Emergency preparation for kids with special needs (and nightmare scenarios)

When I go on a Max anxiety binge, as I do from time to time, I picture what would happen if there were a major emergency in our area (or in the entire country) and medical supplies ran low. Emergency preparation for kids is something a lot of parents think about, but when you have a kid with special needs, you think about it a whole lot more. You have to.

Max is on Trileptal (oxcarbazephine), to prevent seizures; without it, he'd surely have them regularly. This is how my nightmare goes:

Something awful happens—major earthquake, tornado, terrorism. Pharmacies run out of medicine. There is no Internet access, so I am not able to put out pleas for some. Soon, our supply of Trileptal is gone and Max has none left in his body to protect him from seizures.

My nightmare stops there, as it would be far too terrifying to imagine what could happen next. In reality, we have a five-month supply of Trileptal sitting in a kitchen cabinet. We have wills in place, with designated guardians (my sister and her husband). Dave's sister and her husband are good people, but that's about all the family we could count on. My mom's elderly. Dave's mother and her new spouse...ummm...I'll just heed that saying, "If you don't have anything nice to say, don't say anything at all."

With all the media reports that made it seem as if the world might end with Hurricane Irene, I had some Max anxiety. As it turns out, though, he wasn't effected. He eats a lot of cooked foods that go by the name of "spaghetti" and we got our power (and stovetop!) back on relatively quickly. I know that some kids with special needs can get wigged out by disrupted routines, but Max has been downright gleeful about sleeping in a motel. Therapists haven't been able to make it to the house because of closed roadways, but other than that, we're fine. No purple stuff was destroyed in the basement flood.

There's one major emergency prep thing I've been meaning to do. A few months ago, we went to a "Planning for the Future" seminar at Max's school. The presenter, who specializes in estate planning for kids with special needs, talked about having a "Letter of Intent"—a document that details all sorts of information about your child, in the case that both you and your spouse die and he is left with caregivers. The document had places to fill in doctor and therapist info, medical history, skill levels and more, an even a reminder to attach an IEP. It's on my (long) list of stuff to tackle; if you'd like me to email you a copy, just say so.

Ever have those disaster scenarios running through your head? What sort of preparations have you made for your kids in case of extreme emergency?

Photo/Chris.Violette