Looks like the wearing of face masks is here to stay for a while, so you may as well try to have some fun with it. I know, I know – they are not that fun. But, I did have a parent send me a link to a mask that has a chew cord as part of the mask. I just love how creative people are.
With the anxiety and hyperarousal seen in children with Fragile X syndrome, it is important to plan for emergency events at your child’s school – a fire in the building and severe weather events, such as a tornado, a hurricane, a local fire, a chemical spill, etc. Lockdowns are discussed separately. If at all possible, develop a plan ahead of time, ideally at your child's IEP. If that is not possible, ask for a meeting to discuss this first thing of the school year.
Like many of you, I will always remember the day and time when I received the diagnosis of our son, Ian. Fragile X syndrome – never heard of it. These are the lessons my family has learned since that time.
You know your child best so you want to set up services that work for your child. This might look overwhelming, but if you take it one step at a time, you’ll do great!
Getting to know your local firefighters can help you and your children with Fragile X syndrome in so many more ways than you think. Read about how to engage with them and how it will help your family.
Going to an IEP meeting was always an emotional experience for me. After a couple of years of meetings with a group of people—teachers, psychologists, administrators—who had obviously already made many decisions regarding my son ... I decided to make some changes.