It’s been far too long since our last get-together and I hope everyone is doing well! Life has been a whirlwind for us, with Carter juggling two ice hockey teams and a roller hockey team, swim lessons for both boys, and our usual chaos that comes with daily life. Now we have added PSR andContinue reading “Catching Up and Reflecting on Life”
Author Archives: cdcjdc1617
Fragile X and Seizures
Hi All!! It has been too long and I truly apologize! Things have just been so crazy with life, work, and the Fragile X Resource Center of Missouri. The last time we were together I was telling you about Jackson starting school and our trip to visit EBK at Rush University…man that seems like agesContinue reading “Fragile X and Seizures”
Chicago Trip, Sentence Strips, Oh My!
I just looked at the last time I blogged and holy cow…things have been a little busy here! So, let’s get to it! From The end of July until September I was busy working on our Annual Fragile X Walk. Every year we hold a walk at a local park here in St. Louis toContinue reading “Chicago Trip, Sentence Strips, Oh My!”
Our Fragile Xperience Updates
If you were to sum up the month of July the only word I can think of is AMAZING! July is Fragile X Awareness month and we have been so busy spreading awareness, sharing Fragile X facts daily and advocating fiercely. Jackson started his Summer program at his new school and while we were absolutelyContinue reading “Our Fragile Xperience Updates”
Navigating Special Education in Public Schools
Today I wanted to share our experiences with navigating Special Education in our public school system in hopes to help others with what questions to ask the school and things to consider when filling out paperwork. Back in October, Jackson phased out of First Steps and rolled into the public school system. Based on hisContinue reading “Navigating Special Education in Public Schools”
FXS Potty Training @ 3 and a Professional Update
When we last got together we talked about different terms you might hear when you learn about Fragile X Syndrome. I wanted to throw some of those out there to set the stage for an update I am going to share. You always hear that you should not compare yourself to others, but it isContinue reading “FXS Potty Training @ 3 and a Professional Update”
Understanding Fragile X Terminology
Hi All! Today, I wanted to take sometime and talk through some of the different terms you hear when you talk about Fragile X Syndrome. When you get a diagnosis of Fragile X Syndrome, you are hit with a lot of emotions like uncertainty, helplessness, guilt, anger, sadness, confusion and the list goes on andContinue reading “Understanding Fragile X Terminology”
Dentist Appointment Update
Bright and early this morning we took Jackson to the Dental Anesthesia office to have him put under, so we could get dental x-rays and also fill two cavities on the backs of his upper front teeth. The staff was very friendly and talked us through everything. Dan and I went back with Jackson andContinue reading “Dentist Appointment Update”
Dentist Appointments
Tonight I am sitting here with Jackson soaking up all the happy moments he is having. Normally something sets him off for no apparent reason and head banging ensues, but tonight he has been in such a great mood from the time that I picked him up at school and I am loving every minuteContinue reading “Dentist Appointments”
Fragile X Spirit Week
Hi all! I hope everyone had a wonderful weekend! Our weekend was filled with sore arms from getting our first COVID Vaccine (YAY!), Ice Hockey and Baseball practice and mom and dad were lucky enough to have a date night thanks to Grandma and Grandpa! My last post was about our Advocacy Day with membersContinue reading “Fragile X Spirit Week”
Our Fragile Xperience 