Expert Name: Nancy Bernotaitis
Expert Title: Executive Director
Company Name: Good Works Farm, Inc.
Company URL: http://goodworksfarm.org/Home_Page.php
Short Bio: Nancy and her husband have three children, their youngest diagnosed with an autism spectrum disorder in 2001. Nancy has been utilizing biomedical, nutritional,
educational, and behavioral interventions with her son since he was diagnosed, and
believes God has given us all we need to heal ourselves. She is currently the Office
Manager of Integrated Connections: Autism & Special Needs Resource Center & South Dayton Hyperbaric, LLC. She is also the Executive Director of Good Works Farm, Inc., a future farmstead community for individuals with autism and is the President Emeritus of the Autism Society of America-Dayton Chapter, Moderator Emeritus for Moms Fighting Autism, former Assistive Technology Specialist for Goodwill/Easter Seals, and has served on the Ohio Autism Coalition, Miami Valley Autism Coalition, and a number of other special needs boards. Nancy belongs to several social clubs including Muddy Buddys Jeep Wrangler Club, Dayton Area Special Moms Group, Kettering Noon Optimist Club, The Well-Armed Woman, and is actively involved in The Dayton Vineyard Church. In her spare time, she enjoys yoga, meditation, writing, shooting, dancing, and spending time with her family. Her first book is set to be published in 2014.
SPECIAL NEEDS & THE HOLIDAYS: How to thrive, not just survive, the holiday season
"How to survive the Holidays" is a hot topic for special needs blogs this time of year. But is that all we want to do? Merely survive? With a little planning and some modified expectations, the holidays can be enjoyable for every member of the family, including those with special needs. You see, my husband and I have three children. The older two are typical and then we were blessed with Sam, our 16 year-old, who is on the Autism Spectrum. Our holidays used to be a whirlwind of activity, trying to squeeze every bit of fun there was to have out of the season. From ice skating and sledding, to cookie-making and Santa Claus. Sounds fun, doesn't it? All of us piled into the car, rosy cheeks and Christmas carols, on our way to another joyful event. Unfortunately, it never really looked like that. Most of the time, I was yelling at everyone to hurry while the kids bickered and whined and my husband grumbled.
Things really got interesting when Sam came along. A simple outing turned into a huge ordeal that ended with three kids in tears and me on the sofa with a cold towel over my face. All I wanted was a photo with Santa for the stocking. When Seth and Rachel were small, I made them each a stocking featuring their adorable photo with Santa on the front, embellished with lace and puffy paint. And there hung that naked stocking of Sam's. All I had, year after year, was another amazing shot of his tonsils and my arm holding him on a not-so-jolly-old Elf's lap. THIS is going to be the year, I thought. This year I'll get that photo and finish the stocking. Seth and Rachel were 10 and 9, respectively, and Sam was 4. I got a chocolate cookie to keep Sam happy while he waited and stood in line holding everyone's winter coat, my purse, and diaper bag, pushing the stroller, tingling with the anticipation that this was going to be the year. The older two quickly bored of the wait and were running amok, playing tag in and out of shoppers, in the main concourse. Sam was getting restless and no longer wanted his cookie so I added it to pile of things I was holding. I began to sweat as Sam grew increasingly impatient. "Just two more kids ahead of us, hang in there baby", I cooed to Sam. It wasn't working. He was straining against the seat belt and writhing his way out of his stroller. His picture clothes now untucked and askew, his face red and splotchy, chocolate drool running down his chin. I was ready to bail out on my perfect plan but I was trapped in line. Best to keep moving forward. I could tell Seth and Rachel were still in the vicinity from the chaos they were causing. I couldn't focus on them, I was on a mission. It was our turn and I dumped the coats on the floor to unbuckle Sam. As I did, he collapsed on the floor and began to tantrum. Amazingly loudly. Another $10 shot of his tonsils, a squished and melting cookie, sweat soaking into my undergarments, and still no photo for the stocking.
That was twelve years ago. So what have I learned since then? A lot. And I'm going to share what I've learned with you.
1. Prepare in advance.
Visual strategies are a great tool to prepare a child ahead of time so they'll know what to expect. You can use a picture schedule and social stories to show them where they'll be, who they'll see, and what they'll do.
Educate your extended family, especially those you don't see very often. Let them know what your child likes, doesn't like, what sensory issues they may have, and what they find comforting. If your child is on a special diet, this is a good time to ask them not to share their food with your child for his own well-being.
Plan to tag-team with someone else. If your child needs an adult shadow, it's a good idea to take turns with another trusted adult so you can socialize while someone else is looking after your child.
If your child is a picky eater or on a special diet, pack his food in his own lunch box. It will be comforting to him to have his favorite foods available and it will be less stress on you.
2. Modify expectations.
If the festivities will be at your house, your child should be able to find solace in his room without the expectation of sharing his belongings. If you'll be at a relative's house, ask if there's a quiet room where the child and adult can go to escape the chaos.
Choose activities based on the child's interests and tolerance level. For years, our one holiday activity has been a drive-through light show at a local park. When we choose activities he can tolerate, we all have a more enjoyable experience.
3. Simplify traditions.
For years, it was important to me that we make my grandmother's butter cookies from scratch at the holidays. Now we do slice and bake. Putting the sprinkles on is the part Sam enjoys so why stress out about the rest?
If your child likes to take the ornaments off the tree, get unbreakable ornaments and make a game of it. He takes them off, I put them on. Eventually, most stay on. We don't have a tree that would make the pages of Martha Stewart Living. There's been years when the tree had a baby gate around it, and years when it looked like a Charlie Brown tree by Christmas Eve. Who cares? It's okay to have a small table-top tree or no tree at all.
Be mindful that blinking lights might be over stimulating or trigger seizures in those prone to them. And speaking of sensory overload, stores this time of year are major sensory overload from Halloween through New Year's. If you can avoid stores and do your shopping online, go for it! Most retailers encourage online shopping by offering exclusive sales and free shipping. Take advantage of it!
All the senses can be overloaded, including our sense of smell. Scented candles, while enjoyable for us, can be overwhelming to a child with sensory dysfunction.
Some children resist any type of change, and that includes decorations. Be prepared to scale back the extent of decorating for a while or only put a couple of things out each day. You might actually learn to embrace the new, simple decorating scheme. I now only get out a tenth of what I used to. Not only is it less stressful on Sam, it's less work for me! Many of them are musical decorations and snow globes that Sam enjoys most. If he's happy, I'm happy.
4. Make wise gift choices.
Buy gifts based on the child's developmental level and interests. Give some gifts that are educational and some that are purely for fun. Lower your expectations. If your child receives a radio-controlled car and simply lines it up with his other cars, that's okay. It's not important that he play with it properly, it's important that he enjoy it. Remember that most times, our kids would rather have our presence than presents. If you can find a game or activity that encourages time together, that's probably a better bet than a solitary activity given to a child that already self-isolates. It's okay to give a 16 year-old bath toys if that's what he enjoys. There are many websites that offer guides for gift-giving, including Toys R Us' Differently-Abled Guide and Got-Autism.com's Holiday Gift Guide. Feel free to give them gifts that will make them happy even if they aren't a traditional or age-appropriate gift. For instance, if your child enjoys playing with your DVDs (lining them up on the floor, stacking them, etc.), get her a pack of blank DVDs or CDs and she'll be in heaven. Best of all, you won't be yelling at her not to scratch them up.
5. Enjoy the moment.
It can be very stressful trying to make the holidays perfect for everyone, I know. But if you allow yourself to simplify, lower your expectations, and appreciate the moment, you might be surprised how much more everyone really does enjoy them. Appreciate your child, in that moment, even if it's not picture perfect, because it won't last.
To finish the story, I did eventually get that picture with Santa for the stocking. It was a completely unplanned, impromptu encounter with Santa that resulted in a great photo. Never mind that Sam is as big as Santa in the photo. What matters is that the stocking got finished, it matches the others, and I never again attempted something so stupid. Happy Holidays!