal Translocation Disorder” and “Rare Syndrome” and “We are so sorry.” We fed her through a nasal gastric tube and she began to gain weight and the colour came back to her cheeks. With her health and growth on track, we turned our attention to her development. What would a disorder like this mean for our child? What would[…]

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How Amazon Alexa Helps With Speech Development

When our daughter was a baby we were told she would likely be non-verbal. We used ASL with her from an early age. Slowly she gained sounds, then words, and then short simple sentences. She is still profoundly speech delayed, but is developing new words and phrases every day.  Speech therapy, activities and games that promote language development, and simply chatting with her every day casually modelling speech, have helped tremendously.  Smart technology is the latest helpful tool. Before I go into how much we’re loving our new family member, Alexa, let me start by admitting that I’m fundamentally against Google Home and Amazon Echo and all these smarty pant eavesdroppers. In fact, I’m so turned off by the invasion of privacy that I made my husband return the Google Home unit he bought me for Christmas. I made quite the stink about it, ranting about how they’re always listening and how wrong and insidious the whole thing is.  Flash forward to the week we spent at my brother’s house over New Years. They have an Alexa Echo and I fell for her, madly. This digital gal knows pretty much everything about anything. She can make life not only easier, but[…]

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Introducing Your Child With Special Needs To New Classmates

This school year we decided to introduce our daughter, who has special needs, to new classmates by way of a “Get To Know” Avery video.  It’s normal for kids to be curious about differences. Some kids approach Avery, respectfully. They can see there’s something different about her, but they treat her kindly anyway. Some kids shy away from her. Some ignore her or deliberately shut her out. And sometimes, but thankfully not as often, some kids make fun of her behind her back.  When we talk about Avery’s struggle with speech and explain why it’s difficult for her to form certain sounds, kids understand her challenges better and it makes them more comfortable around her. Also, when they know why she sometimes gets stuck in a repetitive verbal loop, repeating the same thing over and over, they’re less likely to feel frustrated with her because they know it’s not on purpose. She’s trying her best.  When kids are given Avery’s back story, and know that it’s okay to ask questions about Avery, the staring and stand-offish behaviour almost always stops. In fact, when kids understand her challenges, they treat Avery as just one of the gang. Actually, they are quite protective of her. […]

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When Your Child’s Speech Delay Gets Worse

We started learning American Sign Language as soon as we found out about our daughter’s genetic disorder—one that is almost always associated with severe speech issues. We relied on a variety of ASL resources, but a favourite (and the most fun) was a PBS show called Signing Time. A friend gave us the DVD set which we watched a hundred times. It’s no longer on television, but you can find it on You Tube.  As Avery started verbally saying words, and eventually longer more complicated sentences, sign language went to the wayside. She was talking with intelligible words and it was the sweetest sound.  Avery was eventually formally diagnosed with a profound speech delay. We weren’t surprised, but we were hopeful that with maturity and hard work, her speech would improve. And it did. For a little while.  Since then her speech has declined even more. Especially in the past few months. I tend to panic when I don’t know why things are happening. And for no clear reason.  The ideas are there—she knows what she wants to say and she wants to say it, but she struggles to get the words out. Like, really struggles. It’s hard to watch. Harder still, for me at[…]

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