Special Needs Archives - Page 8 of 22

Rare Chromosome Disorder Awareness Week

Jun 07 2015

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[…]

You Make Life Better—A Love Letter

Apr 23 2015

Mar 26 2015

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[…]

Feb 19 2015

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[…]

Jan 28 2015

One of the benefits of having a blog is being able to vent. I try not to hit “publish” on topics that are negative or mean spirited or just plain whiney. There’s already enough of that noise out there, I don’t want to add to it. So if you’re reading this, it would seem I found a nugget of positivity or a learning moment somewhere in here. Plus, how cute is this turtle picture? I just want to reach out and stroke him and say, “It’s okay scared turtle. Everything will be alright.” But then I remember…salmonella. So perhaps just soothing words of encouragement from a distance. Turtles may appear passive and even apathetic, but you should see them when they’re feeling amorous. The day we took the kids to “Reptilia” we got an eyeful. I tried to tell the kids that the turtles were just playing. True, if by “playing” we mean #turtleporn. I feel like a turtle some days. Not in a “Come back to my shell and party!” kind of way, but in a “retreat into my shell and hide” way. I’m not confrontational at all. I live in fear of hurting people’s feelings. I’ll often apologize[…]

Category - Special Needs

Rare Chromosome Disorder Awareness Week

You Make Life Better—A Love Letter

Breaking Free From Her Braces

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

Beware The Snapping Turtle