Hurricane Sandy blew itself out a couple weeks ago, but the clean-up continues. Many people—special needs parents included—are assessing the preparations they made before the big storm and tweaking them for future hurricanes they hope will never come. New guest blogger, Kimberly Drew, wrote her first DifferentDream post while the storm was still raging. Read on to find out what she’s adding to her basic FEMA survival checklist so she can meet the needs of her daughter Abbey who lives with multiple disabilities including cerebral palsy, a seizure disorder, hearing loss, microcephaly, and oral dysphagia.

Surviving Hurricane Sandy without Power:
Help, Where’s the iPad!

I’m on borrowed time…gasoline, and power.  Hurricane Sandy has swept through our county and the state of New Jersey in a tree-crashing, flood-rising, power-stealing frenzy.  As I type I hear the loud hum of the generator my brother-in-law loaned us today.  The gas “full” line is dropping rapidly, and I realize that my time with power in the kitchen is limited.  I’m blessed to say that we’re safe and, compared to our neighbors about an hour away, we are only inconvenienced.

Hurricane Sandy Logical Preparations

As we were preparing for the storm, I was thinking about how my preparations are different than most. As a parent, you immediately think about what things you need to do in advance to take care of your children.  As a parent of a child with special needs, you immediately think about what you will need to do that is above and beyond what is recommended.

Hurricane Sandy Frustration Avoidance Preparations

I planned for water, food, and shelter with ease.  What I did not plan for was the frustration that comes with an interruption in routine and the lack of conventional entertainment.  To most, this would seem like an insignificant problem. But for our daughter Abbey, who has multiple disabilities, living without power has proved to be a frustration. She woke up this morning and, like many children with special needs, planned on our routine: hot oatmeal for breakfast, school, a signing video with music, lights. It wasn’t even that dark, but she kept pointing to the light switches and signing “on,” two seconds later, “on,” and again “on.” To add to this insult, we did not have hot water for her oatmeal. AHHHH, why didn’t I boil water and keep it in a carafe for the morning?? I’ll be adding that one to the list FOR SURE.  When she finally realized that this was not our typical morning, and she was not going to school, she immediately wanted to watch a movie. I said, “No” for what seemed like the hundredth time this morning, and it was just too much for her. She dropped to her knees and started to cry.

We were finally able to provide some comfort by getting her iPad out and pulling up the camera roll to flip through pictures. Because she uses it for speech, we have not added any extra apps to it. (This is something else I will change for next time. Some interactive apps for children, a movie, or free children’s books can all be deleted later.) However, just the swiping motion is a comfort for Abbey and her disposition changed immediately.

Additions to FEMA Survival Checklist

In addition to the basic FEMA survival checklist found on FEMA’s website, may I add:

• Think through your child’s routine and prepare to keep it as close to normal as possible.
• Charge EVERYTHING electronic (even though portable DVD players don’t seem like a priority)
• Download something new to your device of choice that will attract your child’s attention
• Limit frustration by PREPARING, PREPARING, PREPARING!

Hurricane Sandy Survivors: What Would You Add to Kimberly’s FEMA Survival Checkist?

Thanks, Kimberly, for sharing lessons learned by experience. How about the rest of you who survived Hurricane Sandy with kids with special needs? What would you add to Kimberly’s list? Leave a comment.

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