Uncategorized – Our Fragile Xperience

Follow-up Post

Hi all! I received a lot of feedback from the last post, some were amazing words of encouragement, some were asking how could they help us or any special needs parents in these types of situations. I also wanted to let you know I emailed our school to express my concerns and they were veryContinue reading “Follow-up Post”

Progress in a Pandemic

Wow, it has been too long since we chatted! Things have been crazy around here, but there is nothing new about that. We had to have another quarantine for one of the kiddos due to a kiddo in his class testing positive. So, of course, between working our jobs and trying to entertain our oldest…weContinue reading “Progress in a Pandemic”

Let’s Talk About Rights

Hi all, I hope you are still safe and healthy as we rapidly approach the holidays and the end of what has been an interesting year, to say the least. I have debated on posting this for a while now, but after further considerations and hearing more and more comments, I found I could notContinue reading “Let’s Talk About Rights”

Special Education Assessment – Prayers Welcome!

Hi all! I hope you are all healthy and enjoying the last few weeks of Summer. As the school year begins, we are reminded that Jackson will be 3 this October and on his 3rd birthday he will be released from the First Steps Program, which is Missouri’s Early Intervention system that provides services toContinue reading “Special Education Assessment – Prayers Welcome!”

Growth in our Surroundings

There is something to be said for how our environment influences us. The instance I am referring to happened over the 4th of July Weekend. We decided to pack up the boys and take a road trip to visit our family in Minnesota. Before anyone jumps to conclusions or lashes out, we remained in ourContinue reading “Growth in our Surroundings”

Do You Want To Be Accepted?

I think we can all answer in some way, shape or form that we want to be accepted. We want to be accepted into a new company, a new school, a new group of friends, a new neighborhood, new church or religion, the list could go on and on. The other day I read aContinue reading “Do You Want To Be Accepted?”

Transition Assessment

Hi all! Hope you had a nice Memorial Day Weekend and are staying healthy. We spent the morning with the boys at Lone Elk Park, where they have lots of elk, deer and bison walking around the trails. We were lucky to see a lot of elk, some baby geese and even found a turtleContinue reading “Transition Assessment”

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”

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!”