CCDS Family Stories

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22Oct 2016

“Time” – Janet

spiro-jammies

“Time” – Janet

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

16Oct 2016

“Amazing Kids” – Nathan

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“Amazing Kids” – Nathan

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

30Sep 2016

“How this GAMT Dad Deals” – Jerry

beth-beach

“How this GAMT Dad Deals” – Jerry

I recently came across an organization that, when I took a look at their mission and what they based their mission on, really resonated with me.  They are called Suffer Better (sufferbetter.org), and their tagline is “give your all, and give back.”  It reaches out to endurance athletes who take on grueling training and events, and who also have a charitable side.  I myself have been testing my own resolve for years in endurance events.  But after reading about Suffer Better, I started to think deeply about what makes me keep going when it hurts.  The folks at Suffer Better ask followers to send them personal notes, and I decided to take the time to put down some of my thoughts.  Below is what I chose to share: Continue reading

20Sep 2016

“William’s Big School Journey” – Jess

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“William’s Big School Journey” – Jess

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

13Sep 2016

“Meet Max” – Mikelle

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“Meet Max” – Mikelle

Meet Max. Six years ago (almost seven), my life changed when he was born. He was my first child and the most amazing gift to me and my husband. When I was pregnant, everything seemed pretty normal. Clinically, the only thing that was wrong with my pregnancy was I had a single umbilical artery. It was not a major issue, except I had to have a few extra ultrasounds to ensure that the baby was developing and growing normally. In retrospect, I wonder if this was a symptom of the diagnosis we would receive a year and a half later.
Continue reading

09Sep 2016

“Those Who ‘Get It'” – Janet

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“Those Who ‘Get It'” – Janet

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

07Sep 2016

“Seasons” – Nathan

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“Seasons” – Nathan

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

28Aug 2016

“Blessed to Have Her Here” – Sarah

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“Blessed to Have Her Here” – Sarah

So this is my second post about Ella, who is 7 in a few weeks’ time! It’s scary how quickly they grow. In my last post I tried to keep to the point and just give you Ella’s background and how far she’s come. I thought this time I would say a bit about us and our relationship- how we manage day to day activities. Continue reading

19Aug 2016

“CTD in Everyday Terms” – Sean

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“CTD in Everyday Terms” – Sean

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

16Aug 2016

“Oops, Sorry!” – Jess

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“Oops, Sorry!” – Jess

Today I am writing about one of William’s favourite phrases – “Oops, sorry!”. He is 5 and has Creatine Transporter Deficiency (CTD). Continue reading