Enjoying Your Winter Holiday Season

Sometimes, enjoying the holiday season can feel more like surviving. With changes in routine, too many social events, and too little sleep, the countless unknowns can create unique challenges for individuals with Fragile X syndrome.

We want you to enjoy the season, so we’ve gathered a list of activities, tips, and advice to set you up for success. Each person with Fragile X syndrome is different, so what works for one may not work for the other. Finding what feels right for your family is the most important thing — it might even lead to a special new tradition!

Managing a Change in Routine

One of the biggest challenges of the holiday season is the shift in routines. As school and work schedules change for everyone in your home, sleep routines may shift, you might have guests staying with you, or you may be traveling yourself. These disruptions can cause stress, making preparing for this busy time even more important. Here are some tips to help:

1. Create A Special Holiday Routine

Try to keep as much of your usual routine as possible while adding in holiday events and plans. Use tools like visual schedules, calendars, or even mobile apps to clearly show upcoming events and help set expectations.

Learn More: Check out the valuable tips in the webinar “My Child is Home, Now What? Keeping a Routine,” presented by Dr. Rebecca Shaffer, director of psychological services for Cincinnati Children’s Fragile X Treatment and Research Center.

2. Create A Manageable Holiday Schedule

Be sure you include breaks and downtime. You don’t have to attend every event! This will (hopefully!) allow you to navigate the season with less stress.

3. Prioritize Restful Sleep

With all the changes in routine, maintaining a consistent bedtime and wake-up time can help ease transitions and support everyone’s well-being during the busy season.

Learn More: For helpful tips on supporting healthy sleep for individuals with FXS, see our treatment recommendation, “Sleep in Children with Fragile X Syndrome.” Also watch “Improving Sleeping in Children & Youth with Fragile X Syndrome,” a presentation on common sleep problems and strategies, including assessments, behavioral techniques, and medications commonly used to treat sleep problems

4. Prepare for New Routines

If you anticipate changes to your typical routine, such as greeting guests, sitting at the table to eat with others, or using a new visual schedule app or resource, be sure to practice these new routines or tools a few times in advance. Practicing ahead of time allows you to get comfortable with the changes and helps set everyone up for a more successful and enjoyable experience.

5. Consider Sensory Strategies

Integrating sensory strategies into activities and routines can help promote success! Hyperarousal and anxiety can be ever-present for people living with FXS, even when they may not be showing outward signs and are participating in a preferred activity. Using many of the strategies shared below can help.

Learn More: Watch “The How Toʼs of Sensory Diets in Fragile X Syndrome.” Tracy Murnan Stackhouse discusses sensory diets, the occupational therapy intervention strategy designed to attain and maintain appropriate daily arousal states.

Attending Get-Togethers

It’s important to consider how you will measure success for get-togethers. While it’s easy to get caught up in feeling like you must stay for the entire gathering, it’s most important to focus on your goal for success.

Is your goal to enjoy the meal, join everyone for dessert, or simply participate in some part of the get-together? Set a clear goal for yourself or your loved one, and remember that it’s perfectly okay to leave when it feels right. Leaving on a high note helps ensure the experience remains positive and enjoyable without becoming overwhelming. Here are some things to consider:

1. Prepare for the Event

Discuss the event together in advance and consider what might be needed to help everyone feel comfortable. This could include bringing comfort items such as headphones, a favorite toy, or a preferred item like a cup or a blanket.

To make the experience feel more familiar, use strategies like visual schedules, social stories, short video recordings of the event location, and photos of the event space or people who may be attending.

Having “side-dialogue” conversations can also help create predictability and clarify what to expect. Preparing ahead of time can reduce anxiety, ensure that everyone feels comfortable and ready, and set the stage for a more enjoyable and successful event.

Learn More: Find helpful tips for preparing in “Strategies for Day-to-Day Life.” Tracy Murnan Stackhouse and Sarah Scharfenaker provide an assortment of strategies that are drawn from evidenced-based practice and knowledge of the neurocognitive development of children with FXS.

2. Food

Offer to bring a favorite food that can be shared, ensuring you and your loved one have something familiar to eat while contributing to the event.

3. Singing

Singing, especially songs like ”Happy Birthday,” can sometimes present challenges. Ask if there are plans for a singing activity at the party, and if so, request a heads-up so you can take a break from the party if needed.

4. Quiet Space

Ask if there is a room or place you can go if needed. Whether it’s for a break from the commotion or simply to eat in peace, asking the host ahead of time will help ensure that space is available for you when and if you need it.

5. Plan a Movement Activity

Consider a gross-motor activity, which is an activity that involves large muscle groups throughout the entire body. You could spend time outside walking, running, or playing a game. Sometimes, basements or other areas of the home have a good place to host a gross-motor activity safely. These activities can be calming and help with the regulation of the body and mind.

Learn More: The webinar mentioned above, “The How Toʼs of Sensory Diets in Fragile X Syndrome,” also provides tips for planning movement activities.

6. Know When to Leave

Thinking ahead about when you might need to step away can help, whether it’s leaving early or simply taking a break if things become overwhelming. If the individual with FXS becomes upset, model the behavior you want them to achieve by staying calm. Use visual or physical prompts, slow down, lower your volume, and simplify your words to help create a calming environment and guide the situation.

Remember, it’s okay to leave when needed — focus on all the successful moments that have already happened and know that you’ve done your best to create a positive experience.

Being With Friends and Family, New and Old

Individuals with FXS can be very social; they like to joke, laugh, and please the people around them. Be flexible and understand that engagement is likely to vary.

The individual with FXS may avoid touching, hugging, speaking, or eye contact. Allow them to set the pace and be patient. As they become more comfortable with others, you may start to see more engagement, including eye contact.

Many individuals with FXS do not like loud voices or when someone gets upset. They also tend to mirror the emotions of those around them — both positive and negative. So, if you’re watching a game with passionate sports fans, be prepared — their excitement (or frustration) might just become contagious! Keep an eye on things if emotions start to escalate, whether it’s from new people or familiar faces.

If possible, share “10 Things Everyone Should Know About Fragile X Syndrome” with family and friends ahead of time. This can be an effective way to share the needs of your loved one and family and how — through their understanding — they can help to support a positive and successful encounter!

You Are Not Alone

Some families have shared with us that the holidays can feel isolating or lonely, especially while everyone around you seems to enjoy the unstructured, relaxed time.

Opening up to family and friends about how you’re feeling can be difficult. You may worry you’re the only one struggling; however, reaching out to a trusted friend, family member, or therapist can help you feel understood and less alone. Sharing your feelings can create a sense of connection and remind you that it’s okay to seek support during challenging times.

Many caregivers have expressed the challenges of feeling like they need to think 10 steps ahead, constantly preparing for every possible situation and scenario. The responsibility of helping a loved one navigate day-to-day life can be overwhelming, especially during the holidays. It’s important to recognize that even with careful preparation, there will be times when things don’t go as planned. You may need to leave earlier than expected, or the anticipation may become too overwhelming, and your tools and strategies might not work as well as you hoped. That’s okay! It’s all part of the journey, and being flexible is key.

Try to celebrate the successes with your loved one, such as watching a movie for longer than expected, transitioning through activities or spaces, trying new foods, wearing non-preferred clothes, or using tools and resources to ask for their needs.

Acknowledge the strength and flexibility needed to navigate the holidays. Focusing on these accomplishments can instill a sense of pride and help build the confidence to explore new routines and activities in the future. Every small victory is a step forward, and recognizing them can offer encouragement for what lies ahead.

External Resources

Please note that the external resources linked below are provided as options for your consideration. They do not constitute a recommendation or endorsement.

Holidays
A list of resources and stories developed with autistic adults, families of autistic individuals, healthcare providers, and other service professionals.

11 Ways to Make the Holiday Season Easier for Your Child with Autism or Sensory Needs
Ideas to take time out to prepare your children for upcoming festivities and make the season more fun for the whole family.

3 Ways to Help Your Child with Autism Have a Happy Hanukkah
Ideas to try the next time your child is struggling during the holidays.

Supporting Persons with Developmental Disabilities Through the Holidays
From Christian Health, NJ, ideas to create a positive time of celebration for each family member.

Going to the Movies
Two movie chains partnering with the Autism Society offer sensory-friendly movie experiences. Described as “lights turned up and the volume turned down,” and a safe space to express yourself through singing, dancing, walking around, or shouting! You’ll need to check local listings for further information.

• AMC Theatres Sensory-Friendly Films — Second and fourth Saturday of every month (plus Wednesday evenings for mature audiences).
• Regal My Way Matinee — Sensory Friendly Movies — First show of the day on select Saturdays each month at participating locations.

Thank you to Jayne Dixon-Weber who originally wrote and published this article as “Home for the Holidays: Making the Visit Comfortable” on Dec. 19, 2022. It has been updated as of Dec. 4, 2024.