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
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
| Elementary | Secondary |
|---|---|
| Sort objects: Use toys, Legos, blocks, pencils, etc. | Unload dishwasher and sort silverware. |
| Help get the paper, mail, and collect trash. | Sort laundry, office supplies, etc. |
| Help neighborhood shredder (neighbors leave stuff on the porch and the child gets it and shreds it). | Help with daily chores such as collecting and taking out trash, planting seeds in cartons to be planted later, or, if in a mild climate, plant a garden. |
| Cook: Make a snack, lunch, or dinner (simple snacks can follow a visual recipe). | Cook: Watch cooking channel and assist or make something from a recipe online. Find ingredients and measure out amounts for a recipe. |
| Feed pets, emptying packages created by other family members. | Take care of pets, animals. Package pet food into daily packages to be used by younger siblings. |
| Video movement activity like “Go Noodle.” | Do exercise: Take a walk, ride a bike, do wall push-ups. |
| Make a scrap book of favorite things found in the newspaper or magazine. | Use Google to find favorite pictures. Copy and add to favorites. |
| Put groceries into groups: frozen, canned, and fresh. | Match newspaper ads to grocery list. |
Templates
Below are templates for a social story and visual schedule. Please feel free to customize them for your own family.
AUTHOR
Marcia Braden, PhD, is a licensed psychologist with a clinical practice specializing in children and adolescents. She is a former teacher with experience teaching general and special education. She has written and published numerous articles related to education and behavior management strategies, techniques, and interventions. She is a contributing author to the book Fragile X Syndrome; Diagnosis, Treatment, and Research, compiled and edited by Randi and Paul Hagerman, and Children with Fragile X Syndrome: A Parent’s Guide, edited by Jayne Dixon Weber. She is the author of Fragile: Handle With Care : More About Fragile X Syndrome.
Dr. Braden is a member of the Scientific and Clinical Advisory Board to the National Fragile X Foundation and is a member of the Advisory Committee for the HillSprings Learning Center.
Dr. Braden frequently consults with parents, therapists, educators, and medical staff about effective treatments. Respected for her work internationally, she has presented at numerous conferences and workshops about Fragile X syndrome, autism, and other related disorders.
MORE COVID-19 RESOURCES
Survey: Share Your Experience With Telehealth and Services During COVID
Parents or caregivers of individuals with Fragile X syndrome who has received services via telehealth during the COVID-19 pandemic may be eligible to participate.
Telehealth Visits: Suggestions for Parents on How to Prepare
As the option to do telehealth visits opened up over the past six months, we have gathered information to help you make the most of your online visit for your child with Fragile X syndrome, whether they are a young child or an adult.
COVID-19 Check-In: Month 5
What can we do to take care of ourselves and to help others? A mother takes a step back to imagine what life during a pandemic looks like through the eyes of her son, who has Fragile X syndrome.
Getting Comfortable Wearing a Mask
Real-life tips from a mom, Jayne Dixon Weber, who’s already going through this with her own son, plus a a quick video from Rebecca Shaffer to guide you through the process of getting your child comfortable wearing a mask.