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”
Author Archives: cdcjdc1617
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!”
Mental Health and Wellbeing
Today I wanted to take some time to talk about things that people go through daly. Now, this isn’t just something that should resonate with parents of a child with special needs or parents of a typical developing child, but all people. My husband and I both work full time jobs. For me, I canContinue reading “Mental Health and Wellbeing”
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 Update
Day 1 Hey all, sorry it has taken so long to post updates. Upon leaving Ohio, Dan ended up sick, I have been recouping from an illness over the past month and Jackson has an ear infection…craziness! Anyway, let me get to it! Jackson participated in 2 development assessments and 1 play based assessment onContinue reading “Cincinnati Update”
Day 1 is done!
We have had a very busy day today at the Cincinnati Children’s Hospital. Jackson is doing a lot of assessments and tests that will further Fragile X Syndrome research and also give us more insight into his specific diagnosis. With Fragile X, there are things like methylation that play a part. For Jackson, he hasContinue reading “Day 1 is done!”
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!”
New Year, New Beginnings
2019 was such a crazy year for our family. We continued to push for answers on why Jackson was showing self harm behaviors and developmental delays, as we knew something was not right. We had so many different appointments to get these answers to finally get a diagnosis of Fragile X on August 5th. AContinue reading “New Year, New Beginnings”
Merry Christmas!!
Hey all, as the holidays are rapidly approaching, I wanted to take the time to share some insight. I don’t want this to come off as being rude or pushy. I want this to help inform others to something you might not familiar with when it comes to encountering a special needs child. **Full disclosure,Continue reading “Merry Christmas!!”
Our Fragile Xperience 