CTD

15Jun 2018

“That Friend” – Shelly

I feel like all us parents of special need kiddos have that one person who is our main go-to.  Who we all wonder why the heck they choose to be involved in our lives but are so extremely happy they stay.  This post is going to be a little different because I’m pretty much just going to shout out to our friend.  But I feel like you guys will relate because I know you guys have this Friend in your life too… Continue reading

30May 2018

“Realignment” – Nathan

Good day again readers! I hope everyone has been enjoying the warmer days and (hopefully) sunny weather.  If you caught my last post, I discussed the expectations that my wife and I have for our boys with CTD and how those expectations or goals have changed over time.  As I finished writing that post, it kept coming back to me that the boys aren’t the only ones who we had expectations for that required some level of realignment. Continue reading

23May 2018

“Perseveration of Speech” – Janet

Hi everyone out there! I hope everyone is doing great. Just to fill you in on our family, we have 4 kiddos, 1 of them has CTD and Autism. We have had a rough go lately it seems with our son and his language. Our son Spiro has a huge vocabulary I would admit for someone presenting with CTD. We can talk to him. He can answer us. He comments on situations around him. It’s not always correct or sounds right but it’s there and we are happy with where he is at as far as speech goes. Continue reading

14May 2018

“The Advocate, The Meanie, The Mom…” – Regina

My oldest child, Chelsi, my first born, my 18th birthday present, and my graduation gift all bundled into my arms forever changed my life. Ok, Ok! A baby having a baby…there….I said what society said.  For those unaware, Chelsi is the mother of Caiden. We have a dual CTD diagnosis that was discovered in the process of diagnosing Caiden. As Grammy and Grampa-pa, we co-parent Caiden. Continue reading

12Apr 2018

“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

29Mar 2018

“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

21Mar 2018

“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

27Feb 2018

“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

25Feb 2018

Caiden doing physical therapy

“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