Wednesday, December 8, 2010

Autism and Holidays: Success Through Meticulous Planning

Shannon Des Roches Rosa

As the 2008 holiday season sputtered out and the last relatives left our house, I exhaled, then smiled. I'd really enjoyed all the feasting and fun, from the morning moment the kids' cousins started frolicking underfoot, until the last precious late-night conversation wound down. But there is no way in hell we can manage another holiday season like that one, because floundering in all the happy happy joy joy was one miserable, disoriented, sleep-disturbed little boy with autism and his equally disoriented parents. Please, learn from our mistakes and successes so that your holiday season can be as enjoyable as ours was but suck less than ours did.

Your advocacy skills need to go into overdrive during the holidays. Of course you need to advocate for your child, to ensure they're accommodated -- but you also need to advocate for yourself. Your children are sensitive to your moods, so think about how you can minimize your own inevitable holiday stress and not amplify that of your child. Ask relatives to help out, and show them how to do it. Make your trip shorter, split up your family's travels, or just stay home. Get a hotel room and make it your child's safe space. Bring familiar toys, activities, and comfort items to occupy your child even for the briefest of moments, so you can take an occasional deep breath.

Here is what not to do: have a house full of guests stay with you for more than a week while your son is on a disturbed sleep jag and gets up every morning between 3 and 5 AM, and never ask any of your guests to spell you even though they have the option to take naps during the day and you and your spouse do not. I never asked anyone for help with Leo's early waking last year; he was in a particularly violent phase and I didn't want him to hurt anyone. This might have made sense for my 5' 2" mother, but not for my athletic 5' 11" brother. Instead of asking my amiable sibling to occasionally get up with Leo, I grumbled under my breath as that brother played Rock Band until 3 AM every night. Not asking was not very smart of me. Had I arranged for even a little bit of help, it might not have taken me two months to emerge from the post-traumatic holiday blues.

One thing we did right was give ourselves permission to make the holidays work for all three of our children. My husband's parents were not able to travel during one Thanksgiving yet really wanted to see their grandchildren, so my husband and I agreed that he would travel with the girls, while Leo and I stayed home and ate a sub-continental Indian Thanksgiving dinner with friends (Leo loves "naan bread"). We didn't think it was fair for the girls to miss seeing their grandparents because Leo wasn't able to travel, and it was absolutely not fair to subject Leo to the terrors of traveling for his sisters' sake.

Leo's in a better space now. He's less agitated, and his sleep cycle has normalized. Last year we had success staying with his grandparents for a short Christmas visit, after which Leo and I returned home, and his sisters dad stayed a bit longer. We're going to stretch the holidays even longer this winter with an Arizona road trip. But we remain aware that travel might make Leo implode, and are open to one of us taking our boy on the next plane straight back home, if that's what he needs.

The value of planning cannot be overestimated for kids with sensory sensitivities, who thrive on routine, or who are easily disoriented. Here's some holiday planning advice from experienced parents of kids with autism:

Laura Shumaker outlines eight tips to help you survive the holidays, specifically:
Take two cars to holiday parties when the whole family is invited. You get the picture.
Karen Plumley recommends talking to kids about their routine and the way it will be affected by the holidays:
Kids with special needs are often anxious about changes in their daily routines. Unexpected surprises will not necessarily be met with enthusiasm. Preparing children with autism or anxiety disorders ahead of time for the holiday trip will benefit them greatly. Talk about the trip’s daily itinerary, places the family will visit, and what the hotel and food will be like.
Squidoo advises setting aside a safe space for your child to retreat to if their sensory barriers are breached:
Everybody gathering at your house for dinner? Then make your child's room off-limits to everybody but him/her. Encourage your child to use their room as a refuge when things get overwhelming.
Aliki McElreath wants parents to remember that there is a lot of extra, overwhelming noise around during the holidays:
Holidays are noisy. There is no way around this. Most kids are able to process out the noise, or to use instinctive coping skills to deal with extra sounds and activity. [...] ...a child with an autism spectrum disorder cannot process the excess volume, and to him the sounds become inseparable -- a cacophony of senseless noises that are actually physically painful, even if he doesn't react in classic ways to perceptions of pain. If you see your child become over-hyped ... or upset, take the time to help him find a quieter place, even if he resists this. Even a short time away from all the sounds can make a huge difference.
It is critical to be sensitive to your child's needs during the holidays, and give them space to self-regulate. If your child has coping behaviors that your family finds odd but aren't actually inappropriate, then your family will need some educating. Humor can help. Here's something I wrote four years ago, to help our families understand some of Leo's stims:
Let Me Stim, Let Me Stim, Let Me Stim
(To the tune of "Let it Snow, Let it Snow, Let it Snow")

Oh, the holidays are coming
And that means that I'll be bumming
Unless you can go out on a limb, and
Let me stim, let me stim, let me stim

It's my favorite way of coping
And it calms me so I'm hoping
You won't feel the need to look grim, just
Let me stim, let me stim, let me stim

When it's finally time for bed
Please don't make me give up my green straw
Or I might never go to sleep
And all of your nerves will be raw

I'm not hurting anybody
Though to you I might look nutty
Don't you folks have a tree to trim??
Let me stim, let me stim, let me stim!
I don't know if it's possible for families of children with special needs to eliminate holiday stress altogether, especially for kids on winter breaks whose routine is disrupted, and who as a result need to lean more heavily on their parents or caregivers. But we need to jettison the idea of hoping for the best -- instead, we need to plan meticulously for the reasonable.


A version of this essay appeared at