Category - Special Needs

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Little Cough, Big Scare
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The Home Run That Made Me Cry
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The Time I Told My Child With Speech Delays To Stop Talking
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My Child Has A Profound Speech Delay
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Rare Chromosome Disorder Awareness Week
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Decisions—Growing Pains Update
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Growing Pains
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You Make Life Better—A Love Letter
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Breaking Free From Her Braces
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[…]

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The Home Run That Made Me Cry

Though I enjoy peanuts and popcorn and crackerjacks, (and a cute baseball hat), I stink at baseball. It’s probably why my softball team called me “No Depth Perception Lisa.” My nephew however is a talented player. He plays on a traveling rep team in the states. He’s a pitcher. And a bit of a belly itcher. But that’s only because of the mosquito bites. 🙂 Zach’s team finished the season on top. They take their sport seriously and practise hard. What’s as impressive as their dedication is the coaches’ commitment to teamwork and good sportsmanship. For extra practise and for the love of the sport, my brother Mike built a baseball diamond in their yard. (Yes, there were lots of “if they build it, they will come” jokes.) They hosted a party for the team while we were there visiting. The coaches wrote something inspirational about each player to share while they presented them with a ball signed by every player. I was touched by their passion for this sport. Well, not enough to actually play in the parent/kid game they had that night, but certainly enough to watch. The day of the big game, my nephew took his little[…]

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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[…]

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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[…]

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Rare Chromosome Disorder Awareness Week

This unique celebration falls on the week of June 7-13 this year. Is a rare chromosome deletion cause for celebration? I suppose it depends on how you look at it and how such a disorder affects you or someone you love. I hadn’t given much thought to chromosome disorders. I knew they existed, but I hadn’t delved much into their causes or various manifestations. When our second child was born, tiny but perfect, it didn’t occur to me that there could be something unusual lurking amid the tangle of her DNA. It wasn’t until our daughter was eight months old that concerns about her atypical development were confirmed. She had stopped feeding and was losing weight, there were some unusual physical traits, and the traditional milestones she was supposed to have achieved had not been met. After months of struggling to find help (doctors who saw Avery claimed she was fine and that we worried too much), the chromosome test results requested by our family doctor, our sole champion, came in. Avery was diagnosed with a rare chromosome disorder. And so there it was—our family’s new reality. Despite our suspicions, we were shocked and afraid, sad and confused by it[…]

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Decisions—Growing Pains Update

When I wrote about recent Growing Pains with our daughter so many of you jumped in to offer support, compassion and some kick ass advice. We all know it takes a village to raise a child, but it takes that same village to support a family who’s spinning in circles, not knowing what to do. Thank you village. Sincerely. We’ve stopped spinning. For now at least. We met with a wonderful pediatric endocrinologist yesterday at Sick Kids. I can’t say often enough how lucky we are to live just a short drive away from this world class children’s hospital. With the support of a wonderful doctor and her team, we have decided to put off Avery’s impending human growth hormone treatment for at least six months. Pheeeeeee-ew. We learned the injections are nothing to fear. After the learning curve, they will become just another part of our daily routine. I can live with this. It’s the fear of the C word that has temporarily stopped us in our tracks. Avery’s pituitary does not produce enough HGH. The answer to why is hidden somewhere deep within her unique genetic make-up. But also lurking there in the shadows are other unthinkable possibilities.[…]

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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[…]

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Breaking Free From Her Braces

As part of her genetic uniqueness, Avery had pervasive weakness in her core. There’s a name for it which escapes me right now. How wonderful is it that I can’t even remember some of her physical ailments because it’s been so long since they’ve resolved? The medical knowledge packed into my brain remains only as long as it’s necessary. Once the issue is no longer relevant, the dosages, protocols, scary science stuff, etc. fades away, presumably to make room for new, current information. Anyway, in addition to her low muscle tone aka hypotonia (I didn’t suddenly remember the term. I cheated and looked in her medical file) she also had weakness in her legs and ankles. Standing without support was impossible. Hypotonia is a persistent condition relating to the amount of tension or resistance to the stretch in a muscle. Those affected must compensate by developing overall muscle strength. After years of intensive physical therapy, which we called “Super Fun Gym Class” or “Baby Pilates”, Avery was able to stand. Then with the aid of leg braces, she was able to take her first steps. Her first orthotic devices went up to her knees. They were clunky and ugly and[…]

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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[…]

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