Archive - 2019

1
Letting Our Son Care For His Sibling With Special Needs
2
You Want A Child With A Disability In Your Kid’s Class
3
When Your Child’s First Pet Dies
4
Because She Was
5
Rage Weeding
6
Feeling My Age
7
Advice From A Special Needs Mom In The Middle
8
Digital Tools To Help ALL Students Achieve Success: IncludEd Part 2
9
IncludEd: All Learners Welcome
10
Purple Day—Our Epilepsy Story

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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When Your Child’s First Pet Dies

There are many life changing things about including a pet in your family. When you have a child with disabilities, pets can make a marked difference to their quality of life. Pets are more work in a “get off the couch and walk these ding dongs and change that litter and fill that food bowl…” sort of way, but I can’t imagine life without an animal by my side or under the covers. (Even though they should be in their crate. I know, I know…) The only true downside to pets, aside from mild annoyances like the occasional whining to go out for a pee at 5am, or fur on your favourite black yoga pants, is the ultimate downside which is of course the death of your best fur friend.  That’s the part that almost makes me never want to love an animal again. We become attached and they become family. Watching them go is hard. If you’re a pet person, you understand this completely.  Some losses are harder than others. When our guinea pig Ernie died from a seizure we were sad, but we’d had him less than a year and our connection wasn’t as deep as it was with other[…]

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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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Feeling My Age

I often hear other Generation Xers say things like, “I feel like a twenty year old in a forty-five year old body.” Or, “I feel like a kid inside.” I’ve said that. I’ve felt that. But not today. For whatever reason, I actually feel years older than my age.  Growing old is obviously a good thing, considering the alternative. I get that. But feeling old is an entirely different beast. A decrepit, dilapidated, creaking and croaking old bitch of a beast.  Maybe it’s seasonal allergies? It’s most definitely perimenopause… aka hormone-she-hell related. I’m also getting over a bug. Whatever the cause, I’m feeling tired, unfocused, unmotivated, and weak.  I’m a wilted shrivelled up flower. Which I’m probably allergic too ironically.  Here are a few things making me feel older than I am.  1. Reading glasses. I can’t read a thing without them now. I’m a slave to my specs, but I can never find the things when I need them. It’s been suggested I get a “granny chain” to suspend my readers from my neck.  2. Granny Chains, orthotics, iron pills, magnifying mirrors, sleep aids, root concealer spray, sensible shoes… I could keep going but just writing this list of devices and supplements has[…]

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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: IncludEd Part 2

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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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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