Bag of tricks: the (special needs) holiday survival edition - FamilyEducation

Bag of tricks: the (special needs) holiday survival edition

December 16,2008

Ever since Scott and I got married, we have traveled back home for the Christmas holiday. We used to travel for Thanksgiving and Christmas, but once we became parents, traveling for two back-to-back holidays became pretty unmanageable. In the old, pre-kid days, and even in the days when L. was very small, we used to travel home at Christmas for a long block of days, and spread ourselves thin over family visits (both our families live in the same area--and for those of you who think this might make things easier, trust me, it does NOT). We have several friends who do the same thing every year, including a good friend of mine who travels for a ten-day block with her kids, spending an even half of it with one set of family, and the other with the other set. Another friend flies to the west coast ever year, for a marathon month-long visit with every family member they have there, and there are plenty. Over the years however, we have come to realize that we can only really be gone for about five or six days.

Most kids find travel disruptive to a certain extent, and parents always dread what travel does to their children's sleep schedules. As I've written before, my kids are good travelers overall, and every trip we've taken has always been more than worth the upheaval. There is, however, something about the Christmas holiday that is particularly disruptive for L., and for all kids who are on the spectrum, or who have sensory issues and/or anxiety disorders. The holidays bring a certain amount of stress and upheaval for everyone, and we have found that any event that comes with a tremendous amount of emotion attached to it is particularly difficult for L. to cope with. While a short trip during off-times of the year will be fairly uneventful for us all, a longer trip over a holiday, or for a purpose fraught with emotion and a lot of attached social anxiety, will have aftereffects that last for weeks after we return home. Last Christmas, for instance, for two solid weeks after we returned home, L. would only wear the exact same pair of pants every day. We slowly weaned him from that (although he will only wear one type of pants now), but clearly he felt anxious and unsettled, and clung to the familiarity of that one pair of pants, just as a very small child will cling to a soft and familiar blanket.

We have, over the years, accumulated a large repertoire of tricks for helping L. (and us) cope with the holidays. You can also find lots of resources on the Web in the form of articles like this one, and in books like this one. But the best thing you can do is sit down and make an effort to view the holidays through your own child's eyes--something that is not as easy to do as you might think--and to encourage your own family to do the same.

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 very small baby will resort to crying when she is overwhelmed, because she has no other way of dealing with it. An older child will leave the room or sit still, quietly overwhelmed by it all. But 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 (L.'s reaction) 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.

Holidays are exciting. Because so much of Christmas is about emotional responses to what's going on (excitement, anticipation, disappointment, joy), it can be a particularly difficult holiday for kids like L., who interpret many emotional responses as stress, and this is hard for people to understand. How can excitement over Christmas morning and opening presents be stressful? But it can be, because a child with an autism spectrum disorder may not be able to perceive excitement in normal ways. Many kids with autism have a "fight or flight" response to overstimulation, and many well-meaning relatives often interpret the overexcitability of a child as out-of-control happiness, when in fact the child is reacting to pain. Don't lose patience with your child if he/she is overstimulated or melts down at just the "wrong" time. Consider letting her open her presents first, and then set her up in a quiet corner of the room to examine them all.

Holidays involve lots of food. This is probably one of the hardest parts of the holidays for L. Being around a lot of people who are eating is very stressful for him. He will rarely eat much at all during holiday gatherings, so we often set him up with a plate of food somewhere else, or let him eat later, after the rest of the family has eaten. If a large family dinner is on the agenda, find a good spot for your child to sit, where he or she can feel safe. Don't force eating on him at that time. Instead, let him participate in the conversation and feed him either before or directly after the big meal. It's too much to expect the child to eat and socialize at the same time, and the eating part can always happen later.

Holidays lack structure. While most people like the timeless feeling of the Christmas week, those glorious days when you forget what day of the week it is, or what time you should go to bed, or how it feels to wake up to the blare of your alarm, some anxious kids find this lack of order and structure frightening. While we don't overstructure L.'s days when we are away, we do try to maintain the regular and comforting routines L. depends on: bed time baths after dinner, stories, warm milk in the morning, "rest-time" after lunch. We bring along his favorite books and his sleeping bag (perfect for travel--it provides a sense of continuity wherever we go). We find that L. transitions back to our regular routines when we do return home, if we stick to as many of them as we can while we are away.

One thing we have learned over the years is that family doesn't always understand our child's reactions to the holidays. We had to let go of this expectation early on. No matter how much your family loves your child (boundless, wonderful love), they don't live with him every day, and no one is as invested in understanding the ins and outs of your amazing, challenging, special child as you are. So try to be patient with family members. Gently offer explanations when you need to, but remember not to get too hung up on every single bump in the road. If your child's behavior does become an issue and you feel backed into a corner or judged, take a deep breath and join your child in some needed time away.

Trust me, you might need it more than you think.