Category - disability

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Financial Assistance For Specialized Dental Needs
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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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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

Financial Assistance For Specialized Dental Needs

When I was a kid my teeth were a hot mess—think skinny jack-o-lantern with a spiral perm. So, thanks mum and dad for shelling out the big bucks to fix my janky buckteeth.  I knew early on that both of my children would also require orthodontics. My son’s teeth were an easy fix. One year of braces and his smile is now movie star quality.  My daughter on the other hand…  Her teeth were crowded and twisted and coming in at all kinds of wonky angles. Not only did she inherit my dental disaster genes, her own genetics added an additional yikes factor. She has a small jaw and a very high, misshapen palate.  One of her front adult middle teeth was angled out in such a way that one fall could easily knock it out. Our dentist recommended extractions and then follow up with an orthodontist for the first round of braces.  Both of my kids would be receiving orthodontic care at the same time—convenient in terms of double teaming appointments, but… cha-ching.  Our first task was finding the right orthodontist. We needed somebody who would be exceptional with a child with exceptional needs.  The story about the dentist who terrified my daughter[…]

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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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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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