Category - Special Needs

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Dear Parent Of A Newly Diagnosed Child…
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The Special Needs Parenting Sweet Spot
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Why This Mama Bird Ain’t Happy About Back-To-School
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I Didn’t Expect To Feel Like This When She Turned Ten
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Cooking With Kids With Special Needs
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Parenting Exposed (literally)
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Waiting Room Worries
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Small Kids, Big Worries
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Tiny Dancer
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Family Films and Fun: 2016 TIFF Kids International Film Festival AND digiPlaySpace

Dear Parent Of A Newly Diagnosed Child…

The early days when you suspect something might be wrong with your child completely suck. Literally—the fear and worry sucks the life out of you to the point where you wonder if you have the strength to actually go on. But the day you hear the words, the actual diagnosis, is the worst day. It’s indescribably (though I’ll try) horrendous.  When we got the phone call that confirmed our daughter has a chromosomal disorder I was dumbstruck. I couldn’t make sense of  what was happening. There was a loud ringing in my ears that made it hard to think. I fled outside and gasped for air. I couldn’t breathe. I eventually came back in and sat quietly on the couch beside my husband and we cried.  A few months later our daughter ended up in hospital which is a despicable story in itself (doctors are wonderful people, but they don’t always see what you see. When a medical professional tells you that it’s all in your head, listen to your gut and do what needs to be done.) This is when further genetic testing revealed the extent of our child’s chromosomal deletion/duplication. The first few weeks with this new knowledge[…]

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The Special Needs Parenting Sweet Spot

It’s a struggle to stay rooted in the present. Memories of traumatic moments from the past seep in and thoughts of what “could” happen trickle through the cracks. These leaks can start to erode the “special needs parenting sweet spot.”  “Be mindful!” I remind myself constantly. “All the good stuff is happening now! If you don’t open your eyes and breathe, you’ll miss it.”  Sitting sandwiched between two conversations at my daughter’s adaptive soccer league last week I felt like my happy place was put in peril. As I sat on a cold metal bench watching wildly enthusiastic kids chase after soccer balls followed closely by their volunteer partners. I couldn’t help but hear the two conversations happening separately on either side of me.  One pair talked about their young children recently diagnosed with complicated disorders. The fear, the confusion, the anxiety—I remember it well. The “beginning” is a unique kind of difficult. So many questions, so much anxiety—parents reaching out in desperation to anyone who might have answers, or at the very least offer some guidance.  My stomach clenched as I listened to the despair in their voices. Though my compassion was overshadowed by my relief in having escaped the early[…]

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Why This Mama Bird Ain’t Happy About Back-To-School

A friend posted a question on Facebook asking, “Are you happy or sad about your kids going back to school?” The majority of responses were something like, “It’s been fun but I want my routine back!”  My sad face emoticon response was in the minority. I am not excited about my kids heading back to school in the least.  That might make me sound all, “Oooooh, I’m such a wonderful mother. I enjoy every single second with my perfect children, crafting and baking wholesome snacks, and exploring nature on our many hikes and adventures. Hashtag…. #blessed” As if. The last thing I hiked up was my skirt at the waterpark.  Me lamenting my kids return to school doesn’t make me some kind of earnest earth mother who savours each second with her spawn. Of course I savour some seconds, but not all of them. Some seconds/minutes/hours are loud and clingy and annoying and totally cut into my highly coveted “me time.”  Admittedly, I’ve had it easy. My husband is a teacher, off for the summer. I always have an extra set of hands. I’d be singing a vastly different tune if I was home alone with my kids for sixty-eight days straight. […]

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I Didn’t Expect To Feel Like This When She Turned Ten

As her tenth birthday approached, I felt on edge. Normally the prospect of a celebration has me excited—party planning, baking buying a cake, and wrapping gifts are generally joyful. But instead of joy, I felt dread.  It wasn’t until after her party, when it was quiet and I was alone pouring over images of my daughter as a baby, a toddler, a school girl, right up until photos taken that morning of the amazing ten year old person she has become, that it all came out in a rush of emotions I didn’t expect.  I was choosing photos for a video to document our daughter’s first decade of life. You can watch it below if you feel inclined. I know, it’s kind of like me saying,”Hey, wanna watch slides of our vacation to the Grand Canyon?” And then forcing you to sit through two hours of photos of my family posing in front of various rock formations. Except, this video is only two minutes long and it’s worth watching if only for the song. God I love this song. Milestone birthdays—there’s obviously a lot of nostalgia that go along with watching your child grow up…and away. As babies, they clung to us. They[…]

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Cooking With Kids With Special Needs

I took Home Ec in high school. Didn’t you? I learned to sew (a little… I made lopsided pillows and a hideously blinding canary yellow duffle bag). I also learned the basics of cooking. We baked tea biscuits, made lentil soup, learned how to cook rice, and even made a pie from scratch. We put together a bunch of other dishes I can no longer remember, but the principles stuck. The other night my son asked how I knew how to make a roux (the base for the sauce in our mac and cheese) and I told him, “My grade nine Home Ec teacher taught me.” He was shocked I could remember that far back and also that he had never heard of this “Home Economics” thing. I told him it was easy to remember since my teacher was hard to forget. She cut her thumb during one lesson and nearly fainted before she was rushed to hospital. Another time she set one of the ovens on fire and we had to be evacuated. I found her antics hilarious and as a result, I got sent to the office more than once. Not cool I know. Even less cool since[…]

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Parenting Exposed (literally)

Parenting makes us vulnerable. We expose parts of ourselves we never imagined we would – emotionally and in some cases, physically. Something happened several years ago that I’ve only shared with a select few. I feel like now is a good time to dust off the details and share it out loud because I can laugh about it now.  Back in the summer of 2011 when my daughter was a spunky five-year-old, we were invited to attend a big outdoor children’s event. I didn’t want to go. It was difficult taking my daughter out back then. She’s a precocious kiddo whose physical and cognitive delays make it tough to rein her in sometimes. But my son who was obsessed with lizards at the time was desperate to see the reptile show at the party. His needs frequently come second to his sister’s—which is often the case of siblings of kids with special needs. He was so looking forward to holding a Bearded Dragon, how could I deny him that (creepy) pleasure?  We were at the event less than five minutes when Avery stuck a sponge covered in green paint in her mouth, picked up a pile of goose poop in her[…]

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Waiting Room Worries

My husband and I have sat in many waiting rooms over the past few years, anxiously awaiting news. It’s scary, and nerve wracking, and lonely—your basic trifecta of darkness.  But thankfully and luckily and gratefully (your basic trifecta of good fortune) our children’s surgeries have gone well. Yes, I said children.  I rarely write about our developmentally typical boy child. He’s a full-on teen now and his stories are his stories to tell. But recently he had to have surgery. He’s the kid we don’t have to worry about or fill out complicated medical waivers for. I actually said something to that effect not long ago so apparently I jinxed it. Anyway, it was fine. He is fine. I asked him if I can share a bit about it at some point because we learned some things from this experience that I know other parents can benefit from. He said, “Sure,” with a shrug. So I’ll get to it one of these days.  But back to the undisputed star of this blog—our developmentally atypical girl child. She has several surgeries under her belt—none as serious as some of the ones friends’ children have gone through. But, there have been risks and[…]

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Small Kids, Big Worries

Anxiety is a pain. Whether we come by it genetically or situationally, it hits all of us at various times in our lives. I’ve written about my struggle with worry—as a parent of a child with a variety of medical issues, I worried about our girl a lot. I looked too far ahead and fretted about the what ifs. I couldn’t stop the catastrophizing.  When you live in the past or in the future, you miss the present, and that’s where all good stuff happens. So I did the cognitive behavioural therapy exercises and it made a world of difference. Don’t get me wrong, I still have moments where I freak the hell out, but I know how to reign it in. This whole being mindful thing is a work in progress.  Adults coping with anxiety is one thing, but what about children with anxiety? Watching your child worry is like being poked in the stomach with a sharp stick.  I’ll unabashedly tell you about my battle with my worry monster, but sharing someone else’s story is offside. But I can say that having a sibling with disabilities can create fear and anxiety for good reason. Watching your sibling choke and[…]

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Tiny Dancer

My daughter is a dancer. Yes, she mixes up the steps and goes in the wrong direction at least half the time, but she doesn’t care one bit. She gets distracted and stops mid-step to wave to me or to watch herself in the mirror. And sometimes she trips and falls, but she always gets back up, smiling. She loves to dance. And lucky for us, she can.  We had been at another dance studio, but out of the blue the owners decided that a class for students with special needs was too time consuming, too much work, just too much effort. It reminds me of this story. So our tiny dancers were displaced and disillusioned.  But we’ve fallen back in step and been welcomed with open arms at our new studio.  Avery’s dance teacher is warmth and encouragement and inspiration. Miss Stephanie treats her special students the way treats all of her dancers. She pushes just enough and cheers them on. She’s choreographed the most wonderful dance for the girls to perform at the spring showcase—on the big stage in pink sparkly costumes, with grown up hair and fancy make-up. They’ll be dancing to Superstar by Love Inc—a perfect anthem[…]

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Family Films and Fun: 2016 TIFF Kids International Film Festival AND digiPlaySpace

I think I may have given birth to the next George Lucas. My son has been making videos since he was little. #toddlersandtripods From early on he’s scripted mini movies, created stop motion animation and made documentary style shorts about topics he cares about like animals and basketball and Star Wars. His films have become more complex and creative. For now it’s a hobby, but perhaps it will turn into a life passion? C’mon kid—mama wants to rub elbows with Tina Fey and her squad. When we were invited to preview this year’s digiPlaySpace my son actually passed on a basketball game so he could come along. He has big hoop dreams, so this was clearly something that piqued his interest. If you live in the GTA and have children in the 3-13 age range, The 2016 TIFF Kids International Film Festival and digiPlaySpace are a must-see-must-do! I had no idea all of this family-centered entertainment was right in my back yard. If you’ve never been, here’s the scoop: The TIFF Kids Film Festival will be presenting 139 films from 35 countries. All the screenings and events take place at TIFF Bell Lightbox in Toronto, April 8 to 24, 2016.[…]

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