Archives for the month of: January, 2022

Ok, Where to start?

Suffice it to say that sometimes this step backwards comes at you but you can see it on the horizon. So you get ready.

You see a change in mood, or activity or a bit more or less of behaviors in your child that you don’t typically see.

It is like when there is a hurricane warning for those in the South, you get ready with sandbags or shutter your windows because you know it is coming.

That is when you have warning.

Then there are other times, when you don’t get to look to the horizon to see the stirrings of a problem. Kind of like in prairie times when there was a blizzard that just HIT! WHAM, wind, snow and cold.

These are the ways, in my opinion, that these steps backwards arrive.

With that being said and well explained (insert smile face here!) Here is our story:

Our most recent “Two steps back” came like the blizzard example.

One night, our beautiful Elizabeth went to bed. Content and happy…..

However, the Elizabeth that emerged in the morning, while looking just like the Elizabeth who went to bed, in no other way resembled her.

She was irritated and short fused. Challenged by the simplest of commands. For example, in no way should ” How about you throw your laundry in this morning?” illicit the irritated, icy response we got.

Now I fully get that this does not seem like the two steps back has even occured right? But see, this is where it all ties in. Due to the way Elizabeth is wired neurologically, with her Dyspraxia and SPD (Sensory Processing Disorder) sometimes it is OUR reaction to the above mood that can start her system to react more.

It reacts by becoming disorganized due to stress ( some from her, some from us)

Then she doesn’t initiate tasks well -which makes us ask her, which makes her anxious

Then when she does try to do somethings, she cannot complete them well

Then she doesn’t really want to try as she isn’t feeling successful.

So we do some things for her that we know she can do and she happily lets us

And we repeat.

And repeat.

There is the “2 steps backwards.”

Now here is the kick. When she is feeling this irritation, she really doesn’t want to talk at least not at first. So we can only sooth her, not really help her work through the emotions that originally led to the irritation.

Trust me, with COVID and the stressors of life, we probably all want to unleash some raw emotions but we probably find more appropriate outlets. Such as talking, exercising, prayers etc.

Which are all things Elizabeth has in her tool box. But she didn’t go into her tool box this weekend.

So now it is Wednesday at night

4 days from Sunday when the metamorphosis happened and she is visually getting more organized. She talked to me several times yesterday and today.

So we can see this swirl of emotions is abating and like all things in life, there is a gift to this. Sometimes you have to look really, really hard for it. But it is there.

For me, the gift is learning that natural consequences have to be allowed to happen more, when these 2 steps backwards occur. Not huge ones, just ones that allow her to see the importance of her maintaining a certain level of tasks. Such as if you ignore your alarm in the morning, perhaps you will not have time for any breakfast other than a quick protein bar going out the door. Instead of me, waking her 2 times and hearing that she “just didn’t feel like listening to her alarm”

In any event, this all happened this week and I share this because I know I am not alone. And yet, for those who wonder if this happens later in the years with your child, take comfort it does. But as always, we are still learning and growing with Elizabeth.

All the work is worth it but it has been a week for sure.

I wish everyone a peaceful week ( I am directing that to us as well!)

Michele Gianetti author of I Believe In You

I am not sure where I last read this but I was clicking around the internet to some groups in one of the social media outlets. It was for special needs parents and the one comment said how hard it is as a parent of a child with special needs when you see your child working so hard to do something that others can do quite well and fast. And how hard it is to come to grips with the fact that our special needs children will not be doing things at the times they should…like their neurotypical peers do.

This was on my mind because my daughter, Elizabeth is now 24+ years old and, for those who don’t know, has special needs. She has global dyspraxia and sensory processing disorder (SPD). These make her life some pretty hard work each day.

AND she is still accomplishing wonderful things.

Maybe they are things that others her age may have done earlier. Okay! not maybe but definitely.

But does that really diminish the fact that she is now doing it?

I think not.

In fact I think not so strongly that any success she does will still be something I can live off of for a long while.

And why is that you may ask?

Because SHE DID IT! She has these disorders that are ALWAYS there and ALWAYS affecting her days and actions and she fought through them AGAIN, worked hard and worked harder and DID IT.

So how wrong, in my opinion, would it be to minimize this success because it should have been done a few years ago. Who really cares?

It a child is neurotypical and is struggling with doing something we know many a pediatrician who would encourage parents that all children learn at a certain pace and some want to learn this one thing first and will focus on it fully and then they will move on to the next thing they want to really focus on.

So we just cheer on the successes and enjoy their pride in it.

Elizabeth and I just started her vision therapy exercises this week and as we were starting them, complete with a BIG binder of info, calendars and places to write what we did, how she did, remarks, and questions I might have, it all came flooding back to me.

The therapies of the past, similar binders, plans, outlines etc.

And it got me thinking (again) Wow, she has really worked hard in her life and (also, wow we have been at this a LONG time)

But will we still celebrate the successes we hope to see from this therapy.

YES! Because she worked for it.

It will be a success for her.

Could/should it have been done earlier? Maybe,

But a success is a success.

The time it is done in is not right or wrong.

It is their time. This is how we see it.

So maybe to those who think about this often, maybe some words from this person right here, some 24+ years into this journey can be ones that will help just a bit.

Enjoy the successes as they arrive WHENEVER they do.

I wish everyone a peaceful week.

Michele Gianetti author of Elizabeth Believes In Herself.

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