Of all the people that should be prepared for an unforeseen injury or illness, it should be me.
Two years ago, out of the blue, I had an intestine rupture and went into septic shock. To make a long story short, I spent three months in the hospital—a month on life support in ICU unable to talk, followed by another couple of months with a tracheotomy.
At the time, our child was 2 1/2 and hadn't yet been diagnosed with autism or epilepsy, but already had multiple health issues. Only I, my husband, and our child’s sitter knew how to feed him through his feeding tube. My husband had no clue as to the medications our son was on and barely knew the various doctors that we frequently visited.
Fast-forward twelve years. My son now has many issues that are more severe and is on several medications. I found myself thinking, “If something happened to me again, who would know what to do?”
This may sound rather pessimistic, but at the same time, I feel relieved knowing I am at least writing everything down somewhere, just in case the unthinkable happens.
A friend gave me a great idea that I am using. I have put together a binder and it has everything in it that would help anyone take care of Jac.
I have a basic history page with his diagnosis, doctors and their phone numbers, social security number, pharmacy information, and well, you get the idea. I have another page for all his medications, dosage, and exactly what they are for. I have a page for information regarding the programs he is on, such as CLASS, and a list of his case managers and their phone numbers. You can learn more about creating a care notebook on this website.
I keep a current copy of his school IEP and of course, that takes up half the binder. After putting this together, I feel better just knowing that I am prepared for my son's sake, as well as those that might have to try to take temporary care of him, if I were in a bind.
Our kids don't come with an instruction book but at least I can have a general outline for the important things!
Planning for the unexpected is so important for the care of your child. Learn how to plan in the event you are unable to care for your child.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.