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

unhappy young boy at christmas
 

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 by Janeen Herskovitz, MA, LMHC, therapist in Ponte Vedra Beach, FL. All Rights Reserved.

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Comments
  • johnny December 26th, 2013 at 4:06 AM #1

    It is hard seeing that “ideal” and knowing that your family isn’t going to fit into that neat little box of ‘normalcy”.
    But you know what? I wouldn’t have it any other way. One thing that we can always say at our house is that life definitely isn’t boring. that’s for sure! And I would rather have that fun and spontaneity and our own special set of challenges any day over perfect on the outside but who knows what’s going on within.
    Our life is just fine.

  • Bill December 26th, 2013 at 9:39 AM #2

    I worry about these kids and how they do deal with these transitions. I know that for the most part children with these sorts of disorders tend to do so much better with little variation of their normal routines and the holidays are rife with change and spur of the moment plans. That’s not really something that these families can sacrifice because they have children who have a very strong need for things to be the same day in and day out, and to vary from that can cause huge upsets in their lives. If you have a friend or family member who has a child like this please be kind to them and try to accomodate their schedules and not make it so that they feel that they have to conform to yours. Most of us can change a whole lot more easily than those with an autistic child, and I know that the family will certainly appreciate that effort on your part.

  • lauren t December 27th, 2013 at 4:17 AM #3

    Your article shows many families that there is hope, that it is fine to be who you are and not who they think that you should be. I am sure that you like anyone else went through this struggle but you guys seem to have it figured out what works best for all of you, and that may not have one thing to do with what works best for me or for anyone else but that’s fine too. Thanks for sharing your story.

  • Janeen h December 28th, 2013 at 6:01 AM #4

    Lauren, Bill and Johnny, thanks so much for your comments. Here’s to imperfection, acceptance and never a dull moment! Happy new year.

  • Bryant December 28th, 2013 at 6:18 AM #5

    You just need to watch your child and know their cues. Look for when they are okay and when they are upset.

  • Erin December 30th, 2013 at 4:09 AM #6

    It’s not as if you want your child to miss out on all of the fun that the other kids are having but you and others do have to be sensitive to their needs and what could be a trigger for them.

    For example even some kids without developmental disabilities hate the concept of Santa Claus, so if yours does too, then why put him through that?

    There are all kinds of things that parents think have to be a part of the whole holiday experience but that really don’t. You have to discover the ways that keep it comfortable for your child and make it totally yours and unique.

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