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

A work in progress…

That is what I say and have said so many times usually when I am asked about goals and the like about Elizabeth.

I say this because it is the truth, in fact we all are a work in progress in many areas in our lives.

And

That with Elizabeth’s special needs, we are always trying to make gains and keep growing. Her disorders of global dyspraxia and sensory processing disorder (SPD) make learning new skills and even performing previously learned skills (at times) difficult.

So, as we keep working on goals. There is one goal that is important to Elizabeth and actually quite important to life and that is reading.

Elizabeth has asked specifically of her tutor to help her read better. So that became an official goal. Then when she would get upset reading or ask if she could be done reading or would try and become frustrated. So even if this was something she wanted to do well, her disorders got in the way.

We then added vision therapy to her life and as I have written before, she loves her vision therapy. We have been doing it for some time now and I have checked in with Elizabeth often as she is typing or texting to see how her eyes are feeling but there has only been one objective bit of information that tells me her eyes are benefitting from the vision therapy and that is that her prescription for her eyes actually got better! So with no other reason for it, I chalk it up to the therapy.

That was until this past week when her new reading tutor had her read out load from a book that was not on her age level but on her reading level….and the cadence of her reading was amazing! How long she read for without complaint was amazing! But there was one thing, one little but HUGE thing she did that stopped me in my tracks in the kitchen ( her tutor comes over to work with her)….she did not know a word and I

HEARD

HER

SOUND

IT

OUT

This skill is one typically missing from those with dyspraxia because they typically memorize their language and don’t sound out words, just memorize them.

I think this was huge and wonderful and made me chalk up something else to vision therapy.

We visit the vision therapist again at the end of the month, so I will be sharing the above with him for sure!

Exercise for our children and young adults with special needs can be a tough thing to put and keep in their lives. We have just discovered a wonderful new option for working out via Zoom. It is a way to make friends and stay fit. It is called Let’s Go Fitness. Take a peek to learn more for your child. I love that the classes are all online, that those classes encourage friendships, and that fitness is made fun!

Elizabeth had her 20-minute initial zoom call yesterday and I was so impressed with how this program is run.

As I said …take a look to see if it is a good fit for your child.

So, two new things in Elizabeth’s life…after all, we are a work in progress!

I wish everyone a peaceful week,

Michele Gianetti author of Elizabeth Believes In Herself