As I was waiting for Michael to come home from an outing with his friends, I was looking out the front window and watching the snow fall. It was after 11:30 at night, so it was dark out and the street lights made a nice glow in addition to our Christmas lights.

It really was quite pretty.

And as I had my face close to the window, I started thinking about the little bit of glass that separates me from the cold, but pretty, cold night and that even if the glass itself is thin and could be considered a tiny barrier, it did a good job of defining the two spaces. Outside from inside.

This little bit of separation made me think about Elizabeth and her life. And well, the lives of all our children who have special needs.

No matter how close we get to their world, no matter how close we get to THEM, we can really never be fully be in the world they survive, thrive and work in. I can THINK I understand Elizabeth. I can THINK I get how hard it must be to function with her global dyspraxia but in truth, I can but NOT completely.

I can get close. I can see the struggles and celebrate the successes but I CANNOT get into her world because there is a barrier thin as air but there.

I know this can really be said for anyone. Perhaps a friend who is going through a tough situation or a relative who is ill. You can BE there, but cannot bridge that distance to truly be IN their world. What we can and do do offer support and love.

I know that so many of us have worked quite hard for our special needs children/ young adults and have used the same words I have. Words like: I understand what my child has and how to help them. And for the most part that is true but only to a certain point and the rest is that our beautiful children are truly the only ones who know what it is like to wake up, put their feet on the floor, start a day and begin the work of the day with whatever challenge, disorder or diagnosis they have.

And they get up and do this everyday

And they work hard for things that others simply do not have to.

I watched Elizabeth work so hard at trying to count money this morning. Now we have, of course, worked on this prior but the skill has gotten rusty and we needed to review it. So I thought a quick review would be a nice fun thing. Flash to an hour plus later when we had downloaded 3 apps on the Kindle, struggled to make our way through the first stages of money counting and I watched her frustration grow.

I was sitting RIGHT next to her, peering over at the Kindle screen and I could feel her anxiety and encouraged her but I CANNOT, simple CANNOT be in her world as she is trying so hard.

I think there are times when I look at the world we live in, all that is swirling around us, all the crazy we live in and then I look at my Elizabeth….the same way I am sure you look at your child with special needs, and think through all the crazy, the continue to work so hard to do their days.

I am really in awe of them and just wanted to share some thoughts that washed over me this week.

It has been an emotional week for me for many reasons and this is one made me want to share this blog.

I know we tell Elizabeth that we are proud of her many times a day and that she is loved so so much but this week, I think I told her extra times because the work she does each day to simply succeed in the day, as do all the others with special needs, needs to noticed.

I wish everyone a peaceful week and as always..please wear a mask and get vaccinated!

Michele Gianetti author of I Believe In You

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