I can remember the day when I learned it…..I can remember that it was NOT an easy thing to accept….and I can remember the feeling of understanding once I did.  and it is that this path we are on….this journey…our road…is a marathon, not a sprint.  That, for us, SPD and its dyspraxic component are part of your Elizabeth forever.  

That there will not be a day that it is simply gone.  

We need to know this to realize all we do for our children will make a huge wonderful difference in their lives, but that through their lives, their disorders or diagnosis will play a role.

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As I write this, I just walked by Elizabeth’s vision therapy notebook. The one that has in all her exercises and items for us to use for them.

We just did the exercises yesterday and we are to do them each day. But we had run into a number of things that threw a curve ball into our therapy schedule and pretty much the rest of her schedule lately.

Such as COVID, yeppers, Elizabeth got COVID from one of her jobs and she was kind enough to give it to me as we spend so much time together. So we got to experience round 2 of COVID together. (Our first was in March of 2020) This took us out of the running for over 10 days

Or the happy fact that her sister, Emily came home as a surprise one weekend.

Or the fact that we had a lot obligations with a sick family member.(extended)

In other words…life happened.

And sometimes life allows your plans to take place and other times, it is what makes you change your whole itinerary on the flip of a dime.

So, the best laid plans have to be adjusted. And this is something that teaches us about flexibility.

Flexibility is not something we are all good at and especially our children with special needs, who sometimes need things to go just a certain way. The way they planned for.

I know for us on our journey with Elizabeth and her disorders, we found that a schedule was important for her not so much so she could have things go a certain way but to help her plan for what was coming next. Her SPD (Sensory Processing Disorder) and dyspraxia make it hard for her to motor plan for transitions. So the schedule helped her in that way. But the thing we always helped her understand is that although the schedule might say that this or that is coming next, it may not be at a certain time and that it is a loose schedule. More to guide her than to be held to.

The concept was hard for her at first, many years ago. But we would help her by telling her that life has changes, not everything will always go the way it says and that that is okay. We talked a lot about it to her even if she couldn’t talk back, yet.

We planted that seed early in her life to help her as she saw life didn’t always go the way we want it to and that was okay.

On Sundays, we usually fill out her schedule for the week for her. We put down what she is doing, when it is happening and when she is hanging out with friends and when she is working. She refers to the calendar each day to help her (STILL) plan for the day and its events.

But what an exercise in learning more about Flexibility as she watched her schedule slowly being erased by all the reasons I shared above.

We talked it all through, but she would say things like “I can’t wait to get my life back” or ” I want to go back to my work and friends” This was said with a hugely stuffy nose when she had COVID but she knows what she wants to do but knows the whys of why things change or can’t happen.

This is the continued learning about how to be flexible in life.

We all know our children the best so we all know we want them to be able to handle and navigate life the best they can and part of that is being able to be okay when something doesn’t go just as planned. Is it hard work to teach this concept? I feel that it is.

But is it hard work to help them through each time that plans have to change or be adjusted? I feel it is!

Everyone has their own journey with their special needs children I just shared what work we have done on this area. Maybe it will help someone who might need to hear it this week.

I wish everyone a peaceful week,

Michele Gianetti author of I Believe In You

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