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
Female Power to Fight a Crisis — Presentation
Females living with Fragile X syndrome were asked to give advice to other females living with FXS on how to cope with this — or any future — crisis. Listen as Marcia talks through their advice and her own advice, built on decades of working with patients with Fragile X syndrome.
A COVID-19 Social Story from NFXF
The National Fragile X Foundation has created a social story to reflect the changing requirements that governments are enacting. There’s a lot of information — and misinformation — about COVID-19 out there, but there’s no doubt it’s impacted families in many, many ways.
How to Prepare for a Telehealth Visit
Drs Rebecca Shaffer and Ernie Pedapati tell you how to prepare for your telehealth visit, including behavioral checkups. They are with Fragile X Clinic at Cincinnati Children's Hospital. Their advice is applicable to all visits.
Supporting Your Child with Fragile X Syndrome During Special Times — Presentation
Barbara Haas-Givler shares her tips and methods for caregivers supporting children with Fragile X syndrome, starting with taking care of yourself first.