I would have never guessed in a million years that I would have a child who has CTD. I mean, who has even ever heard of it? I sure hadn’t. Not until the day we finally got in to see a geneticist. I still was skeptical. All these tests they were running, all the time you hear that it is a less than one percent chance that your child will have this or that, it would never happen to me right? Continue reading
Sometimes, as a parent you get sucked into the daily grind of routines and chaos. It’s life with kids. And this life and its fast-paced schedule zooms us ahead, one season quickly following the one before. It will always seem this way. I often hear the phrase, “I can’t believe it’s_______!” Insert whatever seasonal descriptive in the blank, and that is the common underlying tone of the world in which we live. Always rushing and looking ahead. I catch myself doing the same thing. But as a parent of 3 kiddos, and one with special needs, I’ve slowly realized the disservice I am doing when all I do is look ahead. Continue reading
Greetings again friends! I hope this post finds everyone well as we move headlong into the fall season. Last month I had the opportunity to celebrate Elijah’s ninth birthday. Such an awesome day had me reflecting how much this one little boy had been through in his short nine years on this crazy planet. Upon all this reflection I naturally started to think about our little guys Simon and Ezra, who will undoubtedly share the path that their big brother continues to blaze. Continue reading
My son William (5), has CTD, and started big school for the first time this year. William has always been very passive, largely due to his temperament but also his lack of physical mobility (walking etc.) and significant expressive communication delays. Our main concern was that he would get overwhelmed and lost in a large class at a mainstream school due to his developmental delays but he had demonstrated such an enthusiasm for learning during the previous year (since he started walking) that he wouldn’t be challenged enough at a Special School. Continue reading
My 7 year old son has CTD and Autism. He was diagnosed with CTD January 2012 and then Autism, September that same year. At 1 year of age his symptoms began to be quite evident. By 2 years old, they were in full swing. At 3 years old, when he received the Autism diagnosis, our lives had been literally turned upside down – shaken – and the contents of our ‘lives’ strewn about in our home, with only my husband and I to pick up the pieces and “carry on” with things. Continue reading
Well friends, the end of summer is again upon us. Children are heading back to school and hopefully, soon the cool air of fall will again give us respite from the stifling summer heat. In our family, three of our boys are returning to their studies after a few short months of summer vacation. Continue reading
I went to college with the intention of becoming a scientist. With that in mind, I studied biology and chemistry. While I never ended up becoming the scientist I planned, the knowledge has always proven useful to me. Never more so than when my son Xavier was diagnosed with CTD. Continue reading
Today I am writing about one of William’s favourite phrases – “Oops, sorry!”. He is 5 and has Creatine Transporter Deficiency (CTD). Continue reading
A couple of months ago, I was asked to write a blog about having a brother with CTD. I promptly dragged my feet in doing it. What was I supposed to write about? That it sucks? That’s not true. That it’s great? That’s not true either. With my first draft, I aimed to get to the real meat of what it was like, but it spiraled into such a David Lynchian hodgepodge of existentialism and frustration that there’s no way I could possibly show it to anyone let alone a blog on a charity website. Continue reading
My Creatine Transporter Deficiency journey began September 5th, 2009 with the birth of my son Spiro. Although I didn’t know it at the time, our whole family would be changed dramatically by this event. The birth of any child is life changing. But the birth of a child with special needs and medical requirements, has certainly been something I’ve taken a long time to digest so to speak. Continue reading
