I am the proud Mother of 2 adult boys affected with Fragile X Syndrome. Subsequent to their original diagnosis, they have both also been diagnosed with Autism, and one with OCD (Obsessive-Compulsive Disorder). I decided to create a blog as a way to share experiences with other families, as well as, hopefully, help educate parents on some methods that have helped us cope throughout our boys' lives.
Jake is now 20 years old. He was diagnosed with Fragile X Syndrome when he was 2.5 years old. Over his lifetime, we have experienced behavior problems, perseverative speech as well as numerous sensory issues. He currently has a high quality of life, is able to care for himself with some assistance, and volunteers at several jobs during his week. He enjoys most of all his "Mister Rogers' Neighborhood" videos (hence the name of the blog), and seeing movies at the theatre as well as many other life-enhancing activities.
Joe is 18 years old. Joe was diagnosed with Fragile X Syndrome when he was just an infant. Over his lifetime, we have experienced severe behavioral issues, tantrums, multiple sensory issues, lack of communication, and severe anxiety. Joe lives a high quality of life, despite his current and past challenges, and is able to care for himself with some assistance. He enjoys 2 volunteer jobs during his week and rides a community bus independently. Joe loves movies too, and hanging out with his Dad.
Throughout the course of this blog, it is my hope that I can share some of the specific methods we have used to get to the point where we are now. It has not been easy. We've had days filled with tears, anger, sadness, as well as joy. I hope to develop a sort of resource area for specific ideas used to overcome specific challenges. We'll get started and see how it goes! Please be patient as I begin to set this site up. Check back periodically!