1/17/2012

Ways to Deal with Important Appointments

Given the recent attention regarding Chrissy and Joe Rivera and their daughter Amelia, I thought it'd be good to look at ways we can protect our children and make sure we don't have to rely on memory alone when it comes to important appointments we have to attend in regards to our children.

Certainly, those of us who've attended IEP meetings know that it's recommended we record the meeting so that we have documentation of anything that was said in the meeting. And yet, I bet we don't all do that. I know I don't, even though I know my emotions will color my remembrance of the meeting.

We're fortunate with the girls that they are extremely healthy, but with Bobby we've been through some scary moments medically. One thing we as parents can do to make sure we understand and heard correctly what was said in a meeting or appointment is to record it to listen to later. We could also take notes.

Here's the thing: how many times have you been to the doctor and forgotten all the big words said almost immediately? If we don't know the terms, we don't speak the lingo, we can get lost quickly. This is one of the reasons it's so important to become as knowledgeable about our health conditions as possible, including the medications and tests involved with managing that condition.

As a diabetic, I need to know what the A1C is. I need to understand what the numbers mean on my glucometer and when I need to worry. I need to be familiar with any meds for the conditions, and what the possible side effects are. I need to know what can happen if I don't keep my blood sugar at normal levels.

As the mother to a child with Factor V Leiden, I need to know what that means, what to look out for, how to handle injuries, when to get him to the doctor, what complaints to pay special attention to. When he had his stroke at nine, he complained of a headache that we did not initially take seriously. You can bet we take his headaches seriously each and every time, that we keep an eye on cuts, bruises, that we look out for signs of a clot in his legs. You can bet that I take notes when we have to discuss his condition with a doctor, that I'm current on the research literature, that I have a clear idea of the potential risks of medications that can be used to prevent overclotting.

I'm not saying I started out getting all of this. I'm saying I learned it because of not getting it, not understanding the big words, the scary forecasts, the medical tests. And each time a new issue presents itself, I'm still back in that emotional jungle trying to make sense of the words I've just heard a doctor say.

We need to learn to back up, stop, breathe, ask again. We need to learn to record important meetings so that we can replay it over and over until we are sure we understand correctly, that we armed with the best information so that we can make the most informed decisions. In this way, we give ourselves the tools we need to navigate the uncharted territories we find ourselves in. We reduce our fear of the unknown and we spare ourselves potential misunderstandings. We give ourselves a measure of control over the situation. Information is power--and it's important that our information be accurate so that we don't use that power to make foolish, dangerous decisions.

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