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”
Tag Archives: autism
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”
Advocacy Day!
Today, Dan and I took a day off from work. It wasn’t to enjoy the nice weather, but seriously, we are having some amazing weather right now. It was for something much more important than that. Today, we and a group of our peers advocated for Fragile X Syndrome Funding for Research and Programs withContinue reading “Advocacy Day!”
Parent Empowerment Program
Today, Dan, myself and my mom begin the Blue Stars Therapy’s Parent Empowerment Program! We are very excited to have this opportunity to partake in such a great program. It is a 12 week course designed to provide us tools and strategies in our day to day with Jackson and help him down a positiveContinue reading “Parent Empowerment Program”
Autism Screening
In July 2019, we took Jackson to his Autism Screening. This appointment was slotted to last 3.5 hours. As a kiddo under 2 years old, having him cooperate for 3.5 hours seemed impossible, but he did incredible. The screening was all play based between him and his doctor. As a parent, it was the longestContinue reading “Autism Screening”
Our Fragile Xperience 