Tag - mom genes

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Letting Our Son Care For His Sibling With Special Needs
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You Want A Child With A Disability In Your Kid’s Class
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Because She Was
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Advice From A Special Needs Mom In The Middle
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Digital Tools To Help ALL Students Achieve Success
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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

Letting Our Son Care For His Sibling With Special Needs

Today was a Professional Development Day in our school district, so both my high schooler and middle schooler had the day off. Phew! The poor kids have been back at school for nine gruelling days. Time for a much-needed break.  I didn’t realize the kids would be home and I had a fitness class booked for that morning. A good friend was coming to try her first class and I didn’t want to miss it, so I decided to let my son look after his sister. He’s sixteen and more than mature enough to babysit for an hour. But I hesitated (understatement).  He’s fully capable. The cog in my helicopter parent propeller is the idea of putting so much responsibility on his shoulders, broad as they may be. If something serious should happen—a seizure, or choking, or a fall (all possible occurrences), it’s all on him. That’s a lot to put on a child. Okay, a man-child, but you know what I mean. I struggle with letting my son take control, letting them figure things out, and letting my daughter have a break from me breathing down her adorable neck.  Chances are high that absolutely nothing dramatic will happen. But it’s the[…]

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You Want A Child With A Disability In Your Kid’s Class

Every parent should hope there’s a student with a disability in their child’s class. Your response to this might be, “Obviously. Being exposed to differences will help my child develop compassion and empathy.” It’s a no-brainer, I agree. But not all parents feel the same. Earlier this week I sat on a bench at a playground watching my daughter. At first glance you wouldn’t know she has special needs. It’s not until you hear her speak that her differences are revealed. But while she was running with the other children she blended in and I remained undetected as the special needs mom. This is probably why the woman next to me spoke openly to her friend about her displeasure at having a “special ed kid” in her son’s class. She didn’t name the grade, but I’m assuming by scanning the playground that her kid is in fourth or fifth grade. She complained that this student was disruptive. She said it was unfair that he required so much of the teacher’s attention. I don’t know the classroom situation so I can’t comment on that except to say that yes, when a child has behavioural challenges, it can be tough for everyone involved. And now larger[…]

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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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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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Digital Tools To Help ALL Students Achieve Success

Recently someone tagged me on Twitter, attacking me for my lies relating to the current state of our school system. I was shocked, but then I laughed uproariously when I realized this outraged woman had confused me, Lisa Thornbury, with the Ontario Minister of Education, Lisa Thompson. As I respectfully corrected her mistake, several tweeps suggested I take the other Lisa T’s place. Well thank you, but I don’t certainly have the stomach or the thick skin required for politics. However, if I did assume the role of Minister of Education there are a number of things I would do. And undo. The list is lengthy, but I’d start by making education an actual priority and begin on the front lines by offering teachers much needed support. Have you ever volunteered in a classroom? Ever go on to field trip or do homework with your child? If so, you know that teaching is not for the faint of heart. But, it’s our goal as a society to equip students with the skills needed to become functional adults. So it’s a no-brainer that we need to support teachers in every way possible so they can teach.  So what do we do?[…]

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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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