CCDS Family Stories

“Traveling with Special Needs” – Randi

Everyday life with special needs children can be challenging. But one adjusts to the “new normal” and establishes a routine that works at home. When you add traveling to the mix it is a whole ‘nother mix of complications. My daughter thrives on routines, yet plane trips and overnight medical stays are just part of her reality (and mine!) How do we cope with these trips thrown in every few months? Here are several of the things that have helped us to have a more positive outcome. Continue reading

“Speed Doesn’t Matter, Forward Is Forward” – Shelly

If you read my previous post then you know we received our CTD diagnosis at 9 months old.  If you didn’t… well, now you know.  If you’re reading this post, odds are your child also has just gotten a diagnosis, and I know one of your biggest questions is “When will they hit this milestone? How far behind are they gonna be?” Well, I can give you the answer to that when you show me two identical purple snowflakes. Continue reading

“Happy Kid” – Laura

One of Levi’s greatest attributes is his positive attitude. Things really can’t get him down. This has been an interesting issue when it comes to discipline or consequences of negative actions. He really just rolls with it, gets through the unpleasant with a smile on his face, and otherwise loves everything this life has to offer him. Continue reading

“With a Little Help from My Friends” – Amy

Before we found out about Ben’s Creatine Transporter Deficiency (CTD) diagnosis, he was diagnosed with infantile scoliosis due to his hypotonia (which was a result of CTD, we later learned). Any diagnosis is two-pronged – you feel happy to have an answer to a mystery, and yet you have a diagnosis which presents many scary and helpless feelings. Continue reading

Our typical day and what our boys experience with CTD.

Continue reading

“The Power of Music” – Beth

“Have you ever had non-verbal students in your choir before?” I asked the junior high choir director a few months into Benny’s 7th-grade year. Without any hesitation, his director said that he had, in fact, had non-verbal students in the choir and it wasn’t an issue at all. Mr. W made it very clear that Benny is just as much a part of his choir as any other student. I will never forget how insistent he was about including my son. It turns out that music was the perfect choice for him. Continue reading

“Do We Have a Bad Neighbor?” – Janet

Happy 2018 everyone!! We live in Canada and have been dealing with a lot of cold weather and snow here. It’s been one cold winter!! So my CTD kiddo takes a bus to school. My other children walk the 10 minutes to their home school down the road, but my CTD kiddo gets a bus and goes about 20 minutes away from our home to attend a special needs class. Continue reading

“Grieving the Missed Milestones” – Regina

We’ve all been there. Those moments when we witness our kids- or grandkids- struggling to accomplish a simple task which others seem to be mastering. Those unique “am I making this up in my head” doubts that consume the mind while you wonder if you’re just being too vigilant (is there even such a thing). Or how about the feelings of despair as other families celebrate skills accomplished: cooing, the precious baby giggles, those first crawls, steps, words. The list goes on and on. Continue reading

“A Surprise Diagnosis” – Randi

Sonnet was six and a half years old when we adopted her in the summer of 2016. She weighed only thirty pounds and was deemed profoundly malnourished by our doctor. We had watched from afar as her condition deteriorated over a period of two years from a child who could stand holding onto an object to one who could barely sit up. Continue reading

“New Year, New Boy?!” – Laura

Hey everyone! I hope the new year is off to a great start!

Levi has been in first grade this year, and absolutely LOVES school!  I am so glad for that, although I always wonder and worry how he is doing academically, socially, and behaviorally.  He has an amazing teacher that has not let him slip between the cracks and has been in touch with me A LOT about his lack of focus in school. UGH!!  Continue reading