Emergency Preparedness For Children With Special Needs That Follow A Therapeutic Diet

By Sybille Kraft Bellamy

When Hurricane Sandy hit the East Coast in 2012 we lost electricity for 5 days and were under a curfew for a week with limited access to our regular food sources of supply.

My son Max celebrated his 11 birthday with candles, a lot of candles! Candles were the main source of light in our kitchen. We used our generator for most of the day to recharge our laptop, phone, fridge, and to keep our furnace going.

We had known for days that our area would be in the storm’s path. We were not particularly concerned by the flooding because we are located on a hill, but we knew we might lose power and we did.

It made me realize how quickly life can change and disaster can strike. Sandy did not affect us too much. Max was safe in our house and I had enough food stored for him. Still, I became aware of how unprepared I was to cope with the needs of a child like Max if things had been worse. What if we had had to evacuate? Would I have had time to pack everything I needed for him: his rescue medication, his food, his clothes, and diapers? In the middle of a crisis, would I have remembered everything I needed to take along?

I decided I had to learn what it would take for me to be prepared. Here is what I have discovered and I would like to share it with you:

Our angels are extremely sensitive to stress; a new situation, a new environment, and a new routine can be challenging. If we had to evacuate for any reason it would be quick, with no warning, and most likely in a panic mode.

As a result, Max would be exposed to a different environment, to noise and light in a shelter, and to new people. Most likely he would also become sleep-deprived. I would not be able to prepare his usual meals and follow his special diet. All of these factors can trigger seizures, as we know.

Most of the time when a hurricane or a snowstorm hits you will receive a warning. But if an unpredictable natural or man-made disaster strikes you will have no time to plan and you will have to leave.

Every situation is different and each child may have different and very specific needs but here is a list of basic things you will need. Below you will also find a list of websites where you can get information to help you become better prepared.

Disaster Supplies Kit

A disaster supplies kit is a collection of basic items that could be needed in the event of a disaster. For our children with special needs, we need very specific things.

It is recommended to have the following:

•Medical alert tags or bracelets that identify the medical condition, i.e. name of the syndrome, epilepsy, allergies, glucose dextrose intolerance…

•A two-week medication supply ready for an eventual evacuation. A prescription with the patient’s name and his regular medication is also recommended

•A portable bottle if your child is on O2.

•Copy of personal documents (list of medications and any pertinent information)

•Your child’s special cup/bottle

•Water; one gallon per day. 3-day supply, 2-week supply for home.

•Non-perishable food. 3-day supply for evacuation, 2-week supply for home

•Cans of coconut milk/unsweetened condensed milk/whipping cream

•Peanut butter/nuts butter/coconut oil

•Individual electrolyte bags/baby formula/ketocal

•Cans of tuna/ sardines/lentils/beans