Archives for the month of: October, 2021

For me, having my daughter Elizabeth, has been a beautiful, winding, emotional, amazing journey.

For those who don’t know, she has special needs. She has global dyspraxia and sensory processing disorder (SPD). She is 24 years old now. She was once a young child who feared the world due to her SPD, was non verbal, due to her dyspraxia and struggled to learn any skill or task in her life, thank you to both of them combined.

She was anxious, afraid, and uncertain of life.

She walked at a 18 + months and when she did she kept those little hands in high guard. This position, I have come to learn is from being on guard, sort of in a place of just waiting for something to happen and to be ready when it does. It means her entire system was seeing the world and all is sensory things as almost threats and she was not going to let herself be taken by surprise from anything. High guard, for Elizabeth, looked like this. Arms up, with elbows bent and hands in gentle fists around shoulder height.

This is how she saw the world, as a threat.

Our goal was to help understand her and her disorders to then help her learn and grow and ultimately see the world as a place that isn’t a threat and one that she can live in well.

Back in 1997 when she was born, the internet was not what it is today as in it really was not a help in finding out path with Elizabeth.

We had a bit of help from a friend who was a therapist and knew something about SPD. Her words were the ones that we held onto and used as a basis for finding the first steps of help for Elizabeth. Her first therapist.

The thing I listened to as we started this journey was my heart.

If I felt something in my heart about a therapy, I trusted it

If I felt something in my heart to NOT do something for her, I trusted it and listened to my heart.

I am so sure there are so many others on their own journeys with their special needs children who just KNOW that something feels right or wrong. And they want to act on it.

But the thing is sometimes it is hard to act on it or translated….listen to your heart.

There are many noises out there than can get in the way. Such as others telling you their successes with this or that. Or others telling you absolutely do NOT do that therapy, it is a waste of time. Or Let me tell you, I will never do that again, but what you SHOULD do is…

So the thing I still think about, even this long into our journey with Elizabeth, is that the best guide for us for her, is to trust out heart.

So flash to the current Listen-to-my-heart-thing.

And its name is vision therapy.

Yes, this is something that we have heard about before, talked about before, and researched before. But not something we actually put on the schedule and planned to do before.

Until now…..and that is because something in my heart said it is time. I think it is because I have 2 friends who have their young adult children freshly into eye therapy and have told me just how much of a difference it has made for them.

So I wanted to offer out just how much important this guide, our heart, is for guiding our path.

For us?

Elizabeth is on the schedule for her eye therapy evaluation at the beginning of November.

I feel good about this because it is something I feel in my heart is a good step for Elizabeth.

Listen to your heart.

I wish everyone a peaceful week and please wear a mask. If you haven’t gotten one…get a vaccine!

Michele Gianetti author of I Believe In You

Besides Halloween there is something else that is on the calendar for the very near future and its name is..

Conference night!

At least in our school system, conference night is in October/early November. With COVID protocols in place in many school systems, conferences may be offered in person or virtual (such as Zoom) or over the phone.

I know that for our last ones for Michael, my neurotypical son in high school, I chose talking on the phone as an easy and effective way to communicate with Michael’s teachers. And it worked out well as I was able to concentrate as they talked, share the things I needed to share from the papers I had prepared prior and take some notes without having to be concerned with making “eye contact” on the screen or seeming distracted as I wrote some key words down.

Now, I have to say that I am not sure that I would have preferred that option if I had been talking about Elizabeth to her teachers if the same scene were set. Especially when she was young.

I think I would pick the option of a Zoom call, just to be able to see the expressions of the teachers as well as hear their voice. I think both help you understand the way they truly feel about how your child is doing.

I can remember early conference times where the look in the teacher’s eyes told me so much about their feelings and concerns for Elizabeth. Especially before we had really become solid advocates for her, so think 1st and 2nd grade.

For those who don’t know, my daughter Elizabeth has special needs. She has global dyspraxia, SPD(Sensory Processing Disorder) as well as an auditory processing disorder and due to her dyspraxia, she had a speech delay ( she did not talk until she was 5)

So as we presented this beautiful and complexly wired child to the school, it took work and good advocacy for them to fully understand her and as parents who were new to this IEP-advocacy-work with the school-and-follow up well-thing we only saw conference night as a chance to talk and go over how she was doing NOT see the teacher’s face look sad or the therapist who was there, seem sullen.

And that is why I would pick the Zoom option.

Words and expression together.

It helps to complete the picture for your child.

Something else, to think about is to make sure you are prepared because you are given a certain amount of time to talk and usually the teacher has something that they want to show every parent. Maybe it was a certain test or project they did. So there goes some of your time.

Being prepared with questions or concerns makes good use of your time. Bring a list and don’t be shy asking questions.

If your child has an IEP, read and reread it before the night. So you are familiar with the goals set and can discuss them readily instead of looking them up, reading them while they watch you read them and trying to process them all while the clock ticks

Sometimes, that allotted time just isn’t enough, please don’t hesitate to tell the teachers/therapists just that and ask if you can schedule another time to continue the conversation. And get it on the schedule that night. Then you don’t have to try to reach the teacher while they are in school or leave messages.

I know we left those early conferences with more questions than answers and more concerns than we went in with.

Experience is a great teacher. And we have had a lot of experiences ( insert smile face here) Hope the tips help someone who might need them.

I wish everyone a peaceful week,

Michele Gianetti author of I Believe In You

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