For those who have been following my recent blogs, I know I spoke about how nice it was to have Elizabeth enjoying her own schedule again. This was after a summer and early fall of pretty much nothing but adjusted schedules, changes and time off.

In the words of Elizabeth…”I have my life back”

And it has been nice….really nice.

When we do her schedule together each week, she can put down all the information easily as it is now a nice routine.

Woohoo!

Then I just had this thought and it was… the Holidays are coming.

Which on one hand is great. I mean who doesn’t love the feel of the holidays, traditions, family and the like? But on the other hand, is the truth of the holidays for those who have a child with special needs in their world and that is…

The holidays mean change. For us, I want to add…AGAIN

This means the days we are enjoying in a nice rhythm will not be in that same way soon.

This means that the days will take on a new shape with different obligations, things to experience and do. And while this may be a good thing, it doesn’t mean it isn’t an adjustment that can be really hard for our children.

So, when I think holidays, I think good stuff and then IMMEDIATELY think about the tough stuff.

I wish I didn’t do this but life with our beautiful Elizabeth has taught me otherwise. So being prepared early and ready for the changes is actually the best way to go about this fun season.

At least in my opinion.

So back to Elizabeth’s nice schedule. Something I learned on the tough summer we had was that even though she is 25 years old, her disorder of global dyspraxia makes organizing and planning her thoughts and actions hard. So when she is faced with open ended time, she is really not the best at figuring out how to fill it effectively and needs help with this.

So this summer all the open ended time actually created anxiety and this is something I learned we can offset with some planning. More detailed planning than just a daily schedule. Planning that is reflective of her current interests and activities. Meaning, that since she likes to work, when her work with the schools is not available because it is the holidays and they are off, we need to find volunteer options or maybe work another day or so at her other job.

She loves to sing and do her workouts with her trainer, but when those are not available, again, due to the holiday break, we need to find something to fill these spots that challenges her. Maybe a new workout on the computer or another session with her reading tutor.

I guess the point is that for Elizabeth, see the future changes coming, and taking the right actions can help her feel less adrift and more anchored with an adjusted schedule. Maybe not the one she loves so much, but a good one nonetheless.

I don’t want anyone to see the holidays and want to run for the hills. But maybe see the holidays coming and take a moment to really think what you liked and didn’t like about last years and what you did or wished you did last year or even what you wished you had not done. And then think about how or what you want for this year.

The gift of those darn red and green decorations going up so soon is that it is like a warning flag of what is coming. And the other gift is that we can use that warning to plan as best as we can for our children who need that extra help to adjust and have happy times.

The other thing is that with nice, advanced planning and hopefully the peace it brings to your child will then bring peace to the family because I speak from experience that when Elizabeth is anxious or unsettled it does affect the family and our home.

The calendar will flip to November soon, so now is a really good time to do some thinking and planning.

I wish everyone a peaceful week,

Michele Gianetti author of Elizabeth Believes in Herself.

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