Tag - chromosome disorder

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Disability Awareness
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Rare Chromosome Disorder Awareness Week

Disability Awareness

The hashtag #disabilityawareness is a curious one. I mean, if you have a disability or love someone who does, you are well aware. But alas, making others aware is the point of such social campaigns. You might think you understand what it’s like living with an intellectual or physical disability. But, unless it’s your reality, you don’t know. Not truly. Last week was the “International Day of Persons with Disabilities.” It’s a day, primarily on the internet, created as a means to celebrate differences and to educate about life with disabilities. It’s also an opportunity to discuss what it means to be ableist. As the parent of a child with a disability, I’m learning to embrace the words disability and disabled. I’m of the “special needs mom” generation. But, it turns out you can teach an old dog new tricks. Yes, I referred to myself as an old dog in this scenario. Avery’s class honoured the day by each sharing a bit about their particular disabilities. Here is what my daughter proudly shared. While you’re here, I wrote this a few years ago about why disabilities are not “special needs.”

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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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