Archives for the month of: November, 2021

The minute our Halloween candy is passed out, it seems like the holidays come full force!

And with it comes all the adjustments, changes and resulting anxiety for our special needs children.

I offer this blog post out early in the season as a way to share how we prepare our mindset for the upcoming holiday time.

As a child the holidays were filled with just wonderful, busy but not too busy.  When I think of them, I can almost hear the laughter of my family and feel the cozy warmth of love.  Yes, the holidays were that and more.  Maybe it felt calm as I was in the role of a child or maybe that is how they felt “back then” In any case, the holidays of before are quite different than the holidays of today for us.

Early in our marriage, think before children, we planned whatever we wanted to do for those fun weeks before Christmas and for the actual day itself.  When we had our first child, Emily,  we had to plan our schedule around naptimes and bedtimes, always being sure to pack the right snacks and entertainment to make sure Emily enjoyed her day.  What then seemed busier with a child was really quite doable and fun.   The holidays continued in this manner for a couple years until Elizabeth was born….it was then we learned that our holidays,our ways that had worked for us for so long  was in no way going to be what worked for our second child.

I can remember our first Christmas with Elizabeth.  She was almost six months old.  So for those who have read my book know that at this time we really had no idea of what she had but we knew something was wrong.  The crying and clinging were a constant in our days but both seemed to increase during the holidays.  Most times babies and young children can get quite a kick out of seeing family members, having them over to play and visit.  Emily did that is for sure, but Elizabeth did not, she couldn’t, her system just couldn’t.  So it was at this first Christmas, that we began to get schooled in how we were going to have to  manipulate the holidays to fit Elizabeth’s needs.  We had to learn to do this while still giving Emily all the fun she wanted, while smiling on the outside and having our hearts crushing on the inside.

Once Elizabeth was diagnosed with Sensory Processing Disorder or SPD, we quickly learned how our thinking needed to change.  We learned early on that what we WANTED to do each holiday and what COULD do were two different things.  No longer could we simply say “yes” to an event, or a party.  We had to think of the sights, sounds and smells that would assault Elizabeth’s system.

Having now successfully navigated near to 24 Christmas seasons, I wanted to take a moment to offer out some of the things we think about as we enter this season:

JUST BECAUSE “THEY” SAY YOU NEED TO DO IT, DOES NOT MEAN YOU HAVE TO: I wanted to start here because for some reason, someone or a group of someone has become the “they” that we all reference when speaking of the holiday. “They are doing this” or “They say this year everyone is….”  It is this group of “they” who deem the holidays be filled with parties, shopping and BUSY!  But truthfully, it does not have to be this way…Pick what YOU want to do and what YOU hope to accomplish for your family and allow yourself to be okay with it.   If you make it to one party and your family and child has fun, then consider that a success.  No one said 15 parties and a sleepover makes a Merry Christmas…Be true to yourself and your wishes …no matter what.

SOME OF THE BEST PRESENTS ARE THE ONES YOU CANNOT WRAP:   I watch so many commercials that say “Get this as the perfect gift”  “Make you children happy with this toy” or “Don’t forget to give that special person …” and trust me I have done my fair share of finding the PERFECT presents over the years.  But having a child like Elizabeth, with such definite special needs, one learns that the gift of her smile, a happy day together with family, a special memory made with her siblings or even a new achievement done that day, like handling the noise and intensity of a party can be a present better than anyone that could fit under a tree.  I remember six years ago when a faulty washing machine hose led to a flood in our kitchen on Christmas day…we were visiting relatives at the time and returned home to a horrific mess.  As I was mopping water in our kitchen I was still thinking and rejoicing at  how great Elizabeth had done and how happy she was at my mom and dad’s the night before and for our Christmas morning at home.  I was seriously handling this HUGE crisis with a happy heart because years before Christmas was simply too much for her. that day was a gift for us all.  (for the record, I totally lost it about four days later when we were told just how bad the damage was..think replacing the sub-flooring!) But the gift of happiness and good memories, for me, beats any gift.

TAKE A MOMENT TO EXPLAIN WHY YOU CANNOT ATTEND:                                            I have spoken of this before and I always want to touch on it again, but tell those close to you the truth.  Don’t try to go it alone, or try to make the day work.  The sensory processing disorder or SPD that affects Elizabeth would simply overrule any efforts made by others to help or make the day work.  Being honest and being true to the needs of your child and your family will bring you peace.  I say this as my opinion, but having hid our needs for so long before and having tried to make it all work.  I find it so freeing to simply say ” We can’t thank you so much and here is why”   Perhaps attending in a limited capacity or for a bit might work but without being honest you will never know if it is an option.

CHRISTMAS IS A DAY…TRULY …JUST A 24 HOUR PERIOD:                                              I offer this out for you as well as for me, to help keep things in perspective.  It is a day…ONE SINGLE DAY… a day made bigger by the media and merchants but in truth simply a day.   For me a day to rejoice in the true meaning of Christmas…the infant in the manger…star…the promise…. I am not waxing religious here just saying that to celebrate the day your way, to be okay with what you CAN do…to make the memories your way….well perhaps like Linus says “That Charlie Brown is the true meaning of Christmas”

I wish everyone a peaceful start to the holiday season and please wear a mask, if you haven’t, get vaccinated

Michele Gianetti author of Elizabeth Believes in Herself

My husband was rooting around in the silverware drawer as he was searching for a fork.

The reason he was rooting around is that the forks were not in their typical spot in the silverware holder. Meaning the small forks were mixed in with the big ones and so, hence the rooting.

John: Why are all the forks mixed up?

Me: Elizabeth emptied the silverware from the dishwasher today.

John: Smiling…so how are we expected to live like this?!

We both laughed a bit.

We all know that due to her Global Dyspraxia she has to learn every new skill and process them correctly. And that many things can affect her ability to perform a task, even if it is one she already knows, such as anxiety about something else in her life or being too tired or even being upset she is asked to do this job in the first place.

So we get the why of it all.

And after all, most of the time she puts things away, they are in their correct place. Maybe not placed correctly in their right place but they are in their right place none the less.

Example: The clean towels are on the shelf in the bathroom.

Are they folded in any recognizable form sometimes? NO! but they ARE in their right place.

We see other little things that tell us Elizabeth was there.

Such as when the toothpaste tube is completely obliterated in the middle but there is plenty of toothpaste left in the tube below the squeezed middle. Think of a toothpaste tube made to look like the number 8.

Or when the dishes are left out on the counter because she couldn’t fit them into their spots on the shelves…

Or when the remote controls to the television are meticulously placed in the exact same spot by the television, which would seem like a good thing except we are sometimes still wanting to use them and sometimes think we misplaced them only to find them in their original spots.

I think sometimes I use these moments to teach or talk about them with her. Such as how it is important to take your time when you do a job and put things away well.

Or how it is important to ask if we are done with the remotes BEFORE you put them by the television.

We also work on her folding the towels the correct way, which she knows how to do but like all of us, she cuts corners.

With her disorders, it is important to make sure that the information on how to do a skill or task gets inputted ( is that a word?) or processed the correct way the FIRST time. Habits are formed quickly and are so hard to break.

Some of the things she does makes us smile and others makes us root around for the correct fork.

But since we understand the why of it we are able to help and guide her. I think so many many times in these blogs I stress the importance of knowing WHO your child is and HOW they work.

Because knowing this and starting there allows for you, me…US to help our children succeed and help us teach others how they work.

Dyspraxia will not quit so for us, we can’t either. We will teach and support, smile and laugh but be there for her as best we can always.

I wish everyone a peaceful week. Please wear a mask and get a vaccine!

Michele Gianetti author of Elizabeth Believes In Herself.

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