Whether you celebrate Christmas, Hanukkah, Kwanzaa, or Festivus, the next several weeks come loaded with certain expectations that you may want to revisit in light of the reality of autism.
We’ll start with some words of wisdom from Dr. DeOrnellas. Fortunately, we seem to be going through another period in our country in which SIMPLIFY is the byword. More than just a catchphrase, simplifying our lives at this time is crucial to the well-being of our families – especially for our children with autism. This is not the time to be Super Mom or Dad. Keep things simple, only do the things that you and your children really enjoy, and allow yourself the pleasure of doing less.
Prepare, prepare, prepare. Years ago, Dr. DeOrnellas introduced me to a wonderful resource: Social Stories from Carol Gray. If you’re not familiar with Social Stories, they are a wonderful resource. The goal is to create a story that tells children what behavior is expected in a new situation or a situation in which their behavior has been less than stellar in the past.
For example, if you have to take your children to Great-Aunt Harriet’s house, you and your children make up a story about what they are to do. This should be done a week or two in advance and can be read every day until the visit. Social Stories work, and they can be fun, too!
Social Stories can be as detailed and repetitive as you need. For example, you can show your children pictures of the people who are going to be at the celebration, and rehearse greetings. This serves two goals: behavior training and helping to reduce your child’s anxiety. You can look at a copy of the map and highlight your route and discuss where you might stop along the way. You can also plan what familiar CD’s you might listen to in the car. You can rehearse, rehearse, rehearse greetings and conversations. This will also give you a chance to take note of what seems to be daunting to your child.
I’m going to let Dr. DeOrnellas take the wheel for a while, because what she has to say is so good: It can go something like this…When we go to Aunt Harriet’s house, we use our inside voices and keep our hands in our pockets. We look at all the neat stuff she has, but we do not touch it. We keep our hands to ourselves and we don’t touch anything unless Aunt Harriet says it’s OK…. You get the drift. Social Stories prepare children for the unexpected and give them the tools they need to stay out of trouble. Social Stories aren’t just for the kids, by the way. It also helps if you prepare Aunt Harriet and let her know that Lulu does not want to be hugged, but Suzie doesn’t mind.
It’s a great idea to actually put your expectations and concerns in writing and share them with your extended family, if they’d be receptive. It’s also going to help you to clarify your own expectations. Not sure what to say? I have a great starting point for you. More than a decade ago, Viki Gayheart wrote a “Dear Family and Friends” letter from the perspective of a child with autism. It has stood the test of time, and can be found at http://www.danasview.net/holiday1.htm
Some of the tips include:
- The holidays may be fun for many people, but people with autism find a break from their routine to be the opposite of fun;
- Others should not be offended (or surprised) if the person with autism needs to take some breaks from socializing;
- Many people with autism find it difficult to be touched, so exuberant greetings and hugs may not go over well;
- Dressy clothes may present sensory challenges; and
- What appears to be bossiness is actually an attempt to feel safe and in control
Author Gayheart closes the article with a plea for empathy: “I will find my place at this celebration that is comfortable for us all as long as you'll try to view the world through my eyes!” I really appreciated this letter, as it forms a great outline for some of the major issues that we face when we take our act on the road for the holidays.
Keep surprises to a minimum. This theme was echoed by my friend Bobbie Padgett, a mom of five, who also happens to be Mrs. Kansas 2012 (how cool is THAT?), who said, “I think one of the secrets to surviving, and if you are lucky, enjoying, the holidays with special needs kids is to stay as structured as possible. I always found that things went more smoothly when our kids knew what to expect. Grandma showing up as a "surprise" maybe isn't a good idea if one of the children is going to be displaced by it or if it's going to require a great deal of change. Being out of school is fun, but sometimes it can be challenge for kids who really need routine.” Bobbie has lots more good stuff to say about lots of things, and you can find her at www.mrskansas.org/blog/ . (Tell her The Other Bobbi says hi.)
Let mealtime be peacetime, even if Junior has a grilled-cheese sandwich for Thanksgiving dinner. (Or, for that matter, for every meal for the whole visit.) Planning ahead when it comes to food is also a smart move. If your child has a short list of things that he is willing to eat, you’ll want to bring lots of Those Things wherever you go.
Granny may be very proud of her plum pudding, but Junior may think it’s just One Unfamiliar Thing Too Much. I also need to remember that my child on the spectrum isn’t going to be too keen on waiting for mealtime when she sees Just What She Wants on the buffet table. Social Stories can only take us so far, and she isn’t going to appreciate the social niceties of waiting until everyone has gathered and the preliminaries (greetings, saying Grace, etc.) are done. Yes, I am training her, but it’s a much slower process than it is with other kids. That doesn’t make her a bad kid any more than it makes me a bad mom. (I’m sure, Gentle Reader, that you could point out so many other reasons, but I digress…)
This is yet another area in which the holidays aren’t the time to be SuperMom and SuperDad. As Dr. DeOrnellas puts it: Many of our kids on the spectrum are very picky about food. I was talking to a Mom yesterday who said her daughter only eats brown foods so she was trying to add a little color to her diet by putting purple food coloring on a chicken nugget. Holiday foods can be very colorful and full of things we don’t want our kids to eat.
If your child is picky or is on a special diet, please bring food for him to any gathering. These are his comfort foods and forcing him to “just try it” is sure to set a meltdown in motion. This is not the time to try new things. There are plenty of other new things going on. Also, and most importantly, please warn the hostess that your child is not going to eat the carefully prepared meal, the fruit cake, etc. Do not allow someone else to try to force feed your child. That’s actually a great lead-in to the next step, which is:
Try to prepare friends and family. You can tell folks in advance about the challenges that may arise. If your child has a meltdown, it shouldn’t come as a shock to family and friends. Spelling things out at the start is going to be a big help. That’s not to say that everyone is going to be empathic or understanding, but it’s worth trying. Aunt Ethel may think that you’re a lazy parent because your child is playing with Legos or watching a favorite video instead of socializing, but Aunt Ethel may surprise you with her generosity of spirit if you talk to her in advance about what you plan to do.
Am I the only one who does this? I doubt it. This year, I actually started seeing Christmas decorations in some stores before Halloween. (And, by the way, what is up with THAT?) As the shopping season seems to stretch backwards towards Labor Day, I do my best to avoid getting too wound up. Part of my strategy is to do as much of my shopping as possible online. I don’t like the mall any more than my kid does, and this time of year, it’s a madhouse.
I also make people laugh by starting to address my cards Ridiculously Early. (That doesn’t mean that I finish them early, or even on time. Or at all.) This also gives me the time and space to involve my kids in the process.
Know When to Say When. Let’s say you’re traveling. If you need to stay in a hotel so that you and your child can have someplace neutral to retreat to, go for it. If you need to take two cars or to arrive for just part of the celebration, do what you reasonably can do and don’t feel bad about it. If it’s time to just have a quiet holiday at home with your immediate family, enjoy the peaceful holiday and connect with everyone by phone.
Dr. DeOrnellas has more to say about this point: If staying in a hotel is not an option and you have traveled 1500 miles to visit Grandma and Grandpa, you are probably staying in a strange (to your child) home with strange people. Work with Grandma and Grandpa to find a space where your child can get away from everyone. For example, set up a video and some toys in a study or unused bedroom. When your child starts to unravel, she can go to her special place to regroup. And don’t be offended if she chooses to stay there for most of the visit. I’m jumping in to put this next part in bold because, to me, it’s the most important sentence in this whole article: The way you will be feeling at the end of the visit (tired, overwhelmed, cross, ready for a nap, and ready to go home) is the way that your child feels the minute she gets on the plane.
Build in more respite than you think you’ll need. If you plan on doing a manageable number of things with a manageable number of people involved, you may miss some activities, but that may be what you need to do. I will bet you a dollar that you won’t be bored. If one spouse can stay at the hotel with a child or two while the other spouse hits the town with the other kids and the relatives, that may work too.
Consider autism-friendly vacation venues As autism awareness has increased, so have accommodations. Whether an outing is just a side dish to our vacation plans or the main course, it is wonderful to have some options. In the U.K.
Great White Way!
Yes, this impacts the whole family; that’s not all bad. In a post about last year’s holidays, blogger Brooke Potthast reflected on the challenges that autism had brought to Christmases past, and that, in retrospect, the “struggle and brokenness of autism” had, over the years, brought about unselfish beauty in her now-grown kids. I was really moved when I read her post, which you can find here: http://www.ageofautism.com/2010/01/honest-holiday-thoughts-from-an-autism-mom.html This is helpful to remember as we worry about whether our other children are being impacted. Every gift has its costs, and every hardship comes with hidden gifts. I have found this to be very true when it comes to living with autism.
Consider a simple, quiet holiday at home: We’ve talked a lot about going places and interacting with people. You may also want to consider something truly novel and mind-blowing: staying at home with Just the Fam. As I worked on this article, I realized that this would be the most loving and sensible choice for my own family this year.
Dr. DeOrnellas has personally enjoyed this approach: Everyone comes into the holiday season with their own ideas of how it is to be celebrated. I encourage families to sit down together in mid-November to talk about what is important to them. It is a good time to remind our children, and ourselves, why we are having these celebrations and what they mean to our family. I encourage each family member to name one or two things that they would not want to miss out on. For one, it is making sugar cookies and decorating them with Mom; for another it is driving around looking at Christmas lights or going to Midnight Mass, or singing carols, or buying gifts for families in need. Each family member has something that is special to them. Once you figure out what those things are, you can start to eliminate all the others. In our family, we were able to drop a lot of the commercial, retail aspects of Christmas (our holiday of choice). We don’t go to the mall or fix foods that no one really cares about. Instead of spending time and money on expensive gifts for each other, we now give small tokens of love and spend a fun day together playing games with our extended family. With the money we save, we “adopt” another family.
One reader, Venessa, likened a special-needs situation to life with small kids: you need to face it realistically, and next year won’t necessarily be like this year. In Venessa’s case, she and her husband decided to spend several holidays at home with just the immediate family when her kids were small. After considering the car trips or airport nightmares (pick your poison), the sleepless nights due to disruption of the kids’ routines, the difficulty of accommodating special dietary needs on the road, it was just easier to have simple holidays at home, and it gave birth to some wonderful traditions for them. When my children were infants, I was comfortable with saying NO a lot, and people mostly understood. Now that they’re a little older, I feel like I need to explain when I decline an invitation, but the truth is, I don’t. We have been sad to miss a couple of family weddings in a row because it would have been too much for our kids, but the extended family Really Does Get It. They were kind to invite us, but they also understood that it would have been a disaster. However you and your loved ones spend your holidays, I thank you for joining me this month and I thank you so much, Lorrie Servati and Nathan’s Voice, for letting me be your Featured Guest Blogger for November! It’s an honor for which I am truly thankful this Thanskgiving.
Bobbi Sheahan and Kathy DeOrnellas, Ph.D. are the wonderful authors of What I Wish I’d Known About Raising a Child With Autism; A Mom and a Therapist Offer Heartfelt Guidance for the First Five Years (Future Horizons, 2011). Portions of this article are excerpted from Chapter 3 of the book, which is available at www.fhautism.com and wherever books are sold. You can visit Bobbi’s website at
Outstanding blog post!
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