I realize I can’t speak for all kids/adults on the spectrum, but I’ve got a pretty good understanding of my own son, and hope to share with you some of the realities of surviving the holidays with a kid on the spectrum.
I’ve also been doing some reflecting, and feel like it’s always “autism sucks because…” and “we could have fun if it wasn’t for autism…”
I don’t want it to be this way. Pick your cliched analogy: Holland/Italy, Einstein’s tree-climbing fish, what have you –
if you don’t appreciate something for what it is, rather than resent it for what it isn’t, you’re going to be miserable.
That being said, I’m going to spend a little time discussing why big family holidays are so hard for kids with autism, and then I’d like to offer some suggestions for going beyond surviving, and into actual enjoyment of the holidays.
Kids like Jake need their routine to feel comfortable. Not just “like” routine, or “want” routine, but actually “need” routine. A big family holiday is anything but routine. It goes down one of two ways: the family packs up and heads to _______’s house, or the extended family descends on your place. If I had to pick one, I’d say invite the family over. At ______’s house, there’s no safe place to hide, a bunch of rules that aren’t clear to kids like Jake, and usually a laundry list of things you can’t touch or play with (which always seem to be the most interesting things).
At home there’s your room, your toys, your set of expectations and rules (which you should be familiar with).
Holidays usually involve visiting with people you don’t get to see very regularly during the year:
People who want to hug.
People who want you to look them in the eye.
People who pinch your cheeks and get in your face.
People who don’t know the rules.
People who don’t know any better.
Remember, holidays are a compromise.
These things aren’t usually likely to happen:
Big, staged group shots where everyone looks at the camera at the same time:
Formal dining room sets with lots of crystal stemware and exciting place settings:
“Gold” silverware. You know, the stuff you only pull out once every year:
We learned early on to dispel with our “Hallmark” holiday thinking.
One Christmas, we called my in-laws the minute Jake got up so they could be there when he discovered the goodies Santa Claus left and so that they could watch him open his gifts. Instead of a heartfelt family moment, we had a kid who looked like a celebrity ambushed by camera-wielding paparazzi. He cried, and hid behind an end table. Game over. Now we pace things a little bit.
For years, we tried to gather around at birthday parties and sing “Happy Birthday” in the customary fashion. This elicited more crying and eventually some stomping and yelling. Now, if we sing at all, we whisper when he’s out of the room.
When we go to Meme’s for Christmas dinner, it’s tradition for the family to gather around a handful of tables pushed together for communal family dining – it’s just too much for Jake. The last time we ate there, Jake and I ate from TV trays in the living room and watched Spongebob reruns.
These examples aren’t meant to make you feel bad. If you find yourself feeling bad, it’s because our holidays don’t match the “Hallmark” ones in your head. It’s OK. It’s not less, just different. Promise.
Recognizing that our reality wasn’t going to match our fantasy was an important step towards acceptance.
Here’s a list of things you can do to improve your chances of having a happy holiday season with your kid on the spectrum:
1. It bears repeating: align your expectations for what your child can handle, not necessarily what you want him/her to handle.
2. Realize that you may need to split up. Sometimes Dad and child eat in the quiet kitchen while the rest of the family is in the formal dining room. This is OK.
3. Take that one step further. Maybe Mom and child leave early, so Dad and other kids can enjoy the rest of the family.
4. Keep the home court advantage. Remember the “safe places” in a kid’s life, and keep them that way. Don’t let the older cousins have rule over your kid’s room.
5. Preparation is key. If you need to practice turn-taking with opening gifts, do so. If you need a social story, write one. If you need a picture schedule for Nana’s house on Thanksgiving, make one.
6. Kid-friendly menu. Not everybody likes Martha Stewart’s organic twig and berry, fru-fru turkey stuffing. A box of Mac&Cheese can take the edge off a fancy meal.
7. Pack a your-kid-friendly-bag full of their favorite video games, books, dinosaurs, Thomas the tank engine set, etc.
8. Prepare the other family members for how your child on the spectrum may act, and how to handle him/her when it happens.
9. Recognize the signs that your child is nearing a meltdown. Remove your kid from the situation BEFORE he explodes.
10. Be the disciplinarian. Nothing’s worse than having eleventeen different people shouting “no” at your child, who’s not sure why he’s being yelled at, and therefore has no way to fix it.
11. Keep as many of the other things in your child’s life normal during this ever-changing, chaotic season. Consistency and routine are very comforting.
12. Avoid the mall and Wal*Mart anytime after Halloween.
I hope this helps. If I’ve missed something obvious, please let me know, and I’ll make a new list.
Remember, all of us is smarter than one of us.
As an added bonus, here’s a link to a letter we printed and mailed out with our family Christmas card a looong time ago. It explains why the holidays are so hard for “our” kids, and it’s from the perspective of a child with ASD.