Archives for the month of: January, 2022

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.

As I write this I am sitting in the kitchen on Monday night.

The first night back into the old routine. Michael had school and Elizabeth went “back to my life” after being on vacation for a week for the holidays. As in, we were home but everyone who is in her life in some regard were all off for the week. So hence, SHE was off for the week.

I know that so many moms out there know that any break from school and the normal routines of life can simultaneously be wonderful and also crazy and also fun and also exhausting.

I swear I cooked more food these past 2 weeks than I did when we were in quarantine the only difference was that there was Christmas music playing in the store and there were bell ringers outside.

I KNOW I did so much more laundry as I, again, swear my son likes to challenge himself to see if he can get a new personal best each week in terms of the amount of laundry he can create in a few short days.

I know I cleaned a lot more.

But it was all worth it. We made memories and got the chance to spend precious time together.

Until this past few days, when Elizabeth, my daughter with special needs, was quite “DONE” with being off. She had her little vacay routine going here but she really does love the busy of her life. So while being off for us, think movies and coffee runs, seems great. To Elizabeth it is fun for a bit but then…….

So, she and I made a bit more of an effort to put some more things in her day. We did her nails a couple of times as they chipped. She and I did a new workout or two together. We taught her to play darts (let me say ahead of time, we know this game requires good safety measures)

You can see that the efforts were there to guide Elizabeth through this last part of her vacation. As well as be there for the other members of my family.

Then we started “real life” today. And as much as “normal” is a good thing, it brings its own work. We worked on her planner for the week, we talked about what was going on each day. She set her timers for the day to help with transitions. And and and……

The work is there. Isn’t it.

Our thoughts are taken by the work it takes to plan for our children, our families…pretty much life No matter if it is time off or time on. And more so when your children have special needs.

Our work just change shape from related to what is going on with their schedules.

If you imagine your time and energy being like a pie. It is like 2-3 pieces of it are automatically on any given day, gone right away to these jobs I just talked about. For me, it is like those pieces go to my care of and life with Elizabeth. So life can change with the seasons and holidays but the pie will always have those pieces gone. I then use pieces for my husband, son and daughter, Emily.

So what do I do with the remaining”pieces” I think I have learned the importance of not simply giving them away without thinking.

Maybe conserving them is a more accurate of a way to put it.

And to help do this I have been training myself to think about a lot of things related to this:

I thought about how much relaxing and devoting time to self care requires conscious and serious thought.

I also thought about how important it is to do these things because we need to be there for our special needs children and can’t be fully there if we don’t take some time for ourselves.

I thought about how these self care times don’t have to take long but they need to be done regularly. But should just be something that you like to do. Sometimes for me, just getting a cup of good coffee can be a boost to my reserve.

So maybe as we start this new year, it is a nice time to put some thought to the importance of keeping your reserves up and for making time for self care.

We as parents and caregivers of these beautiful special needs children, won’t really ever have a whole pie to pick and chose where the pieces go, so it is so important to learn how to conserve the remaining pieces. No matter what.

My day today took the same type of shape it did prior to Christmas break and I am grateful for the day. But I know that the work of the day will be there tomorrow and I also know that tomorrow I will make time to catch up with a dear friend. That will build my reserve,

What will you be able to do for you?

I wish everyone a peaceful week. Please stay safe, wear a mask and get vaccinated.

Michele Gianetti: author of I Believe In You

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