Winter 2003:Fragile X Emergency Kit

So,…were your holidays as insane as ours????? Oh the relatives!!! The food!!!! Have you ever eaten mincemeat pie? I thought it was a fanciful dish only written about in Charles Dicken’s novels. OY! And how many of you received fruitcakes? In Colorado we have the annual fruitcake toss… Tracy and I decided this would be a good “heavy work” activity during the holiday break for all those oversugared, hyperactive, and overstimulated children! So, please, get together with your friends and neighbors and initiate this fun, organizing, and useful activity! Fruitcakes are only available during the winter holidays, we are sorry to report. But the need for quick, portable and calming activities is ever present. So, instead of sending fruitcake with the kids to school this month, why not create a Fragile X Emergency Kit?

A WHAT???

Many enquiring minds have asked, “What is a Fragile X Emergency Kit?” You may remember that we alluded to this highly secretive device in the last Foundation Quarterly. The secret of the Fragile X Emergency Kit has been revealed to many who have attended one of the Foundation’s International Conferences. However, it is being shared in this forum for the members of the National Fragile X Foundation.

The Fragile X Emergency Kit is a customized set of calming and organizing accessories gathered in a portable fanny pack or backpack. The idea is to determine what accoutrements are needed for each of your kids; then to put them together in a kit, ready to go on all your errands, events and daily activities.

You never know when a Fragile X Emergency might hit. It could be on the way to the bathtub, the grocery store, a birthday party, or an outing at the park. You know the scenario. Overwhelm hits and WHAM!—your child is having a meltdown! If you are at home, chances are you can manage because you have a familiar environment with comfort items readily available. But when this strikes away from home… you are in a Fragile X Emergency!! In this situation, a Fragile X Emergency Kit is what you need!

Here are some ideas of what to pack. Remember; customize the kit to fit your child’s needs:

❍ Something for the mouth: When kids are little many won’t leave the house without a pacifier… sometimes even with an extra in tow. The need to suck is an early and important self-organizing strategy. The comfort of oral input remains for our whole lives, but a binky just won’t do past 2! So, what to do? Put great chewy items in your pack. These could include anything safe and attractive or of interest to your child. A fun straw or a water bottle with a long straw can be included.

The use of specific, intensive edibles is also useful in your kit. Bazooka Bubble Gum, Red Rope Licorice, Turkey jerky are some items that will stay relatively fresh in the pack. You can add apples or carrots if you have the time… but remember the kit needs to be ready to go with you on all your outings, at a moment’s notice.

❍ Something for the hands: Many kids find small fidget toys useful to have in their kit. The more resistive and sustaining the activity, the better. Toys such as “Klixx” or “Stretch Armstrong” are great! Some kids like mazes or small electronic games. Again, go with what your child likes. Ask your OT to help you choose more intensive versus less intensive sensory qualities.

❍ Something to provide pressure: Most of the kids we know do great with pressure input. Carry a small weighted lap pad in the kit. It makes it heavier to carry (good heavy work) and can be placed across the lap, on the head, or over a shoulder as needed. We often put a piece of stretch rubber tubing (therapy-tubing) or a bungee cord in the kit. This can be used to stretch and pull with the hands, or tied around the chair legs so the feet can hook into them and stretch and pull for heavy work in the legs. It can also be tied to the car clothes hanger and pulled on during a car ride.

Use your imagination, have fun coming up with your customized kits, and please send us your success stories and questions, c/o the NFXF, for next time!