Spectrum Parenting: It’s the Most Wearying Time of the Year

The holidays are here. That time of year when parents of kids on the autism spectrum are smacked in the face with the reminder, “You’re not normal.” We spend the majority of the year running to and from therapies and doctor visits, cooking allergy-free foods, trying to keep our kids safe from self-harm, fighting to convince insurance companies that our child’s services are “medically necessary,” and trying to persuade the school district that our child needs other services they aren’t willing to provide because they are “medical” in nature and not “educationally relevant.” It’s a fairly high level of stress by anyone’s standards.

So along come the holidays, and whether you celebrate Christmas, Hanukkah, Kwanzaa, Festivus, or something else, the impact is the same—the kids get overwhelmed and the parents become disheartened. Here are a few things to keep in mind that I’ve learned from my experiences and from families I treat.

See It from Your Child’s Point of View

It’s a time of extrasensory experiences, lights, sounds, and unusual smells. Stuff is moved around more than usual, schedules are changed for parties and winter breaks, and things are just … different. For a person on the spectrum, that alone can be a nightmare. Even kids who appear to handle the transition well can have more meltdowns or increased anxiety and not know why.

In addition, the holidays seem to be the exception to every rule we teach our kids the rest of the year. We teach social appropriateness, then ask our children to sit on a stranger’s lap in the mall while we take pictures. We spend countless hours teaching them how to throw and catch a ball, and suddenly we’re asking them not to touch decorations adorning the Christmas tree, most of which are shaped like … you guessed it. They’re taught not to destroy property, yet we hand them a beautifully wrapped gift and encourage them to “have at it!”

And what about the fact there is a tree in the living room? One year, when my son was a toddler, he insisted that the tree needed to go outside and the decorations did NOT belong on it. We spent several mornings waking up to an undecorated tree being dragged across the house, left by the front door waiting to be put out. At the time, I saw this as my son being “difficult,” but now I realize he was only trying to make sense of the senseless.

My advice is twofold. First, gather your empathy and make your expectations realistic. If your child can usually handle social situations for two hours, require only one hour at a party or gathering with relatives. Or give him/her the choice of whether to attend and for how long. Second, adapt “traditional” activities or create new traditions that are more “your-kid-friendly.” If your child can’t stand the sound of paper tearing, use gift bags or don’t wrap the gifts at all. In other words, think outside the (gift) box.

Do (or Don’t Do) Holiday Cards Your Way

Need I say more? If you have a child on the spectrum, you know the pangs you feel when you open that card from the “ideal family,” dressed in color-coordinated outfits, donning giant smiles. It’s usually accompanied by a letter that describes in detail their son’s accomplishments in rocket science and their daughter’s induction into the National Honor Society (and she’s only 8 years old!).

Boom. You’ve been smacked in the face once again with the “we’re not normal” feeling. Most likely, you attempted to take a family picture and had every intention of creating a Martha Stewart masterpiece with a letter of your own. But your child won’t wear clothes most of the time, let alone a matching outfit, and the greatest accomplishment you have to report is that he made it through the first half of the school year without physically accosting the bus driver.

I usually remind myself that holiday cards are a luxury that we can’t afford and recall the moment, 10 years ago, when I gave myself permission not to send them. At that time, I informed my friends and family that we would no longer be sending cards but that we loved them and thought of them fondly at this time of year. Another family I know decided to use one of the more chaotic pictures of their children lying on the floor on top of one another and added the caption, “Merry Christmas from our REAL and perfectly imperfect family!”

Know It Will Get Better

This year will mark my son’s 16th Christmas. He’s gone from not wanting to unwrap gifts to being able to ask for what he wants for Christmas. Over the past few years, I’ve slowly brought out the glass ornaments, and now he knows not to throw them. The first year he helped decorate the tree, he arranged the ornaments by color: red balls in one section, green in another. Tonight, we will decorate our tree, and he is actually looking forward to it. And if, at the last minute, he decides he doesn’t want to, that’s OK too.

For our family, the holidays have become about celebrating who we are rather than who we think we’re supposed to be. Martha Stewart I am not. And that’s a good thing.

© Copyright 2013 GoodTherapy.org. All rights reserved. Permission to publish granted by Janeen Herskovitz, MA, LMHC, therapist in Ponte Vedra Beach, Florida

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