A holiday season or an extended break can bring changes in routine, travel, and excitement, which can be especially challenging for individuals living with Fragile X syndrome (FXS). The disruption of familiar routines during the break, combined with the anticipation of returning to a more structured environment like school, day programs, work, or other activities, can heighten anxiety. This can lead to emotional ups and downs, making it harder for individuals to relax and adjust to returning to their routine, even if they are looking forward to returning.
Many of the strategies you might use to manage changes in routine from the holidays will likely be helpful to get everyone back to a typical day-to-day routine. Strategies such as frequent breaks and visual supports- which may not have been needed before the break- become key to easing back into typical routines. Everyone involved has a role to play in supporting the individual, helping to make the return to routine as smooth and stress-free as possible.
Strategies for Success for Educators, Employers, and Support Staff
Whether in a classroom, workplace, or community setting, it’s important to approach the return with patience, flexibility, and understanding. The following tips offer practical approaches for educators, employers, and support staff to foster a supportive and structured environment during this transition.
1. Review Expectations
Workplace, activity, or classroom expectations may need to be revisited after time off. Reinforce expected behaviors using simple, visual cues to help re-adjust to the demands of the routine.
2. Offer Extra Guidance and Visual Support
Cognitive flexibility may be impacted after a break, so be prepared to provide additional guidance and support. Visual schedules and resources can provide structure and reduce anxiety by providing clear expectations of the day’s events.
3. Start with Familiar Activities
Begin with activities that individuals enjoy and feel confident in. Offering choices of 2-3 activities can help provide a sense of control and comfort, whether in the classroom, day program, or work environment.
4. Avoid Complex Tasks
Avoid assigning long or overly challenging tasks right away. Plan shorter, engaging activities to ease individuals back into their routines without overwhelming them.
5. Provide Frequent Breaks
Recognize that individuals may have adjusted to less structured days or later bedtimes. Incorporating regular, short breaks can help them manage their energy and avoid frustration.
6. Incorporate Movement Activities
Movement-based activities, known as gross motor activities, can help individuals self-regulate or reduce anxiety and hyperarousal. Start the day with calming movements and include regular movement breaks throughout the day.
7. Allow Extra Time for Transitions
Returning to structured activities can be challenging, even when the next activity is something they enjoy. Including extra time to transition from one task or space to another and let them set their own pace
8. Observe Non-Verbal Signs
Individuals with FXS may have difficulty expressing their feelings with words. Watch for non-verbal signs of anxiety or hyperarousal, such as body language, facial expressions, or fidgeting to understand their emotional state. Avoid asking direct questions and consider utilizing side dialogues to communicate indirectly.
9. Provide a Quiet Space
If an individual requests a break or shows non-verbal signs of needing one, offer a quiet space to help them regroup and calm down if they become overwhelmed.
Strategies for Parents and Caregivers
As parents or caregivers of an individual living with FXS, preparing for the return to routine after a long break can feel like an extraordinary task. We recognize that so much thought and planning may be needed to return to a familiar routine or place, which can feel frustrating and overwhelming. Here are some strategies to help ease the transition back to routine.
1. Plan ahead
Connect with your loved one’s support team before the break or the return to the routine to proactively discuss strategies like visual supports, physical prompts, and frequent breaks. This ensures everyone is on the same page and ready to reintroduce helpful strategies if needed.
2. Be Aware of Your Own Emotions
It’s natural to feel anxious or worried during transitions but remember that your loved one is highly sensitive to the emotions of those around them. When you remain calm and confident, it can help them feel more secure and reassured. Be kind to yourself—it’s okay to have these feelings, and managing them can create a calmer environment for both of you.
3. Re-establish a Consistent Sleep Routine
If your typical sleep routine fell by the wayside during the break, a few days before the return to routine activities, gradually get back to the regular sleep schedule.
4. Communicate with Clarity and Simplicity
Model the behavior you want to see by using visual or physical prompts, staying calm, and slowing down your speech. Lower your voice and simplify your words to help create a calming environment. This approach reduces anxiety and makes it easier for your loved one to understand what’s happening next, helping them feel more in control.
5. Avoid Adding New Activities or Demands
Avoid introducing new activities or additional demands until your loved one has fully adjusted to the routine. Trying to take on too much too soon can be overwhelming.
6. Allow Time for Adjustment
Understand that re-establishing a routine may take time. Your loved one may need extra support and rest to adjust, and it’s okay if they need a few days to ease back into school, work, day programs, or activities. Be patient and reassure them that it’s normal to take time to get back to the routine.
7. Celebrate the Wins
Acknowledge and celebrate every success, whether big or small. Positive reinforcement can help build confidence and create a sense of accomplishment.
You Are Not Alone
Returning after a long break can be tough, especially for someone with FXS. With a bit of planning and compassion, you and the entire support team can help make the transition smoother. Some days will be easier than others, and it’s okay to adjust as needed. Patience, flexibility, and understanding are key—don’t hesitate to revisit strategies that have worked before.
about
Missy Zolecki
Missy joined NFXF team in 2018 after being an active volunteer since 2010. Missy organized several fundraisers and educational workshops while serving in her volunteer role. Missy is the mother of three children. Her eldest son, Matt, lives with Fragile X syndrome. Prior to joining the NFXF team, Missy had worked as a nurse for more than 20 years. She enjoys traveling and spending time with family and friends.