I was clicking away on the one pharmacy site two weeks ago as I was making appointments for Elizabeth and me to get the updated COVID booster. With the rational that she works in 3 schools and at her job helping with catering parties.

So, my thinking is that her exposure is there, the virus is still here….let’s get boosted and then she is better protected as she caught COVID last Spring…

I get off the computer, grab the printed appointment reminders and go to TELL her about her appointment when it kind of dawns on me that, at the age she is, which is 25 years old, should I really be TELLING her about her appointment, or should we have TALKED about it, and she could have had a say in the process?

The answer hit me on my way up the steps and it was the talking one.

I think it is easy for me and maybe you to just do the things that need done for our children, then young adults, then adults because it is, let’s face it, easier! and we are in the habit of doing it. And it kind of gets done the things that kind of need to get done. Our life gets crazy, busy and just knocking things off the lists sometimes is just so much easier. But I know that is not correct to do.

With Elizabeth’s disorder of global dyspraxia and sensory processing disorder (SPD), she has had to work so hard for all her gains in life that helping her make those gains I think it is easy to lose sight of what should gradually become HERS to decide/be part of.

So, I skidded to a stop outside her door and when I went in, I brought up the subject of the “COVID shot” and what I was planning on doing for me and why I was thinking of doing this. I then asked her what she thought and was happily surprised to hear the litany of words that followed:

She hated when I had COVID last year. I couldn’t breath and talk. My voice was weird and I was so tired. She continued with I don’t want to get it again.

So even thought I kind of made the appointment before we talked, she said she wanted to go and even put it on her schedule for the week.

I always say there is a gift in everything and the gift here is that this realization that our young adults SHOULD have a say in their medical care/decisions even if it is harder and one more step for me. I think I already knew this as I have read articles on self advocacy but to really put it into place in our world was something I only dabbled in.

I want to change that! I want to remember this and work on it. It is quite important!

She is now 25 years old and takes a prescription medication. Following my better thinking, shouldn’t she be made aware of the fact that the medication needs filled? That she should be part of the process to not only learn how it is done but to make the goal to have her advocate for herself to make sure she always has enough? Or when does SHE want her eyes checked? When does SHE want to go get her prescription. I see all the opportunities for this new line of better thinking.

Sometimes, her SPD driven anxiety made these things hard to do as she was anxious by simple life occurrences, let alone the ones that require higher level thinking and processing.

Maybe this little story will help someone as they navigate this time of life and maybe this will help someone see that laying the groundwork for advocacy early helps with it when they get older and things get more complicated.

After all, I am learning as we go as well!

I wish everyone a peaceful week,

Michele Gianetti author of Elizabeth Believes in Herself

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