Today, I wanted to take the time to talk about Carter. While the blog is about our journey with Jackson and Fragile X, Carter plays a huge part in the journey. He is Jackson’s big brother, his best friend and his protector and he deserves to be recognized for all his awesomeness. Carter (4) andContinue reading “The Protector”
Category Archives: Fragile X
Parent Empowerment Program Update
Hey all, sorry we haven’t updated you on our progress with the Parent Empowerment Program in a while. Between quarantine life and both of us still working full time things are a little chaotic in our home as I am sure you all can relate! So, last Thursday we finished week 4 of 12 andContinue reading “Parent Empowerment Program Update”
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”
Quarantine – Therapy Resources
Hi all! First, I hope that you and your families are safe and healthy during these crazy times! I have been working from home the past 2 weeks now and while I love being able to wear leggings/yoga pants and sit on the patio with my laptop on a nice day I am definitely missingContinue reading “Quarantine – Therapy Resources”
Spread Kindness, Not Germs
I hope everyone is staying healthy and staying home, if at all possible right now. These are definitely crazy times. Within this past week of all hell breaking loose we have had to cancel Grandparents Day at school, cancel a year 4 olds birthday party, cancel a dental checkup, cancel a 4 year old WellContinue reading “Spread Kindness, Not Germs”
Genetic Testing
We recently had our monthly meeting with our Parents as Teachers provider and during our session I mentioned something that has been on my mind for months…”I feel like a pioneer in regards to children with Fragile X Syndrome and partial methylation.” Fragile X Syndrome is the leading known genetic cause of autism and intellectualContinue reading “Genetic Testing”
Ear Infections, Speech and of course, FRAXA!
Hey all, sorry I haven’t been posting! We had sick kiddos and then I had a business trip and well….life! So, let’s get to it! Unless you have a child with Fragile X, you might not know that Ear Infections are a thing. At one point, Jackson had 4 infections from November until February. HeContinue reading “Ear Infections, Speech and of course, FRAXA!”
Public School System Struggles
My entire life I was in a Private School, from a Lutheran Preschool to Catholic Grade School and High School, so trying to navigate the Public School System is a little overwhelming to me, but add in a child with Special Needs and my anxiety is now through the roof! One of the great thingsContinue reading “Public School System Struggles”
Not Skipping a Beat
When you have a child with special needs you want nothing more than to make them feel included and as “normal” as possible. As a parent and their advocate you push to ensure you do whatever you can to make that happen. Over the weekend, we started back at the Little Gym. Carter had previouslyContinue reading “Not Skipping a Beat”
Cincinnati Children’s Hospital Here We Come!
Hey all! I hope everyone enjoyed their holidays with friends and family. We survived all the craziness…barely, but it was a nice time to visit with everyone and catch up. Now that we are in the new year, we are eagerly awaiting our trip to Ohio and cannot wait to share with you everything weContinue reading “Cincinnati Children’s Hospital Here We Come!”
Our Fragile Xperience 