What does your holiday season look like? Does your family participate in a large family gathering far away, or do you prefer something quieter and more personal close to home? Are you relaxed during the festivities or do you spend the whole day stressed out wishing for a few minutes of calm and understanding?
As a family affected by autism spectrum disorder you already know, there aren’t any ‘right’ answers. There are kids who love the lights and sounds of the holiday season, and there are kids who cannot walk through the frenzied mall or sit on Santa’s lap. There are children who enjoy opening presents, and there are those who don’t respond to gift-giving and leave the room. Some kids with autism sit at the table and eat the holiday foods, and others do not. Every child has different needs and limitations—and it’s okay. Your family is special and you should do what works best and makes you happy.
Our readers often mention to us how challenging the holidays can be, especially with the changes in sights and sounds and the expectations of extended family, so we asked several Autism Parenting Magazine writers for advice on how they celebrate and handle the stress of the season. Take a look as no two families sound alike. As we head into the holiday season, focus on creating together-time that works for your unique family. It doesn’t have to be perfect—it just has to be filled with love. Let’s celebrate!!
Kimberly Reeves, MEd
Ho, ho, ho….oh no! Another Christmas season is around the corner, and I am already prepping for the obvious challenges associated with the holiday season and my son’s autism. It’s not that Ry doesn’t get Christmas, he just does it differently than most people I know. And year after year, it has fallen upon me to remind to my family and friends about the complications and awkward moments in respect to gift giving and receiving.
Ry and I have our own family holiday traditions: How the Grinch Stole Christmas, the annual lighting of the community Christmas tree, lots of old school Bing Crosby and Perry Como music while making cookies and our Christmas Day tamales/snowshoe adventure. The lights, sounds, smells and bustle of the holidays have never been overwhelming to my son and in fact, he welcomes it all. Fortunately, Ryan does not have sensory processing issues and does not feel overwhelmed by all of the stimuli.
My difficulties surrounding the holidays begin with the gift list. My son is not into pop culture, plain and simple. He doesn’t care what his peers are wearing or need the newest, coolest electronic device(s) to meet his techie needs. He has never had a gaming system and flatly refuses to show interest. In a nutshell, Ry loves Broadway musicals, Sesame Street, programming old, beat up, hand-me-down computers and his bike.
Like most autistic children and adults, his interests are narrow, and that makes it very difficult to find the perfect gift for him. My family usually begins phoning right after Thanksgiving asking, “What can we give him?” My consistent reply for nearly two decades has been, “I don’t know, but as soon as I do, I’ll let you know!” After wracking my brain for days, I finally come up with a short list of “fun” presents and let my parents have first dibs on what they want to give him.
Once the gifts have been purchased and placed under the tree, the next issue is the opening of the presents. I think the last time Ry was really giddy for Christmas morning was when he was a small child, six or seven years old. His hobbies and interests weren’t as restricted, and he had that wonderful little person enthusiasm for Santa and presents. These days, if he opens a gift that does not interest him, he simply tosses it to the side and asks if there are more presents.
The uninitiated by-stander might view this behavior as rude or greedy, but we all know nothing could be further from the truth. Ry has no guile. He speaks his truth with very little filter and does not understand that his behavior might be off-putting. His social intelligence is not well developed and can be hurtful to those that don’t understand him.
I find myself managing the morning like a Momma on a mission and explaining and re-explaining Ryan’s behaviors so that feelings aren’t hurt. All in all Christmas in our household is not terribly different from most homes. There is laughter, the inevitable meltdown or two, good food, a chance to reflect upon the importance of family, and the inevitable end of the day exhaustion. Ry and I wish everyone a very happy holiday season! Love the Life You Live…
Kimberly Reeves, MEd, is a professor of biology at Whatcom Community College in the Pacific Northwest US. A firm believer in the value and strength of community, Kimberly has served as a board member of Families for Autism Care, Education, and Support (FACES) Northwest, a local summer day camp for children with autism in Whatcom County, Washington, has consulted with her local school district, and assists with her son’s Special Olympics activities. She provides informational support to families processing an autism diagnosis or struggling to understand and navigate their rights and responsibilities as parent advocates and guardians as outlined by the federal government. She and her son Ryan are currently co-authoring a book, Raising Ryan, and are enjoying this experience together. Kimberly welcomes questions or comments.Email: [email protected]
There were a few adjustments I had to make to my holiday expectations when I had children. Quickly, I learned that traditional traditions don’t seem to excite my somewhat non-traditional family. My daughter, who is not on the autism spectrum, and my non-verbal son, don’t love the thought of sitting by a warm fire and listening to The Night Before Christmas. If anything, they crave excitement.
Because of this, each year on Christmas Eve, “Sadder Claus” arrives. Dressed like a cross between Santa and a pirate, I…I mean, Sadder Claus, forces my daughter to battle him in a one-sided fight that seems to be fake on his part and very, very real on her part. After her inevitable victory, she receives a map with a key to two waiting presents for her and her brother.
I am fully aware that this tradition is insane. I’m not even sure how it morphed into something so involved. All I know is that I look forward to it all year and even my son, who seems ambivalent to most of the festivities, takes a small part in the showdown.
Not only has this taught me that it’s okay to make our own traditions, but it’s okay when Lucas doesn’t want to take part in it. Sure, I’d love for him to take a more active role and I search for different games he might enjoy. But, when there’s nothing that he’s interested in, I respect that. He may be seven, but he’s a person. The holidays are supposed to be fun for everyone. Being forced to take part in an activity, whether or not your parent thinks “this is what we’re supposed to be doing,” isn’t fun and it’s not fair to any child.
I have no expectations or demands from my children during the holidays. It’s their special days, too. I want their memories to be positive, and it’s not the activities that make positive memories. It’s the positive people around you. If I’m having a breakdown because my child with autism can’t hit a symbol on cue during The 12 Days of Christmas, that’s not a positive memory for him, me, or anyone else.
Just because my son doesn’t say “Merry Christmas” or “Happy Hanukkah,” doesn’t mean he shouldn’t get to have them. Honestly, my only goal at the holidays is to make sure my family is happy. If it takes a fireworks show to make that a reality for my wife and daughter, I’ll put one on. If it makes my son happy to ignore a fireworks show in favor of his iPad Sesame Street reruns, I’ll be happy with that too. As long as they’re all smiling, so am I.
James Guttman has been writing for 15 years and introduced his blog earlier this year. James writes about parenting both of his children (one nonverbal and one nonstop verbal), self-reflection, and all that comes with fatherhood. His mix of humor and honesty aims to normalize the way people view raising a child with special needs and shows that we, as parents, are all basically the same, regardless of the children we’re raising. You can like his page on Facebook and follow him on Twitter.
The holidays are stressful for every family it seems, but for an autism family, the stress is multiplied by the variables of the symptoms of the disorder. I have six children, three of whom are on the spectrum. They are all grown now and the stress of the holiday season has lessened for us somewhat. However, when they were younger, it was often very difficult to keep the ‘happy’ in the ‘happy holidays.’
My autism family also happens to be a Pagan family, so we primarily celebrate Yule or Winter Solstice which falls on December 20th, 21st, 22nd, or 23rd yearly, depending on the moon and sun cycle, as it is the ancient celebration of the longest night of the year. Many ancient polytheistic (meaning worshipping many Gods) cultures celebrate Winter Solstice (called Yule by Germanic peoples) which became the basis for the more modern monotheist (meaning worshipping one God) faiths’ winter or ‘yuletide’ holidays.
Some of our extended family who are Christian or non-religious celebrate Christmas Eve, and some celebrate Christmas Day. Santa Claus, who is one of our Pagan Gods, we call The Holly King, is tracked by NORAD on Christmas Eve. So we end up having multiple holiday celebrations all week at the end of each year.
My autistic children, like many alas, were not too well understood or tolerated by all extended family members so this made for some tense holiday gatherings at various extended family households. I found, through the years, that it was not worth the hassle or heartache of trying to get some relatives to accept my children and be flexible in the holiday traditions so that my children could attend happily. My best piece of advice for you for keeping your autistic children happy through the holidays is to be willing to skip out early or totally on some family events where others will not be accommodating to your children’s special needs.
Beyond that main piece of golden advice, I have a few more stocking stuffers of suggestions. Firstly, try to engage your autistic child in the celebration’s meanings in your faith and in other faiths by using picture books, cartoons, and such visual explanations. As I mentioned, NORAD tracks Santa, posting online visual clips of his progress on Christmas Eve as he flies around the Mother Earth delivering gifts. This is a great example of such visual tools. Many children’s picture books can be found of the biblical nativity story or the story of the Jewish celebration of Hanukkah. Many cartoons and TV shows like the beloved old Rankin and Bass Christmas specials also are great visual explanations of the holidays for children to watch and learn from. Local churches sometimes have living nativity scenes or live plays that can be wonderful visual lessons.
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Another suggestion I have is to let your children be as involved or as not involved as they are comfortable being. Decking the halls is one of my favorite traditions. Luckily for me, all my children enjoy it as much as I do. If they didn’t however, I would have let them skip the tree-trimming and play their video games instead while the rest of the family decorated.
Gift shopping at the mall might be too stimulating for an autistic child. Similarly sitting on the mall Santa’s lap for a photo might be too stimulating. Let the child participate on a smaller level if so. Maybe take him/her to visit a Santa in a local toy store with a shorter and quieter line…or let your child visit Santa alone in a home they are comfortable in or if they don’t want to meet the jolly ole elf, let him/her write him a letter or draw him a picture instead. My children usually enjoyed meeting Santa, but they all wrote letters with wish lists that they left in their stockings for the elves to pick up and deliver to Santa in the days leading up to Santa’s visit each year.
Perhaps take your child gift shopping in a well-known store like the grocery store to buy their gifts for their loved ones. Giving gifts is more important than getting them, I always thought, so I tried to let my children join in that tradition of our Yule holiday as much as possible. They may be more flexible about getting gifts…or maybe not. They might not be able to sit through a relative’s long holiday feast waiting for gift opening time and might need to be brought over only after the meal to open gifts. They might be rude about the socks they got not being the toy they wanted, or they might love the socks but hate the toy that is in the next gift bag and be loud in their displeasure. In your home, of course, this will not be a problem as you are used to such perfectly understandable behavior. Some distant relative might not be as understanding. If so refer back to my main piece of advice and cut that relative out of your child’s holiday time.
Lastly, I suggest you take the time to enjoy your holidays. Take some time ‘off’ and do the things that make your holidays happy. Let someone else take care of the kids for an evening and go to that holiday music concert your autistic child wouldn’t be able to sit through. Splurge on a gift for yourself. Eat the cookies that Santa leaves behind. Santa always leaves me some ribbon candy and chocolates in my stocking. Don’t forget it is your holidays as well as your children’s holidays. Make them happy holidays for you all.
Ginger Strivelli is the mother of six grown children, including three who are on the spectrum. She lives with two of her daughters in North Carolina. Ginger is an artist, writer, and avid world traveler.
We all can relate that life is full of constant change. A few we expect, like the changing of the seasons, which brings about the bustle of the holidays. Though some changes turn our world upside down permanently. For a large number of people, the holidays create a happy atmosphere in an otherwise cold winter season giving us a reason to cook, clean, and to shop for the people we love. It is a time where doorbells ring and smiling faces await from those we love who we have not seen in a while. The world just seems to be aglow with happiness. It seems to be a time where those happy smiles do not fade, and yet there is another side to the holidays that advertisements seem to keenly miss.
Autism is a word that most have heard and yet seldom understand. A word in which seems to capture all those happy and joyful sounds, smells, and changes, therefore, turning the season into something with a dismal outlook. Children with autism can suffer greatly as their world is rocked to its very core during these sentimental times that we as parents, glorify. Schedules are changed, smells are changed, and sounds are increased—life seems severely altered. Life with autism can bring those special events to screeching halt, but there is another way.
Being gifted, as I call it, with not only one child, but two children with autism, life has brought our family to that screeching halt numerous times. What my husband and I envisioned, what our families envisioned, what our society envisions as happy holiday moments, was changed permanently, first with the birth of our oldest son, and drastically again with the birth of our third son a little less than four years later.
So case and point, our lives seem to be irrevocably ruined, right? Well to a lot of spectators, sadly yes, but no, our lives just need to work a little differently than the rest of the world. Holidays for us do not look much different from the rest of the days of the year. Yes, we decorate, but very minimally. Yes, I cook, but nothing out of the ordinary and I do not force my children to eat anything they do not wish to, even if everyone expects me to. Yes, I shop, but I do it all online when they are peacefully asleep while I secretly listen to Christmas music that may upset them. You see, although American life promotes the flashy, the dazzling, the extravagant, life with children with special needs doesn’t have to look the same.
It has to fit you and your family, or it’s not peaceful and does not produce those silent nights. Sleep is hard to come by in my family, so the holidays for me mean that everyone is happily tucked in their beds at the expected times. No, it’s not exceptionally unpredictable, fun, and a party, but we have discovered how to survive in the midst of the bustle of the season. Over our almost 10-year journey with autism, we have found peace as a family in delivering our children the daily expectations carefully planned out the night before an event. For extra special gatherings, which we keep to a minimum, we even start speaking about it daily, weeks before these special holiday gatherings so that this way everyone has a more peaceful and happy holiday season.
I hope that you learn to enjoy the minimalistic aspect of the holidays and to cherish your child’s peace, at all costs, during this hectic time of the year!
Janele Hoerner is the author of Loving the Soul Beneath the Autism: An Interior Analysis of the Impact a Special Needs Child Bestows upon the Family. Her book details her son’s life, from in utero, to his diagnosis at three years of age, and concludes with the beginnings of his first year of school at five years of age. She believes her son is the greatest gift that she has ever received and wishes to help all individuals come to understand that people with special needs are an important part of our society. She lives with her husband and their five children in Lancaster County, PA.
This article was featured in Issue 82 – Finding Peace This Season