Archives for the month of: May, 2021

Last week our local morning show was doing a segment about the long awaited re-opening of our local kid’s science museum. It is one of those museums that is 100% hands on, full of water tables, craft areas and plenty of other areas that require close contact and shared items. So it was and is no surprise it has taken them this long to finalize their re-opening.

So the segments continued through the morning, but it was the final segment that got me thinking. The reporter was talking to the museum representative who said “You can now relax, let the kids play, walk around and enjoy the museum.”

I thought about that last statement and in my mind, I went back in time to when Elizabeth was young and how challenging it was to go anywhere with her. The grocery store was work for her let alone a hands on museum. We would not have been “enjoying the museum”

For those who don’t know, Elizabeth is my middle child who has special needs. She has global dyspraxia and sensory processing disorder (SPD). Her disorders made life very hard for her. It appeared she enjoyed very little in life because she cried daily and almost all day daily for the first 2 years of her life. Her SPD made everything feel wrong or offensive. She had anxiety about any sensation.

And as a result, WE had anxiety as we took her places.

Would she be ok?

Will she cry right away?

Can we help her hold it together long enough for her sister, Emily to get to go to the library?

Look she is doing fine!…BUT FOR HOW LONG?

As Elizabeth went through her therapies and her system got into a place of calm. It still required such planning to go to a party, new place, or trip as these made her SPD anxiety begin again. And it made ours fresh as well.

Do we have everything we need to calm her?

Do we have a plan B?

Did we explain what/where we are going well enough for her to lower her anxiety?

Did we talk to Emily and explain that we may not get to stay long?

Did we plan the best time to go? Is she napped? Will the place be kind of empty?

And on and on.

Our sweet Elizabeth was worked her whole life to keep SPD anxiety low and to talk to us when it is getting high.

And she has done amazing in her life.

But her SPD still shows itself.

Like the time near Christmas 2019 ( yep, JUST before COVID hit) we went to a crowded holiday event…..it was dark….she was NOT OK…..She simply could not do it………And she loudly made it clear to us.

The thing is that it is so easy to see just how early on in our journey with her that We learned to do things HER way. It wasn’t something we set out to do but we did. It just happened… we learned to monitor Elizabeth and her emotions , Emily and her needs, and more. that having us enjoy the event became something low on the list.

We learned to assess things, ask questions, plan, talk, explain, pray, talk, explain, hope, and then when the time comes, sort of hold our breath as we go through the event or place.

Hoping she gets to enjoy it like others are doing!

Hoping her SPD anxiety will stay away!

Hoping to see her smile and get the traditional “Elizabeth High-Five” at the end of something she knows was challenging for her but something she did! Which we celebrate to this day!

So back to the morning show…I would most likely not be the parent, “just enjoying the museum” rather we would have worked hard to be there.

I just wanted to share this for others who feel they are alone because hard work they do to get their child to an event or party or even simply the grocery store. For the parent who just survived virtual learning with their special needs child. For the parent doing everything they had to do for their special needs child since COVID 19 hit.

Life with special needs children is a journey and is hard work.

But watching their successes and their steps forward make the work so very worth it. Not less hard, just worth it.

But know you are not alone!

I wish everyone a peaceful week.

Michele Gianetti author or Elizabeth Believes in Herself

The title says it all…we are the very product of the lives we have lived and are living with our special needs children….for example

While other families attended football games or birthday parties, we would dissect into the smallest bits, just exactly how that game or party could play out, so we could decide if our special needs child could handle it.

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