Fort Bend nonprofit offers tips for taming the chaos
Hope for Three, a Fort Bend-based nonprofit whose mission is to raise community awareness and provide assistance to families with children on the autism spectrum, offers tips for surviving the holidays. Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development, characterized by impaired communication, repetitive behaviors, and hypersensitivity to sensory stimuli, among other things.
While most studies estimate the prevalence at 1 in 88 school-aged children, including 1 in 54 boys, parent surveys show the number may be as high as 1 in 50 children, so the chances are that you know – and will celebrate the holidays with – someone affected by ASD.
“Even under the best of circumstances, holidays end up being nearly equal parts celebration and stress for everyone,” says Darla Farmer, Founder of Hope for Three. “But for autistic kids and their families, the holidays can be downright nightmarish. Loud and crowded gatherings, unfamiliar foods, having company and house guests, even just departure from familiar routines can send kids reeling. But a little advance planning can go a long way toward making the holidays merry and bright.”
Tips to minimize meltdowns
• Plan, plan, plan, plan, plan. And plan some more. Map out the events, experiences and expectations that will comprise your family’s holidays. Think through the worst-case scenario for each situation, then make a plan to deal with it. Arm yourself with whatever soothes your child – favorite toys, books, snacks, electronics – and build in extra time to deal with meltdowns and mishaps.
• Let go of your plan. Yes, that’s right. Prepare for every eventuality you can imagine, and then just trust that everything will work out. There’s only so much you can control, so do your best, and hold onto your sense of humor.
• The internet is full of resources that can help you help your child cope. Check out websites like http://www.autismsocialstories.com/christmas/ . Social stories are a great way to prepare kids for novel experiences in a way that creates real understanding and minimizes anxiety.
• Know your kiddo. The behavior strategies that work well the rest of the year can and should be easily incorporated into holiday preparations. This isn’t the time to try anything new, or to abandon the tried-and-true.
• Lower your expectations. You and your family WILL make it to New Year’s. But sometimes keeping it together is the best you can do. Close out of Pinterest, put down the Martha Stewart cookbook, and make friends with minimalism.
Fort Bend families share what works for them
All of the families Hope for Three works with have learned the hard-won knowledge that communication is the key to success for gatherings with extended family. “We don’t want holidays to be awkward for family members who aren’t used to dealing with meltdowns, but we also want it to be a happy time for Mitchell,” says Lindsay Spradlin of Sugar Land, whose 5-year-old, Mitchell, is on the autism spectrum. “We do as much advance preparation as possible. We try to choose music and food that we know he’ll enjoy; we let him help with holiday decorations; we set his expectations for who will be coming to celebrate with us; and we try to make sure he has some quiet time or a nap before the festivities get under way.”
Spradlin says that, since even the best-laid plans sometimes go awry, she and her husband let their extended family and guests know the situation when they arrive. “If we’ve been too busy and Mitchell hasn’t gotten time to nap, we’ll give everyone a heads-up that he might be overtired and that they shouldn’t be concerned if he gets emotional.” Spradlin also knows when to say when. “If I can tell he’s just had too much, we’ll let him find a quiet spot to look at books or play on the iPad until he feels ready to rejoin the celebration.”
“For Aaron, waiting is the hardest part,” says Jennifer Santiago, whose 9-year-old has Asperger syndrome. “He’s OK with the noise and the changes in routine and all of that, but he knows Christmas is coming and he just can’t manage his anticipation.
Visual countdowns work well, and give him a fun way to mark time, so we’ll do a chain of paper loops with one to tear off each night, or an Advent calendar with a small treat for each day. Incremental rewards and a tangible representation of how much time remains help him deal with anxiety and impatience in a more manageable way.”
Sandra Newton always assumed that traveling was out of the question with AJ, now aged 7, and would never have considered something like a ski vacation until her husband persuaded her to give it a shot. “We took a test flight from Houston to Austin to see how he would do,” says Newton, “and it was great. We decided to try skiing, and he loved it!
There are so many things our kiddos can do if we give them a chance to try.” Newton also stresses the importance of communication. “When we fly, we talk to everyone we can. We let the gate agents know AJ has some special needs, so we can pre-board to give him extra time to adjust. We tell the flight attendants and nearby passengers that he’s autistic, so they’re understanding of any unexpected behaviors.”
But thanks to traveling with her survival kit – noise-canceling headphones, lots of favorite snacks, some small toys, and the iPad loaded with his preferred apps – Newton and her family have had mostly uneventful flights. “AJ sometimes get frightened or homesick in the middle of the night, so we also talk with the front desk and hotel staff in case any guests report hearing a very upset child in the wee hours!”