Hurricane Sandy was a trial for all parents, but it was a particular burden for those whose children have special needs.
“By definition, kids on the spectrum are not usually go-with-the-flow kinds of kids,” said Dr. Rachel Busman, a clinical psychiatrist at the Child Mind Institute. “So having a lack of routine and structure can be difficult.”
Those parents took to the internet during the storm and its aftermath, sharing lists of organizations that specifically provide support for parents of children with disabilities, and posts with advice on how to calm kids feeling distraught or frightened.
There were calls for help, like a post on Facebook from Carol Greenberg whose son was struggling to get to and from his Brooklyn therapist:
Although he got home safe thanks to the kindness of neighbors... he almost got stuck in another Brooklyn neighborhood yesterday where he was finally getting therapy, because public transit there was still down, we're out of gas, and most gas stations weren't open as of yesterday. He & I are not registered for Access-a-Ride, because both of us have no mobility issues, and normally don't need para transit.I understand the MTA has procedures for a reason, but they seemed unwilling to consider bending those rules under these circumstance.[sic] If people with our resources are struggling to get our son to and from the services he needs, I can only imagine how much harder it is for people with fewer resources.
And there were stories.
On the International Business Times website, Maria Vultaggio wrote about her 21-year-old sister, Felicia, who has autism, and who finds it “virtually impossible to deal with change.” Explaining the lack of power to her adult sister was like trying to make an 18-month-old understand, Vultaggio said:
Nearly 80 people lost their lives because of Hurricane Sandy, and thousands are without power. People are waiting on three-hour gas lines just so they can cook a warm meal for their families.
But it’s also affected those with learning disabilities who can’t understand what has happened. It doesn’t take much to make Felicia happy, and now, the only things that keep her smiling are inaccessible; she's been constantly crying, and it's breaking our hearts.
The advice from experts like Busman has two parts. To get through the immediate crisis, recreate structure wherever possible, and build new ones where it is not. More long term, children must be reassured that their world, which they may see as upended, is still safe.
To that end, The Friendship Circle, a resource blog for parents and educators, offers “How To Prepare Your Special Needs Child For The Next Hurricane.” It includes advice specific to a population with disabilities: keeping orthotics and medication in a backpack or duffle bag; making sure noise sensitive children have soundproof headphones; and making sure those who respond to touch have things like silly putty or a fuzzy blanket.
But it also is useful to all parents, because, as Busman points out, “the needs of affected kids for comfort, structure and facts they can understand are also true for all kids. All adults, too.”
That is the loss in any crisis -- the comfort of routine. Knowing that a flick of a switch brings light, and the opening of the fridge means food, and bedtime is warm and safe. Not having to think about the things you didn’t realize you never think about. Everyone in Sandy’s path lost the sheer luxury of normalcy, and that is frightening not only to children with special needs or to children in particular, but to the children within us all.
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The Huffington Post is eager for insights from our community, especially people with experience in power, infrastructure and engineering, on the adequacy of emergency preparation in advance of Hurricane Sandy, and the degree to which past disasters have informed adequate planning and construction. Please send a note to sandytips@huffingtonpost.com with insights and suggestions for the important questions that need to be asked of relevant private sector and government officials, and point us toward stories that need to be pursued.