Category - Special Needs

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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
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Security Measures For Families With Young and/or Special Needs Children
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Ten Tips for Playdates With Kids of All Abilities
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Beware The Snapping Turtle
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When Your Child Is Shunned
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Independence: Aisle 4

Rare Chromosome Disorder Awareness Week

This unique celebration falls in early June every 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 all.   Avery’s[…]

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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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Ten Tips for Playdates With Kids of All Abilities

My daughter has a personalized CD from Name Your Tune that she just loves. She plays her favourite song “Oh How I Want To Go” over and over. Her brother always laughs at the last line saying, “Mum, that’s like SO inappropriate. They just called Avery special!” Ha. Well, she IS special. In many so ways. The song goes… “They tell me down at your house, it’s always so much fun. You laugh out loud and play a lot and skip and dance and run. Oh I just want to go to Avery’s house. Oh how I want to go… to this house I know… back to my special friend’s home.” Avery is a special friend who may have special needs, but this doesn’t mean she isn’t interested in socializing with her atypical peers. Just the opposite—this girl is one of the most social people I’ve ever met. For many parents, the idea of having a special kiddo to their house for a play date, can be a little scary. In the early days, I accompanied Avery to friend’s houses or to a party. If a parent is nervous, I’m always happy to do it. But honestly, parents don’t have to be[…]

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When Your Child Is Shunned

Conversations like these with my eight-year-old special girl make me want to scoop her up in my arms and then storm down to the playground, finger wagging, to kick some rude kid butt. Me: How was school today? Avery: Good. I made you a card. I did my letters.  Me: Who did you play with at recess? Avery: Katie and Susanna. But Katie say, “Go play with your own friends.” Me: What?! Avery: She say to me, “Go away.”  Me: Silence. Stewing. Blood pressure rising.  Me: So what did you do? Avery: I want to play with Susanna, but Katie say, “Play with your own friends.” Me: So who did you play with? Avery: I just walked around by myself. Avery adores Katie (not her real name). We’ve had her over to our house a lot. But things have changed. Katie who was new to the school last year and didn’t speak English, has friends now—friends she’s not willing to share. This isn’t a post about “mean girls.” It’s old news that kids can be little a-holes. It’s also a fact that kids who are different are often excluded. Different is not “cool” in elementary school. No, this isn’t anything[…]

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Independence: Aisle 4

Just look at the joy on this child’s face. She LIVES to shop, but the poor kid is saddled with a mother who detests shopping. However, I have to wear clothes (in public anyway) and feed my family, so shopping is a necessary chore. I’ve tried pawning it off on my spouse, but he can’t shop himself out of a paper (or plastic, or cloth reusable) bag. I sent him to the grocery store one morning for apple juice, bread, and milk and he came home with grapefruit juice (what kid drinks grapefruit juice??), bagels, almond milk, and a pie. Close, but yet so frightfully far. I’m coming to embrace the whole grocery delivery thing. I fought against it at first, concerned it would it cost more. Turns out I spend less since I don’t end up with $50 worth of impulse purchased potato chips, too good to pass up deals, and whatever else I might have a craving for in the moment. When I’m organized and on the ball, I plan ahead and get groceries delivered. Other times, I hit the supermarket so Avery can revel in her shopping happy place. She and I both push our own carts.[…]

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