By Jayne Dixon Weber

First — take a deep breath and take the time to gather your thoughts on what you need to do. You have to appear calm, even if your mind is running a thousand miles an hour. What am I going to do with the children all day? How do I get supplies in the house? What if someone gets sick? What if I get sick? What about my work? And what if things fall apart at home?

(While I state child and children in this article, it is intended for children of all ages, even adults, in all the circumstances that are being disrupted at this time.)

Breathe in to a count of 6 — pause — exhale to a count of 6.

What am I going to do with the children all day?

he same thing you do every other day, except, at least initially, it will be more like a weekend day. Some of the strategies you use when you go on vacation can used here. Trust me, I know this is not a vacation.

I know this assumes you are or can stay home with your children. That part is covered later.

  • Take care of yourself first.
  • If you can, get up before your children to collect your thoughts and plan your day.
  • Be calm; let everyone know that things are going to be okay. If you’re anxious, your children will be anxious.
  • Be careful how much the children see on television and social media.
  • Know the symptoms of COVID-19.
  • Eat well, exercise, and get (plenty of) sleep.

Talk to your children. Explain what is happening in terms your children can understand.

There is a sickness going around and the schools want you to stay home so you don’t get sick.

Keep it short and simple.

Things might be a little different around here and I am going to need your help. We will do a little work and have a little fun throughout the day.

Here is a social story you might find helpful: The Coronavirus Free Printable (PDF).

And here are more ideas from the National Association of School Psychologists.

Create a schedule, with input from your children if you can. Make it visual. As much as you can, keep the same morning schedule you use for school or work, so that some things are familiar to the person with FXS. Use the schedule to develop a daily routine as much as possible.

Try to incorporate sensory activities throughout the day. Just because your children are home from school does not mean they cannot go outside. Get them moving. Think: heavy work, pushing and pulling, swinging, and rocking.

A sensory diet consists of activities used to attain and maintain appropriate arousal states throughout the day. Here is a link to information on a sensory diet; if possible, email and work with your child’s occupational therapist:

Use this time to teach a new skill — you can incorporate math and reading into most of these:

  • Start with hygiene: Wash, wash, wash those hands, before/after eating, after going to the bathroom, after being outside; you get the idea. Even if no one is affected in your area, it is a good time to get into the routine now. Remember, you have to do it for 20 seconds — the ABC song, the Happy Birthday song. Practice coughing, sneezing, blowing nose into a tissue – then throw the tissue away. Who can make the most realistic sounding sneeze is a good contest. No more high fives or knuckles! Practice elbow bumps, toe waves, hand waves, head nods — who can come up with the most fun/creative way to say hi without touching each other.
  • Laundry: Sorting, starting the washer/dryer, hang clothes on a (makeshift) clothesline, putting clothes away.
  • Dishes: Emptying the dishwasher — or forget the dishwasher and wash the (unbreakable) dishes by hand.
  • Cooking: Cooking simple items, like pretzels.

Be silly! Have fun!

Be a part of the solution.

Learn more about the INTERNATIONAL FRAGILE X PREMUTATION REGISTRY and join individuals with the premutation and their families to help advance — and encourage — deeper understanding and research into the premutation condition.

International Fragile X Premutation Registry
International Fragile X Premutation Registry

Be a part of the solution.

Learn more about the International Fragile X Premutation Registry and join individuals with the premutation and their families to help advance — and encourage — deeper understanding and research into the premutation condition.


How do I get supplies in the house?

This might be the time to order supplies/food online. For many grocers, the cost is minimal. You could go pick up the items — they will bring them to your car — or you can have them delivered.

Places like Target or Walmart will gather your list for you and meet you at your car.

That is not an option? Go to the store when the fewest people are there — I have found that to be early in the morning, the earlier the better.

If your child takes medications, call the pharmacy to see if they anticipate any difficulties getting your child’s medications. You might ask if you can get some kind of override to have extra medications on hand, should the supply chain be affected. Tell them you need a “vacation override.” 😉

What if someone gets sick? What if I get sick?

Call the doctor. Call before you go in.

Maybe you can do your visit or speak with the doctor on your computer — telehealth. This is a great time to start this practice, and just know that if your doctor thinks you should come in, you will be able to, but they will be ready for you.

If you have to go into the doctor, find out ahead of time what special steps you will need to take, and let your child know what to expect. Will he or she have to wear a mask? Sit in a separate room? Get to see the usual doctor?

What about my work?

That is going to vary widely from person-to-person, job-to-job. Everything from taking vacation to personal time off (PTO) to applying for Family and Medical Leave Act (FMLA). I hope you can get this to work for you and your family.

And what if things fall apart at home?

Like any breaks from school or changes in routines, there may be a time of transition to the new schedule and routine. Remember the mosey? Allow a little extra time — for everything, and move a little more slowly — for everything.

I think many of us hope for the best but plan for the worst. It doesn’t always work out as well as we hoped. I know you cannot always see a meltdown coming, but if you do, clear everyone from the room until your child settles. Just know that this may happen and have your plan in place.

I am happy to help anyone brainstorm ideas for your child or family, feel free to email me.

Bottom Line

This is easy for your children to understand.

Socially isolate. (The new term for the year.) This is harder. Here is one idea: Remember “Flat Stanley”? And if you don’t, you should get to know him. It is a children’s book about Stanley — a bulletin board fell on him and now he is flat. He could be your child’s new friend, and you could create your own book about their adventures (indoors) together. You do not have to buy the book — just look up what he is about here.

I want to hear your ideas!

Also, I know that many of you take care of a parent or grandparent and they are in the high-risk category for this virus. And if they are in a nursing or extended care home, you may not be allowed to visit. I know that some of you are in the high-risk category. We hope the virus works its way quickly across the country and the world, and that it has minimal impact on you and your family.

I know there are more aspects that I have not covered that are unique to your family. We are here to help in any way we can.

Breathe in to a count of 6 — pause — exhale to a count of 6.

You got this.


Jayne Dixon Weber, director of community services, NFXF

Jayne Dixon Weber
Jayne served as the NFXF director of community education (and other positions over the years) from 2007 to 2023. She has two adult children, a son with Fragile X syndrome and a daughter. Jayne is the author of Transitioning ‘Special’ Children into Elementary School, co-author of Fragile X Fred, and editor of Children with Fragile X Syndrome: A Parents’ Guide. Jayne likes to read, enjoys photography, and goes for a walk every day.


Let the Awareness Continue!

It looks like in many places we're back to wearing masks, or will be soon. Our family has pulled out all our favorite masks and getting used to them all over again.