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Holiday Survival Guide for Families Raising Kids with Disabilities

Holiday Survival Guide for Families Raising Kids with Disabilities


Published: Dec. 15, 2022Updated: Jul. 2, 2024

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Cartoon of parent preparing for holiday celebrationsCartoon of parent remembering to make time for self-care

(If you know, you know.)

Making sure the holidays are accessible and sensory-friendly can make buying the perfect gifts feel like, well, child’s play. Throw in family members who don’t understand our kids, old-fashioned expectations of what kids “should” be doing, and unknown environments, and things can get tricky fast.

For some much-needed advice on anxiety, travel, sensory difficulties, and sleep and diet disturbances during the holiday season, we spoke with Psychologist and Founder of CARE-LA, Dr. Lauren Stutman, Registered Dietitian and Autism Nutrition Specialist Elisa Rocks, Educational Psychologist Stefanie Rushatakankovit (LEP, BCBA) and clinical Psychologist Dr. Lyre Fribourg (BCBA-D), both Founders of Carnelian Psychological and Educational Group, Clinical Psychologist and Chief Clinical Officer of Catalight Foundation, Dr. Doreen Samelson, and Occupational Therapist Katie Krcal (MSOT, OTR/L).

‘Tis the season to respect boundaries!

Whether it’s overwhelm from new foods or from sound, touch, or activities that aren’t accessible, what’s the one thing that can empower your child and make them feel heard? Consent! It’s important to offer choices and alternative activities that your child will feel comfortable with so they know they have options. This not only applies to those unwanted hugs and kisses but also to food, sensory experiences, and so much more.

  • Encouraging your child to exercise choice when it comes to the clothes they’re wearing may save you both from unwanted behaviors, especially with new, unfamiliar clothing. That oh-so-cute holiday outfit might trigger sensory overload and result in communication or behaviors that tell you exactly how far from “cute” your child feels!
  • Prepare relatives for your child’s preferences for saying hi and bye, and allow your child to set boundaries by giving them other options for “being polite.” In other words, don’t tell them they have to hug Uncle Jim because not hugging him will hurt his feelings. At first, this may be a little, er, touchy with some relatives, but consider this: Children with disabilities are often unable to choose when or whether someone touches them. In a perfect world, therapists, aides, doctors, and caregivers will prompt a child before assisting them — i.e., “I’m going to put my hands on your hips to keep you from falling, okay?” — but this doesn’t always happen. It’s our job as parents to teach our kids that their body is their own, even or especially when it relies on other bodies for safety. And this can start with suggesting a fist bump instead of telling them to accept that hug they really don’t want from a relative they barely remember.
  • Pick your battles and give your kid the autonomy to choose! Rushatakankovit who goes by “Mrs. Rush” — explains that talking with your child in advance about the kinds of things they might encounter at a holiday get-together can go a long way., “You want to prepare your child for what to expect but it shouldn’t be a lecture — it should be very collaborative,” she says. “They should have autonomy and choices on how to handle the situation. This will support their ability to have some control in the matter and also help support their executive functioning skills!” A great way to help your child do this? Rush advises modeling it. Showing anxiety or worries you may have can lead to other battles when trying to control the situation. If your child sees you being flexible, it will be easier for them to reciprocate.
  • When it comes to inclusion, Dr. Stutman reminds us that you can prep your child for what to expect from others, and help them create a script of what they want to say or how they want to introduce themselves — for example, what pronouns they want to use — so they have the words. You can also speak to family or friends and explain the importance of inclusion and your child’s preferences ahead of time.
  • If your child doesn’t like to participate in photos (especially when they know the photos might end up on social media), don’t make them. They should be allowed to say “no photos please”!
  • While togetherness may be what the holidays are all about, give your child control over when to take breaks from all the hubbub when they need it. This will likely need to be preplanned and balanced, especially if it involves an iPad and headphones!
  • Customize the fun for your child. If your child is an introvert, try not to schedule back-to-back events and family outings. They’ll need time to recoup by themselves, and if they’re already anxious and dysregulated, it’s asking a lot of them. If your child is more extroverted, they might love being included in all the holiday activities.
  • It’s okay to say no! “There's a lot of pressure to keep up with everybody,” Dr. Stutman tells us. But in this fast-paced world, it’s better to go at a slower pace. Taking this approach, especially during the holidays, can help with mental health for kids and family members.
  • Last but not least, enjoy the holidays and stick to your boundaries! “Limit what you say yes to,” Dr. Stutman says. “You don't have to say yes to every person; you have your own boundaries. In the end, your child is more important.” Dr. Fribourg agrees. “Go where you feel welcome,” she says:

Sugar, spice, and everything dietary-friendly would be nice

Navigating food allergies, dietary restrictions, and any type of meal requirements can be awkward, but don’t let that dampen the holiday spirit! Elisa Rocks has some alternatives to help you make sure your kid still has a great experience.

If your child has restrictions that don’t allow them to eat certain types of food, offer to prep a meal they love or a version of the food that will be there (i.e., a gluten-free option). Sometimes, family members mean well but don’t fully realize the seriousness of the situation. Making an announcement to the whole family rather than picking out the one person you know to be the troublemaker can solve this! For example, let everyone know, “This is serious. He will get really sick if he eats XYZ.” A general announcement before the event can go a long way, in addition to priming your child about what to expect.

(In addition to Rocks’s practice, she also writes for the Autism Nutrition Library — a great resource for recipes, supplements, diets, and nearly everything related to nutrition for autism!)

If your child doesn't have serious food allergies but there are foods you generally try to keep out of their diet, take it from a dietitian — it’s okay to be flexible around holidays! “Making those allowances is okay, it’s human. You can get back on track after the holiday. Having that flexibility and sense of normalcy is huge.”

For kids who get overstimulated with a large variety of food and a loud atmosphere, Rocks says having an exit strategy is a gamechanger. Being able to decompress in another room can be incredibly beneficial. Saying something along the lines of “Sit with us for two minutes, and then you can go in the other room” can allow your kid to still get the family dining experience for a short period of time. Try setting expectations for both your child and your family. Of course, not everyone will understand, and you may get some eye rolls, but it may help to explain that sometimes different food and lots of excitement can be overwhelming to some of us. As Rocks explains, food in itself is SO overwhelming! Looking at a table full of new dishes, smells, and people you’re not used to is a lot.

Some kids become so overly stimulated that they stop eating or lose their appetite. If your child is prone to not eating in stressful situations, feed them beforehand! There is no shame in eating before the holiday gathering begins. Rocks says that not only will the food overwhelm feel less intense, but you also won’t have to worry about low blood sugar or hunger spells. While everyone is eating, your kid can keep busy with an activity or bring an iPad to the table. As Rocks says, this is more common than you think! Because the screen strategy is commonly used with kids at restaurants, it can work the same way at a holiday party. Going to a restaurant can also be a great way to practice being in a setting with different foods and lots of noise.

If your child only eats a small selection of foods, don’t stress. As Rocks explains in this clip, holidays are not a time to try new things.

All I want for the holidays is . . . more sleep

The interruption of a normal schedule as well as excitement, anxiety, and other big emotions can disrupt normal sleep schedules. Like many of us, if kids don’t get an adequate amount of sleep, they’re going to have a harder time being social, and it will be much harder for them to cooperate or concentrate with that sort of fatigue. Sleep is such a big factor in a child’s behavior.

So what can parents do to ease our kids’ sleep troubles, whether they result from traveling across time zones, staying up later at grandma’s house, or being unable to fall asleep in a different bed? As routines change during the holiday season, Doreen Samelson says, “It doesn’t matter where they fall asleep!” She explains, “There are cultural and specific family routines that come from a level of comfortableness about putting kids in bed with them or not putting kids in bed with them, and I think that’s an individual choice.” In other words, if your child sleeps better with you during times of big emotions or different locations, that’s okay!

The best thing you can do is try to stick to that original sleep routine as much as possible. For example, if you’re traveling across different time zones, having an earlier dinner to keep the same bedtime may help with the adjustment process on the first day. You can also ease into the change by slowly shifting your child’s bedtime a few days before your trip if that will help with the different time zone when you get to your destination. As Samelson says, the less disruption you can cause, the better!

As Samelson explains, change is particularly hard for our kids, so we need to prepare them as best we can by using tools like transition prompts and visual schedules.

Tips for traveling away from home

For kids with disabilities and their families, travel itself can be tough. Managing behavior and expectations during uncontrollable conditions in a car or on a plane is challenging. As always, stick to your routine as much as you can and make sure everyone is prepped for change. Having extra snacks, activities, and comfort items can make the experience smoother. Prepare bathroom breaks and prime your child, telling them when and where these designated stops will take place.

One of the best ways to prep kids for new things such as staying overnight in an unfamiliar place is to “do some research and get some pictures of where they’ll be staying,” says Dr. Stutman. You can prep them for the entire journey by showing them a picture of the plane, the hotel, or a relative’s house.

You can also bring something from home that is familiar and comforting. “Bring a familiar smell,” Dr. Stutman says. “You can have a familiar stuffed animal or bring a blanket or a pillowcase from home. A lot of things can transition from home to a new place in order to make it feel more comfortable. The more you prep them, the more prepared they’ll be.”

Here’s what one Undivided parent recommends to make your own travel Social Story:

Make a book (such as a Word document with a picture and one sentence for each page) to prepare for the trip. Example: “First we will go to the airport, then we will be on the plane, then we will go in a taxi, then at last we will get to Granny's house.” Don't leave anything out! Afterwards, make a book of photos to talk about memories of the trip. Your child can look through these memory books all the time but especially before traveling. You can take photos of them doing everything for future books! Include a page about how things might change along the way, but we can cope with hard things.

And above all, prepare for behavior challenges! Chances are your patience will be tested at some point during the trip. Take a second and think about some strategies you can use to regulate your child AND yourself. Setting ground rules can be a great way to create structure and set expectations. Repeating these rules or writing them down for your child can help. If possible, make sure your kids get some physical exercise beforehand so that they’ll be tired enough to sleep or at least feel less anxious during long periods of sitting.

If you’re traveling by air this holiday season, check out our article Airplane Travel Tips for Kids with Disabilities. Using TSA PreCheck and TSACares can destress and streamline your time in the airport. Airline clubs and lounges will often have kids’ rooms with cartoons, games, and soundproofing if you need a quiet place to relax in between security and boarding.

We’ve crowdsourced other tips and tricks from Undivided parents and staff. Check out their holiday travel tips!

5 tips for traveling with kids with disabilities over the holidays

It’s beginning to look a lot like . . . sensory overload?

For kids with sensory processing issues or difficulty processing information from the senses, the holidays — visiting family, buying and un/wrapping gifts, food prep, lots of events, too little sleep — can create feelings of overwhelm, overstimulation, and confusion. So what can parents do to ease kids’ sensory overload and help them enjoy the holiday fun? Prep, prime, and plan! Empower them by having an escape plan and/or safe word ready if they need to leave a stressful situation and hide out for a while.

“All kids typically feel good when there’s a plan in place,” Dr. Stutman tells us. Parents can make books with their kids, whether with writing or art, that explains what is going to happen, when, where, and even why. You can use the book to practice with your child “so they feel like they have an internal representation of what to expect,” she says. “And that’s far less frightening.”

Toys, tools, gadgets, and assistive technology can be your best friend when it comes to planning for the holidays, especially when sensory overload and anxiety are involved. It’s not a one-size-fits-all model, so knowing what your child’s unique needs are can help you find the best tools for them. Some gadgets Dr. Stutman recommends are noise-canceling headphones, pop-its, fidget cubes, chew necklaces, magnet balls, squishmellows, and fidget rings.

“Th​​e key is really to know your child,” she says, “because some kids love the sound of clicking and other kids can’t stand it. Just try them out with your kids. See which ones work — for travel, the smaller, the better. You can place the items in your purse or in your pocket, or you can give them their own little sensory regulation bag to carry with them if they are responsible.”

A lot of these tools help kids feel grounded in the present moment instead of focusing on what’s causing them worry or anxiety in their environment. They can also help regulate emotions when things feel overwhelming. We know that entering into new and unfamiliar social situations can create anxiety and stress. If your child has a hard time regulating their emotions, priming them and practicing social skills beforehand can help them anticipate social situations and manage their emotions in real time. Dr. Stutman adds that being attuned to our kids and looking for signs that they’re feeling dysregulated can also help. “Are they balling their fists? Are they slouched down and looking sad? Are they participating or not?” She also recommends bringing a book or tablet for them, just in case.

Walking in a strengths-based wonderland

A strengths-based approach helps parents include their kids in the holiday fun without feeling left out, so they can participate in activities in their own unique ways and gain confidence in social settings. If, for example, all the kids at the holiday party are putting on a play for family and friends, you can think about what role your child could take on. “If they can’t memorize lines, maybe they can be the director,” says Dr. Stutman.

Parents can create holiday fun that supports their kids’ unique needs. Many kids with autism, for example, prefer sameness, so Dr. Stutman suggests doing the same traditions every year. You can watch the same movies and eat the same food every year as a family, then light the tree or the menorah. They may end up enjoying these traditions more than a neurotypical kid might.

For kids with ADHD, she recommends that parents plan a lot of activities that are action-based, where kids can move their bodies. This can include going out in the snow or looking at the lights around the neighborhood.

Last but certainly not least, Dr. Fribourg reminds us that “it’s important to build happy memories!” The holidays are a time when children should have experiences that bring them joy, so try to end on a good note as much as possible. Here’s how:

How to have a sensory-friendly summer

While most kids can't wait to dive into the sandy beach days, fun family parties, and the dazzling Fourth of July fireworks, our kiddos might find the sights, sounds, and feels of summer a bit overwhelming. Summer can be a real challenge for kids and parents alike, but guess what? A little preparation and planning can help kids with sensory issues get the most out of summertime. Occupational Therapist Katie Krcal has these tips for families:

Tips for summer parties

Socialization & overwhelm

  • "Identify a safe space: discuss and locate a safe space for the party. This can be any safe location away form the action of the party. I typically recommend a bedroom or your car. If you choose the car, make sure your child is attended by an adult at all times and the air conditioning is on. In that safe space, bring some preferred comfort items, soft music, or anything that helps your child calm.

  • Identify a signal: it is so important that we are proactive in preventing overwhelm. This can involve knowing your child’s nonverbal signals that they are approaching overwhelm. For older children, you can create a signal or a secret word that means they need a break. Be sure to grant this whenever possible.

  • Don’t push it: advocate for your child with your friends and family. If your child has difficulty being around groups, greeting others, or playing with peers, discuss this with the adults at the party. Help your friends and family understand that this is challenging, and to not push greetings, engagement, and to grant breaks."

Food

  • "Safe foods: pack a few safe foods to ensure your child will not go hungry or feel overwhelmed by the food options at the party.

  • Food selection: let the child be involved in creating their plate. If it is a buffet, have the child walk along with you an choose what they would like on their plate. Try and take a backseat approach to this, gently guiding them down the line and not forcing any items to go on their plate that they don’t want to."

Sensory challenges

  • "Noise: summer parties can be full of noise. Music, conversation, splashing, fireworks all going on at once can overwhelm anyone. To assist, bring some noise cancelling headphones and identify a quiet space that your child can take a break in when it gets to be too much.

  • Touch: summer parties are often filled with touch based games like water balloons, swimming, sand, and crafts. Help your child engage at their speed. If they want to skip an activity, don’t force them. Let them engage at their level, modeling engaging in crafts using tools like a paintbrush or a sand shovel.

  • Movement: summer parties are filled with opportunities for movement. Activities like swimming, tag, slip and slide, etc. can help sensory-seekers engage in activities and get the input they need. For children who are hesitant to movement, help them engage at their level. This could include some floating pool toys at the steps of the pool, engaging in seated party games like sidewalk chalk, and being the person who applies the dish soap to the slip and slide.

  • Light: assist with light sensitivity on those sunny summer days by using some protection like sunglasses or hats. Also, get the kids involved in a shady spot, or playing hide and seek.

  • Heat: summer parties can be hot, especially if they are in a park or with limited shade. Pack a few things to beat the heat. This can include lots of water and cold, hydrating snacks. Some of my favorites include fruit, cucumbers and a popsicle, if available. Other items include cooling towels, portable fans, and sun protection."

Tips for the beach

  • "Prep: if this is your child’s first trip to the beach, prep them for the sand. Get some kinetic sand, or a sand box, and work your way up to a visit to a local lake or ocean beach. This way they are familiar with the feeling of the sand before your big summer travel.

  • Shade: provide shade for your child. There are several options out there for a range of beaches and budgets. Some tents can double as shade and a break spot, like this one.

  • Sand: some kids have difficulty with the feeling of sand. While it always feels like sand gets everywhere, there are a few things we can do about it. Wearing a quick drying rash guard can help kids dry quickly and protect their body from sand to some degree. Having a space where the sand is covered is another great way to provide a break. Having some water for kids to rinse off with is another idea. This can be the ocean or lake, or a simple bucket of water is rinse with."

Tips for fireworks

  • "Prime kids in advance: discuss that there may be fireworks in the days leading up to the holiday and on the day of. Describe the sounds to them, and maybe watch a YouTube video or two. Also talk about the duration of the fireworks show, if there is one in your area. This way, they can hear the sounds at a controlled volume.

  • Provide sound protection: this can look like noise-canceling headphones, ear plugs (like Loops for older kids), or simply teaching them to cover their ears. As a parent, you know what level of protection they need best.

  • Discuss a safe space: if you will not be home, talk about a space in advance where your child can go if they are feeling overwhelmed. I recommend an inner room of a home or even the car. We are aiming for quiet and cozy.

  • Bring a comfort item: this can help them regulate a little more.

  • Co-regulate: you are your child’s biggest source of regulation. Be there with them and model coping strategies like deep breaths, wearing ear protection, and simply being a calming presence in the midst of chaos.”

The gift that keeps on giving: self-care for parents

Surviving the holidays also means taking care of yourself. As you’re planning and preparing to meet your kids’ needs, remember to incorporate some self-care for yourself. “Too many people feel that doing something for themselves is shameful or hedonistic, but the truth is that if you’re not taking care of yourself, you’ll have a harder time taking care of your kids,” Dr. Stutman tells us.

Taking care of yourself and your mental health will not only fill you up to better take care of your kids, but it’s also a great way to model self-love and self-care. Change happens from the top down, which is a good reason why self-care for parents is so important. Dr. Stutman recommends child care, massages, complaining (when appropriate), and more!

Above all, Dr. Stutman says, remember to manage your expectations and don’t be too hard on yourself! It’s the holidays: kids will probably stay up late, wake up too early, eat tons of sugar, and get cranky. There’s no such thing as a “magic bullet” to make everything run 100% smoothly, as much as you plan ahead. “Transition is hard for all kids, and it’s especially hard for kids that have different needs. By expecting that there’ll be a shit show or two, we’ll be less disappointed, less angry or frustrated with our children and ourselves. And we’ll be able to say, ‘you know, right now, it’s like this.’ And that should be the parents’ mantra. ‘Right now. It’s like this.’”

Contents


Overview

‘Tis the season to respect boundaries!

Sugar, spice, and everything dietary-friendly would be nice

All I want for the holidays is . . . more sleep

Tips for traveling away from home

It’s beginning to look a lot like . . . sensory overload?

Walking in a strengths-based wonderland

How to have a sensory-friendly summer

The gift that keeps on giving: self-care for parents

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Author

Lexi NovakUndivided Writer and Membership Coordinator
A dedicated writer taking complex topics and breaking them down into everyday language. With experience crafting content across digital mediums, she has supported editorial and production teams in both news and film. Lexi is the oldest in a set of triplets, raised by a compassionate mother and special education teacher whose life mission is to make sure every kid experiences joy. Lexi carries forward her mother’s passion in writing. #### Reviewed by Adelina Sarkisyan, Undivided Writer and Editor Jennifer Drew, Undivided Senior Editor #### Contributors Stefanie Rushatakankovit, LEP, BCBA, educational psychologist Dr. Doreen Samelson, licensed clinical psychologist and chief clinical officer at the Catalight Foundation Elisa Rocks, registered dietitian and autism nutrition specialist Dr. Lyre Fribourg, BCBA-D, clinical psychologist and co-founder of Carnelian Psychological and Educational Group Dr. Lauren Stutman, Licensed psychologist and founder of CARE-LA

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