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Holidays and Special Needs: How to Navigate

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THE HOLIDAYS!

“yes….yes indeed…Santa Claus is coming to town”  and soon.

I offer this blog post out early in December 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 get together or if we had it then, zoom video calls.  We had to think of the sights, sounds and smells that would assault Elizabeth’s system.

Having now successfully navigated near to 23 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, are allowed 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 video call and your family and child has fun, then consider that a success.  No one said all things need to be done to make a Merry Christmas…Be true to yourself and your wishes …no matter what and especially this year.

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 something deemed important, can be a present better than anyone that could fit under a tree. 2020 has taught us nothing if not to treasure time and those you love!  The gift of happiness and good memories, for me, beats any gift.

TAKE A MOMENT TO EXPLAIN WHY YOU CANNOT DO SOMETHING: Talking about you child, their needs to others 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 at a time that works best for your child 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 you a peaceful week and please wear a mask! We need to do this together!

Dear Santa,

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Dear Santa, Again I have to say it is hard to believe it has been a whole year since I last wrote to you. I hope you are doing well and you are healthy. Our year has been one that has taken us to really happy places and through some very hard moments but you already know that, after all you are Santa.

I know you have read my letters the past two years and of course many many more when I was younger. Sometimes, I wish I were able to simply put down my list of toys like I used to, when I was little. But the things I am asking for are things you really cannot put in a box. I believe that Christmas is a magical time, with thoughts of magic in mind, I hope the things I am asking for could be possible.

When I think about what I want for this year, I think my heart wants peace. The kind of peace that comes from within and helps with handling all the things that come my way. Parents of special needs children can never really control what we will be facing each day, so this kind of peace is priceless. We have all faced days when we feel anything but peace. Please leave that for us Santa, I know you understand.

Something els that comes to mind, Santa, is how much I wish I could be in many places at the same time. I wish I knew how to always successfully be there for my special needs child, for all the members of my family, at the school and with Elizabeth at therapies at the same time. I want everyone to know how I wish I could be with them but I am just unable at the moment. I am not sure how you can handle this one, Santa, but it one wish that lays on my heart most days. I know that asking that is too much, but maybe you could help to remember to be present in the moment I am in, to focus on the now and leave thoughts of those other places for another time. Parents of special needs children can find themselves thinking and juggling so many schedules and thougths that being in one place both mentally and physically is a gift. I know you will know just what I mean, Santa.

When I think of this year, I can see the milestones that Elizabeth has achieved, the successes we have played a part in. I ask Santa, for all of us that we have a strong memory for these good things. That somehow we will all remember these good, happy moments. How quickly, we can find ourselves focusing on what went wrong or what we need to do, instead of calling up a good thought or success. I ask for all of us who have those special children, the memory of the good to shine just a bit brighter and stronger than the negatives. I know I asked this last year but I think this will always be on my list, if I am being truthful.

I ask for all of us parents to have the gift of words to speak for our child, when they cannot. To use these words to help others understand them. To use these words to teach others about them. This is hard for us, sometimes, Santa. I kmow this gift would be so helpful to us all.

I know there are two other things that most parents would put on their list and I am no different but they are patience and perspective. How many times am I in a stressful situation with Elizabeth in each day? In one with my two typical children? In one in “just life” How I ask for patience, Santa, patience to see it is just a moment in time. A fleeting situation. To But I ask Santa, for all of us parents of special children to have the clarity of thought to “live in the moment” to hug, love, cherish and be thankful for those we love so much, while they are hear with us to love, to hug or to look into their faces. So much of life is busy and sometimes that busyness obscures our view of just what is important right now.

I hope you like the cookies we left for you, Elizabeth helped to make them, She is continually learning and growing. We have all grown with her on this journey. We have all learned alot and I know that because of Elizabeth, her siblings have two of the most understanding and loving hearts. I ask Santa, that those working with our children in the schools be given the gift of empathy, and belief in our children. We know they can learn and succeed and we know how they learn. I ask that those working with our children have this presents…each and everyday…our children need them to!

I know I have asked for so much Santa.

Thank you Santa, for reading my letter, I know you will do your best.