By Marcia Braden
This is a time of uncertainty for us all. Your most important job as a parent, regardless of the age of your child, is to be calm and to create opportunities to model calmness. Remember how well people with Fragile X syndrome (FXS) read emotion, so your interaction is very powerful. Avoid having conversations about the news you have read or heard in earshot of your child. One of the things we know about people with FXS is that they learn a lot incidentally and prefer to attend to indirect communication.
Be honest with your child and if they ask you how long they are going to be out of school let them know what you have been told by your local districts. If you do not know an answer, let them know you do not know and that you will either research it or try to find out.
Keep a Schedule
It will be difficult for your child to fill the day, especially in areas that are essentially on “lockdown.” If you live in a mild climate, be sure to get your children outside and to exercise together. Exercise is good medicine for built-up anxiety. It will also be important to get your child engaged in a schedule. I am listing ideas of things you can add to a schedule based on age (see below). If your child is less impacted, modify the online lessons sent from the school.
You can better structure the day by interspersing workstations with tasks listed in the chart below. Allow for a task-by-task process, reinforcing with a token for each task completion. After earning five tokens, offer a reinforcer — even one that may be linked to devices. That is OK as a reinforcer, if they only have access to the reinforcer after earning it, the reinforcer will remain a motivator . So put the tablets, phones, Legos, or other fidgets in a box and allow access only after the contact (five tasks) have been completed.
Home Schedule Task Ideas — by Age
Below are templates for a social story and visual schedule. Please feel free to customize them for your own family.