Archives for the month of: July, 2021

As a mother of a child with special needs, I have spent so much of Elizabeth’s life thinking about places we are going and how to make them work for her. People we are going to meet and do they already know how to talk to her ( just like everyone else) or do they understand her trepidations. How will they handle it when she can’t handle things?

Her SPD has made her afraid of so many things so very early on in life,  I am sure so many people just thought she was a very unfriendly, cranky child.  They would try to talk to her or reach out to her to try something and then Elizabeth would respond in a way lead by her fear…she would pull away and cry. Therapy has helped her but to this day, when tired or stressed, she still has to work hard to be social.

Her dyspraxia would make doing something even if she wanted to too difficult, so the word “NO” would be heard or if not heard.  The head shaking back and forth and the pulling away generally got the point across.

And trust me, it is not like I could not understand how it would all seem/look to a person who would encounter Elizabeth for the first times.

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I’m not sure how it happened.

Maybe it was going away on our trip or maybe coming home and Elizabeth STILL wanting to be on vacation.

But whatever the reason, Elizabeth and I have lost the stride we had going on all of last year.

I know that it is okay to have a change in schedules with summer time. Trust me, I am all about summertime and having my kids home more. But for some reason, we are not doing so well with getting in the grove to keep up with her goals.

Meaning most of the things we were doing and that she had put down as goals are recently becoming things we

say” Why didn’t we do that?” about.

All of the things we do help Elizabeth with her goals of being independent, working within her budget and the like. So they are important things. Because as most of you know, Elizabeth has special needs. Specifically, SPD (Sensory Processing Disorder) and Global Dyspraxia. Both disorders make life hard work each day!

Now I will say, we have been cooking more together, working out and she is having fun hanging out with friends and working so those are great things for her and help make summer a nice fun time for her.

But I noticed that for Elizabeth, the less she does, the less she wants to do. So it seems unless we keep up, at least to a minimum of effort, on these other things that we haven’t been, Elizabeth looses the carry over effect of them.

For example:

Every Sunday we usually go over her budget to see what she has spent, talk it through, pay her credit card bill and see what amount she has left for the month. We do this on line but she writes the totals in the check book ledger book.

Now? We verbally go over what she has spent, go on line to pay the one bill and I have been writing it in the ledger.

So as a result, Elizabeth isn’t remembering to save receipts for her records or even wanting to talk about money as she prepares to spend it.

It is like it is an all or mostly none thing.

And it is happening with other areas as well.

Such as why is she watching Gilmore Girls all the time when before she varied the choices.

Again…all or mostly none.

So yesterday was the day it dawned on both of us because Elizabeth belongs to a Young Women’s Group which is a group of young women who have special needs as well as others who do not who get together online to talk about topics like healthy eating, emotions etc.

And at the end of the group, we get a email with a debriefing of the meeting as well as what the goals are for the month, what to work on, or do.

So as we were getting ready for the meeting and reviewing the goals we SHOULD have been working on and what we SHOULD have been journaling about and realized we DID NOT DO ONE THING!

How did this happen? Well, didn’t that just open our eyes?

So now we talked about it and agreed to get more focused again. Maybe not to the degree of the fall and winter, because after all, it is summer. But we agreed to do certain things each day, to keep focused on goals together.

So that about takes you to currency in our world and can serve as a gentle reminder to take stock of how your goals for summer are really coming along. Maybe time to adjust, regroup or redo them?

So today is day one of our new plan. I will let you know how our follow through goes.

I wish everyone a peaceful week.

Michele Gianetti author of Elizabeth Believes in Herself

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