Tag - special needs

1
Little Cough, Big Scare
2
The Time I Told My Child With Speech Delays To Stop Talking
3
My Child Has A Profound Speech Delay
4
Gymnastics At Home
5
Growing Pains
6
You Make Life Better—A Love Letter
7
Funkins…FTW!
8
I Made This Mess—Now It’s Time To Clean It Up
9
The School Parking Lot Makes Me Angry
10
Security Measures For Families With Young and/or Special Needs Children

Little Cough, Big Scare

  It started as a simple cough. Then simple turned into complicated. And we took one giant step backwards. “We’ve come so far,” I sobbed to my husband. “It’s unfair,” I cried into his shoulder. It took me years to quiet the fears after our daughter suffered her first and nearly fatal seizure. It took time and hard work to get back on track after that. But, eventually the PTSD faded into fleeting worries, and those worries began to quiet. Mostly. We finally had a taste of what family life is like without the fear. So this summer we ventured far and wide and high. We traveled by plane—up in the air for hours away from the possibility of medical assistance. We enjoyed a cabin high up in the mountains. We frolicked in lakes, camped, and canoed, paddling farther and farther away from access to help if we should need it. But guess what? I wasn’t worried. At all. Life was sweet—the sweetest and most fun it’s ever been for our family. Then the cough.  Our son got it first. Just a dry hacking cough, no other symptoms. A month later, near the very end of our family vacation in[…]

Read More

The Time I Told My Child With Speech Delays To Stop Talking

  Yesterday I posted a story about our daughter’s “profound” speech delay and you left such kind and supportive comments. It means a lot to my husband and I that people care so much. But it also makes me feel like a bit of a dick. Like my sharing/over-sharing about recent trials is an attempt at garnering sympathy or even worse, asking for a pat on the back for stellar parenting. I’m not a stellar parent. I’m just a parent who is crazy about her kids and wants the best for them. Pretty par for the course I’d say. We all want that for our children. We can’t even help it—it’s instinctual. A few people commented on how patient I am. Very lovely to say, but it made me laugh. If only they had seen me this morning… We were running late and I asked Avery to put on her socks. The first time I made eye contact, got her attention by saying her name, and spoke slowly and simply—”Avery, put on your socks.” She didn’t put on her socks. I found her a few minutes later playing with ‘Veterinarian Barbie’ so I asked, “Avery, what did I ask you[…]

Read More

My Child Has A Profound Speech Delay

 My parents say they’re grateful that our early home movies have no sound because….me. Blab, blab, blab. I’ve always been a chatty Kathy Lisa. I have a lot to say, but I listen too.   My son conversates just like me (real word even though Spellcheck is screaming “Can’t you see the red squiggly line??”). He starts talking from the time he rolls out of bed and continues asking questions and sharing ideas and jokes and facts and observations all. day. long. But he too knows how to listen. His big brown eyes open wide while I’ll telling him a story and he pauses before he speaks to make sure he really processes what’s been said. I love this boy. Our daughter, she has a lot to say tool. The trouble is her “talker gene” is broken. She knows what she wants to say, but struggles to get the words to line up in an orderly fashion to march them across her vocal chords and out to listening ears around her.   When Avery was a baby we were advised to teach her sign language as speech would not come easy. In fact, we were warned that she might never be[…]

Read More

Gymnastics At Home

It seems my daughter and Culture Club share a mutual fondness for tumbling. I spent countless hours of my childhood turning cartwheels and standing on my head. No iPads just “get outside and roll around on the lawn until dinner is ready!” Thirty-ish years later I’m more turnovers—of the apple variety—than walkovers, but my little girl is in the midst of full-on gymnastics adoration. Here’s a clip of her on the uneven bars. Okay fine, that’s Olga Korbut at the 1972 Olympics. But with practise Avery will get there. Minus that ‘Korbut Flip‘ on account of it being all holycrapcanyouevenbelievehowcraythatmoveis?! A few years ago we signed Avery up for her first session at Schlegel’s Gymnastics Centre. I shared a bit about that here: “Schlegel’s Gymnastics Centre Gave My Special Needs Daughter Exactly What She Needed.” This gymnastics centre serves all children, treating each equally, fairly and funly. Okay, funly isn’t a word but it should be. Just look at the smile on Avery’s face with coaches Andrea and Fiona. Pure. Happy. So with some gymnastics fundamentals under her belt and a love of the sport deeply embedded in her leo clad soul, Santa Clause decided to give Avery more of[…]

Read More

Growing Pains

When I say our daughter is our little girl, I mean to say that she’s our little girl and she’s a little girl. She’s been following her own curve on the growth chart since she was born—way down at the bottom, around the 3rd percentile. Sometimes lower. Her adult height has been predicted to be around the 5ft mark give or take. Our main concern when she was younger was always her weight. A bony baby who refuses to nurse or eat even the tiniest meal is not for the faint of heart. We worked extremely hard to put weight on her (it’s still a struggle most days), only narrowly avoiding G-tube surgery. There was no secret bullet, only patience, persistence and possibly a deal with the devil. With our focus on all things high fat, nutrition packed, appropriate texture, etc. we didn’t worry much about her height. Until recently. We were sent for a consultation with a pediatric endocrinologist upon the recommendation of our pediatric neurologist who had concerns about her overall growth. After a bone age test—a simple x-ray of the growth plate in one hand—we learned that Avery’s growth measures at age four (she is eight). She[…]

Read More

Funkins…FTW!

My daughter is beautiful, inside and outside. Though I have to say, sometimes her outside is a mess. At every meal she ends up with a ridiculous amount of food on her face. We have no idea how she doesn’t feel it. And if she is aware of the loaf of bread hanging from her lower lip, how does it not drive her nuts?! But alas, this is one of the many mysteries that make our Avery unique. Left to her own devices, she would go through a dozen paper napkins in one sitting—that’s a whole pile of unnecessary waste. We tried sending Avery to school with a pair of terrycloth wristbands to wear during lunch. Her occupational therapist gave us the idea, suggesting she use them to wipe her mouth. Good idea in theory, but she didn’t like the way they felt on her wrists and the experiment failed. Without the teacher or her EA facilitating, lunchtime is when Avery has an opportunity to interact with her peers independently. And though the kids at her table group graciously try to ignore the food on her chin, we are trying to teach her to get it together. 🙂 We recently[…]

Read More

I Made This Mess—Now It’s Time To Clean It Up

It’s not that I’m a “neat freak” exactly— I just prefer my environment (home, office, car, the world) to be orderly. Does this make me neurotic? Maybe, but my brain just functions better when the space around me is organized. Even as a kid, I made my bed every morning without being asked. I’m not talking hospital corners, but at the very least, the comforter was pulled smooth. Apart from some Barbies lying around or a few sweaters draped over my desk chair, my room was always well appointed. My brother was pretty tidy too.* And today, all grown up, his workshop is super organized—there is a place for everything. Labeled even. And don’t even get me started about his highly efficient laundry system. It’s a thing of beauty. We’re both giant weirdos, aren’t we? No response needed, thank you.  I really have no idea what our mom did to make us this way. She never nagged (not about tidying anyway… Hi mom!). We just knew that keeping our rooms neat was our responsibility, so we did it willingly and peacefully. So now that I have two children, I expect the same from them. Unreasonable? There are many who say,[…]

Read More

The School Parking Lot Makes Me Angry

The latest stressor in my life is not a big deal. I should be able to shake it off. Except, I can’t. It’s as they say, “the principle of the thing.” And the thing is the school parking lot. If you have school aged children you’ve probably witnessed a few parking lot scuffles. And if your school is overcrowded like ours, scuffles occur daily. Three hundred students over capacity (we have portables aplenty) means there are too many cars at drop off and pick up. People, especially those in a rush, get frustrated, tempers flare and some people seek short cuts. The staff at our school arranged for me and a few other parents whose children have E.A. support, to drop off and pick up in the staff parking lot. It’s quiet and there’s lots of room to safely pull up and park. We have to walk our children to the door and hand them off to the E.A. directly. Our children can’t walk to school. Avery can’t yet anyway. It’s too far and she’d be worn out by the time we got there. And our kids can’t get dropped off and left on their own to find their way[…]

Read More

Security Measures For Families With Young and/or Special Needs Children

Early this morning a 3-year-old boy went missing from his home in Toronto. Elijah was captured on his apartment building’s security cameras stepping out into the bitter cold at 4:20 a.m. He appeared to be on his own, wearing only a t-shirt, diaper and boots. His family discovered he was missing when they woke three hours later. He was found shortly after 10 a.m. only a few hundreds metres from his apartment and was taken to hospital in life threatening condition. Poor, poor baby. Why did he wake and decide to wander? Was he sleepwalking? Some children do. I did. My son had terrible night terrors as a toddler. Whatever the reason, it’s a horrible tragedy. This story has struck a chord with parents everywhere—our collective parental hearts go out to this family. Life will never be the same for them again. It also resonates with our family personally—as parents of a child with special needs who has a significant history of wandering off, silently, Elijah represents a legitimate fear for many special needs parents. When our daughter gained the ability to open doors, we immediately installed door alarms that chime when any door in our house is opened. We[…]

Read More

All images and text are copyright © 2019 Forever In Mom Genes