I have experience both at home and at work with the unique responses that children with special health care needs have. Rapidly changing situations like those in an emergency are especially difficult to process and manage.
My 11-year old daughter, Jasmyn, has bilateral hearing loss as well as other disabilities. In the event of an emergency or troubling situation, she would react very emotionally. This means that Jasmyn would probably sob continuously. In a situation where I or another family member or close friend were not present, she would be even more emotional. If a response team were to approach her, she might find someone to latch onto. She would then cling and stay glued to their side no matter what. It is important for emergency personnel to understand this and have lots of patience and sensitivity.
Once calmed down, Jasmyn would ask lots of questions about whatever caught her attention first. The questions would be repeated even if she receives answers. Our family hasn't yet figured out a consistent method that works when Jasymn asks repeated questions. Sometimes just repeating the answer a few times and telling her that we are moving on to a new topic works. This would not necessarily be effective if she was in sensory overload. I think the repeated questions are a form of comfort/OCD tendency. Patience and reassurance is what a responder would need.
I’m glad that Smart911 exists to serve families. I think it’s important that response teams have certain information in advance. That could make all the difference in rendering effective, efficient care.
I know and work with other families who have children with special health care needs and/or disabilities and have special concerns for their children in the event of any emergency. Family Voices of TN is hosting a conference in Nashville on Emergency Preparedness on March 31, 2012 where we will talk about strategies, in addition to Smart911, that families can use to ready themselves and their children for the unexpected.
For more information about Family Voices and our Emergency Preparedness Conference, please visit us online at: www.tndisability.org/familyvoices.
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