Navigating the holidays with special needs requires care and planning. It is also exhausting.
I am tired.
Not so much from a lack of sleep, although I am that kind of tired too.
No, I am more weary, soul tired. My limbs feel heavy as I move through my days, and find I need to tell myself to pay attention when someone is talking.
It’s December. I love Christmas. LOVE it. I don’t want to be this tired.
My favorite childhood memories are of Christmas time. Not the gifts, but the traditions, the “special-ness” of it all.
And the “special-ness” of it all is what is most difficult for my son.
Every year, from Thanksgiving until New Years, we deal with a heightened level of tension and stress – and not because we are crazy in our decorating or saying yes to every single Christmas party (no way – momma ain’t got time for that!).
The reality is simply this: the holiday season is not easy for my boy. It hasn’t been since he was a little baby. There are valid reason for this, but prior to his diagnosis, I didn’t get it.
I can’t tell you how many Christmas mornings I spent in tears, as my son melted down either during or immediately following opening his presents.
I can’t tell you how many Christmas dinners I spent holding my breath, hoping he would take a bite of something that was on his plate.
I can’t tell you how many Christmas evenings I spent dealing harshly with my son, as I believed his behavior demonstrated a lack of gratitude.
Merry Christmas, right?
Oh my goodness, I wish sometimes I could go back in time and just bop myself upside the head.
I am glad to say that our approach to the holidays has changed quite a bit.
As my son has matures, we have learned more and more about his needs and how to help him. We have learned to be planful and intentional as we navigate the holiday season. We have learned to take seriously how difficult this time of year can be for my son.
Navigating The Holidays With Special Needs
These are the areas of greatest concern for us during the holidays:
The routine is less and less the same, the closer and closer we get to Christmas. For the rest of us in my home, that’s the fun of it. The season is about Jesus, and celebrating together and doing things differently as we move through the month.
For my son, this is stressful at best. He likes sameness. He likes quiet. He likes order. One time, I wanted to switch around a piece of furniture to better fit the space in our living room. He could not handle it. He started to cry and panic. We had to have a whole conversation about me never, ever rearranging his room. So, imagine what adding a Christmas tree, and snow globes, and stockings, and nutcrackers, and advent calendars, and nativity scenes all over the house does for him.
As I have learned more and more about what my son needs, I have learned to pick my holiday battles. I try and keep the schedule exactly the same in morning and at night, no matter what day it is. If he can bookmark his day with familiarity, he is more likely to be comfortable with different and new things throughout the day.
As far as decorating goes, I only put out the things I really love. I talk to him about each of them, as a tradition and something “we do every single year as part of our family’s celebration”. Now that he is older, he remembers the nutcracker he picked out last year, and the advent calendar with the little baby Jesus that his brother likes to hide in various places for us to find. This sense of knowing what to expect helps. And, if I am honest, I kinda like the less cluttered, only decorate with things that I absolutely love approach.
So food is an issue all the time for us, but it intensifies around the holidays. Part of it is that we eat at other people’s houses as part of celebrating the holidays. Part of it is that he is already stressed out about the routine and so then his eating gets all out of whack (Which, by the way, feels like a never ending cycle because if he doesn’t eat, he feels worse, and doesn’t eat because he feels bad, which makes him feel worse…you get the point).
What I have learned is that the holidays are not the time to teach eating skills to my son. In this time frame, we relax our quest to help him tolerate more and more foods, and just let him eat what he thinks he can. If this means he wants eggs when the rest of us are eating spaghetti? Fine. There is plenty of time the other ten and a half months of the year to work towards him eating a varied and balanced diet.
Sleep was a big factor in the meltdowns of Christmas past. Christmas parties and church events, coupled with traveling to visit and celebrate with family (and therefore sleeping in an unfamiliar bed), meant less and less consistent bedtimes throughout the month, and more consistent stress, pressure and chaos for my son.
We do a lot less now. We will very rarely say yes to a party or event that conflicts with bedtime. It not only disrupts the routine (see above), but it cuts into time to sleep for a boy that desperately needs it function.
We do however, still travel. Quite a bit actually. The boys and I fly so they can see their dad around Thanksgiving, and again around Christmas every year. We also travel to see family and celebrate.
Routine, food, sleep? All messed up when we travel. But there is no way around it, so we do the best we can. Although the details of the travel are tough, my son LOVES seeing his family. He LOVES spending time with them. He LOVES being spoiled by them. And that, to me, makes it a good trade off. More than decorations, presents, trees, baking cookies, and advent calendars, he loves celebrating with his family. It’s a huge blessing, and so we figure out the travel.
5. Presents and Fixations
This is a new stressor that has just presented itself in the last couple of years. My son will fixate on his “Christmas List” for hours at a time. There is pressure and anxiety around this for him. He will often ask, “What should I ask for?” or say, “What if it’s not as good as I think it will be?”
We are trying to figure out how best to help him. What has lessened the anxiety lately is having me sit with him and read online reviews of what he is interested in. We discuss what people have written, and then he is usually a little less crazed over this part of our Christmas tradition.
This one makes me sad. As he gets older, this is causing him a ton of grief every year. It’s just another thing that is supposed to be fun, but just isn’t for him.
We try and reiterate that the presents are a bonus, but not the reason we celebrate Christmas anyway. We limit the number of presents per child to three. We do our best to help him.
So far, that’s all we’ve got on this one.
I read this list and I know why I am tired. I know why and I know it is temporary.
Because of Christmas, my son will not have to suffer from sensory issues and massive anxiety forever.
Because of Christmas, there is purpose and blessing in our lives, no matter how tired I may be.
Because of Christmas, there is hope and there is light.
Even with special needs. Even with meltdowns. Even with stress and anxiety and chaos.
Especially with special needs and meltdowns and stress and anxiety and chaos.
“The true light, which gives light to everyone, was coming into the world.” John 1:9
Wishing you light, hope and a little bit of rest this holiday season.
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