My Daughter Is Disabled. Could We Survive a Natural Disaster? – Kveller
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Special Needs

My Daughter Is Disabled. Could We Survive a Natural Disaster?

My husband and I have had our “go bags” packed for five years. We’ve discussed at length what we would do in an emergency situation, like an earthquake or a fire near our Southern Californian home. Up until recently, I felt fairly confident about our plans. But now, after Hurricane Harvey and Hurricane Irma, I’m not so sure.

The truth is, we are prepared to evacuate a typical family. But that’s not what we are.

My daughter has Rett Syndrome. She is medically complex. She is also smart, brave, strong, determined and playful. In a natural disaster, none of that matters though, except that she is disabled. She needs a lot more help than other kids her age.

Rett Syndrome has stolen her ability to speak; it has stolen her hand function. She has days she can walk well, and there are other days when her body doesn’t work and she collapses. She gets sick easily, so she is homeschooled. Her body temperature doesn’t regulate. Her breathing ranges from hyperventilating to breath holding. It’s all completely out of her control. She has seizures, so wherever she goes her emergency seizure medication goes with her. What happens to her in a disaster? How can I possibly plan for her in an evacuation, when some days it feels we barely make it through the day?

Which is why the hurricanes we just witnessed have me thinking about what an evacuation would actually look like for our family—and how we could best prepare ourselves. It’s incredibly daunting.

Medicines go first, so I’ve ordered extras for an evacuation bag. We can’t live without those. Her bracing and stroller go next. She won’t be able to walk far, and she’ll need her arm and hand braces to calm her body. Gluten free/dairy free snacks are must-takes as well. Because if nothing else, snacking will calm her nerves. Her vitamin regimen is what has helped ease her breathing struggles, so we wouldn’t be able to leave without that. Her communication device is a big, bulky and expensive computer with eye-gaze technology. She is completely non-verbal, and without that, she would be totally lost–that needs to come too.

We’d probably have to leave her activity chair, which gives her the support to sit. We would most likely have to leave all of the tools we use on a daily basis to help keep her sensory system in check. Those include her therapy brushes, which help her focus, headphones/earplugs, because the outside world is usually a few decimals too loud for her to adapt to–and her compression vests, which help regulate her body’s vestibular system and keep her calm. Hygiene would have to be figured out at wherever we evacuated to.

All that said, so far we are fortunate our daughter doesn’t require a feeding tube, as that would add a whole slew of other medically necessary contraptions and rations. She needs no dialysis or oxygen. She isn’t tied to a heart monitor or any heavy-duty medical machinery. But many families are dependent on all that, too, further complicating and imperiling a successful evacuation.

Before Harvey and Irma made landfall—and after, too— there were surely special-needs parents forced to make life-or-death decisions about what they could bring for their medically fragile kid, and what they’d have to leave behind.

It absolutely breaks my heart.

Every single day with a kid with special needs is a struggle to get them to be the best they can be. A day amid a hurricane presents a struggle just to keep them alive. Maybe that’s what gives me undue stress for those families, or maybe it’s because I realize, at any time, it could happen to mine.

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