Category - disability

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Because She Was
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Rage Weeding
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Advice From A Special Needs Mom In The Middle
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IncludEd: All Learners Welcome
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Purple Day—Our Epilepsy Story
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How Amazon Alexa Helps With Speech Development
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Living With The Fear of SUDEP
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When Your Child Gets Stuck In A Verbal Loop
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The Shark Who Made My Daughter Feel Special
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Introducing Your Child With Special Needs To New Classmates

Because She Was

When I first met Shelley Brouwer on Instagram I felt her warmth instantly. She was genuinely interested in my daughter and happily cheered on each of Avery’s little victories. At the time I had no idea what Shelley had been through. Then one day she messaged me to say she had written a book about life with her daughter. She asked if she could send me a copy of Because She Was. I was hesitant to read it at first—through Shelley’s beautiful Instagram posts and blog, I’d already discovered the ending. I brought the book with me on a road trip and read it from cover to cover in a few short hours. I couldn’t put it down. As my husband drove and the kids were busy with tech and snacks in the backseat, I read and cried intermittently along with the windshield wipers. At one point my husband said cautiously, “Lis, I don’t know if you should be reading this…” He was worried because of the tears. And yes, parts of the story are heartbreaking, but I was completely drawn in. Shelley’s beautifully written story weaves forward and back in time, outlining the history of her family’s remarkable life. And though[…]

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Rage Weeding

We all have opinions. We also have the right to share those opinions—respectfully and thoughtfully. But isn’t it interesting that some people who have no idea what they’re talking about… let’s say about special needs or epilepsy or PTSD (since they have zero experience in these areas), still feel obliged to offer their advice, judgement, and criticism anyway? And when I say it’s “interesting” I’m being nice. When we share online (and I won’t stop sharing stories about my life, our daughter, or my family because I believe it’s important and often helpful… the medical stuff and the struggles and triumphs I mean, not so much the cat pics and ridiculous puns) we open ourselves up to negativity. But, it doesn’t mean we have to respond to it, or believe it, or accept it. Unless you’re walking the walk (whatever unique walk it might be) maybe take a minute before you make assumptions according to your inexperienced experience. We all have the right to feel the way we feel. You declaring otherwise, isn’t going to change that. Sometimes our fears or parenting methods stem from experiences you can’t possibly understand unless you’ve been there. On a positive note—the anger I felt about this[…]

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Advice From A Special Needs Mom In The Middle

If you were to divide your special needs parenting life into stages, they might be arranged from the day your child is diagnosed with differences, to the period when they reach adulthood and possibly independence, or the equivalent based on their abilities. Some parenting timelines might end before that. I can’t bear to think about that. I know parents who had a child leave this earth too soon, and though it’s painful to imagine, I have learned so much from them. Their stories about grief, and strength, and compassion, and courage have encouraged me to find gratitude through the difficult days.  I’m a mom currently somewhere in the middle.   I read this quote recently. I don’t know who wrote it originally, but I thank them for these words.  One day you will tell your story of what you’re going through now, and it will become part of someone else’s survival guide.    Sharing our unique family’s story helps me to process, celebrate, and make peace with what whatever we’re going through. And if it happens to help or comfort or even guide others who are following behind us, that’s even better. Here a few things that we’ve learned along the way;[…]

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IncludEd: All Learners Welcome

I was a teacher for ten years before my daughter was born. When she was diagnosed with a disability during my maternity leave, I retired from my job in education to stay home to care for her. I love telling people I’m a retired teacher. It’s fun to watch them try to work it out wondering, “How old IS she exactly?” For educators, diversity demands they provide inclusive, accessible learning environments that inspire confidence and encourage independence. As a former teacher, and now the parent of a child in the school system supported a special education resource team, I know how difficult it can be to ensure that every child is successful. These are difficult times in education. With larger class sizes and less support for children in need, teachers have more on their plates than ever before. We should be giving teachers every available tool to make their job as educators more effective. Logically, everyone benefits from this— teachers, students and their families, and society in general. Schools were established to help children grow into empowered adults. When we give teachers the proper tools, this becomes attainable. By providing accessible technologies, teachers can help students with disabilities unlock their[…]

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Purple Day—Our Epilepsy Story

When our daughter was eight months old she was diagnosed with a chromosome 3P deletion/duplication disorder. Doctors told us to expect some devastating things. Some came true, but thankfully most did not. The one thing they didn’t tell us to expect was seizures—those began when Avery turned three. We were caught completely by surprise.  One afternoon I put Avery down for her nap and when it seemed to last a little longer than usual, I went to check on her. When I stepped inside her room I knew something was wrong. There was vomit on her crib rails, she was blue, and she wasn’t breathing. I scooped her up, limp in my arms and called 911. I must’ve screamed because our son, who was six at the time, had come out from his room and was looking at me with the most fearful eyes.  I said, “Sebastian don’t be afraid, but in a few minutes some fireman are going to come through the door. They’ll help Avery.” I didn’t understand what was happening. I’d never seen her have a seizure. We didn’t know yet that she has epilepsy. I told our son to keep out of the way and that[…]

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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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Living With The Fear of SUDEP

SUDEP (sudden unexpected death in epilepsy) When a child in our community dies suddenly, the world closes in around us. Having to explain to our daughter that her ten-year-old friend died unexpectedly was hard. It’s tough enough to make sense of it as an adult. For a child, it’s incomprehensible. The sorrow we feel for this beautiful family goes beyond sympathy. We feel a level of empathy that only other epilepsy parents would know. When a child is lost to SUDEP all parents of children with epilepsy receive a jarring reminder that this can happen. No child is exempt.  We are devastated for the family. It hits close to home as we direct some of the shock inward by recalling our own children’s worst seizures. We relive the panic. We hear the ambulance sirens and repeat the silent prayers and promises to the almighty or whomever is listening to “Just please, please let her be okay.” When an otherwise healthy child dies without warning or explanation, it shakes us to the core. For me, post traumatic stress has brought up memories from our daughter’s first violent seizures at the age of three when we came very close to losing her. SUDEP—(sudden[…]

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When Your Child Gets Stuck In A Verbal Loop

I’m a pretty easygoing parent. I don’t yell. I almost never yell. I prefer slow smouldering jaw clenched whispered threats. They effectively scare both my kids and my husband. Fortunately, I don’t need to pull out the eye daggers often.  I’m pretty patient—especially when it comes to dealing with my daughter’s idiosyncrasies. If I feel annoyance creeping in I simply remind myself that she’s trying her best and whatever she’s doing, it isn’t intentional.  Like, she’s a very noisy eater. As a card carrying Misophonia sufferer, her lip smacking doesn’t bother me because I know she can’t help it. But God help my husband if he slurps a drink or smacks his lips. That’s a swift kick to the groin right there. My daughter asks a lot of questions and I try to answer every one. She tells endless knock-knock jokes and I always ask who’s there.  It can take a long time for her to complete a sentence. I patiently wait it out. Putting on her shoes or zipping up her coat can take ages. I wait without complaint, even if we’re late. Eating her dinner can take hours and I rarely lose it. But the one thing I struggle[…]

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The Shark Who Made My Daughter Feel Special

When my daughter joined a special abilities cheerleading team last year, I went online to learn more about cheer in general. My search led me to a reality show on Netflix about a Canadian cheerleading team. The show Cheer Squad is a behind-the-scenes look at the world champion Great White Sharks—practices, competitions, wins, losses, and backstories of some of the athletes.  Avery and I started watching together, but I didn’t expect to actually pay attention. I planned to passively watch while scrolling through Facebook.  However, I was quickly drawn into the show and with every episode I was more amazed by the skill and athleticism required in this sport. It’s a combination of dance, gymnastics, tumbling, and intricately choreographed and perfectly synchronized teamwork. The athletes literally hurl each other into the air and it’s hold-your-breath incredible. On the plane to Florida (Avery’s team competed in the World Cheerleading Championships at ESPN Disney this year) Avery spotted one of the athletes from the show. And not just anyone… her favourite cheerleader and absolute idol.  Rebecca Webster from the Great White Sharks was on our flight.  Avery pointed and whispered, “Mummy! Becca…” Avery desperately wanted to say hello so we slipped in behind her in the aisle.[…]

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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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