Daily Living (original) (raw)

The development of daily living skills is very important for the growth of all people with FXS. We developed resources using input from professionals and caregivers in the community to provide helpful insights and strategies on things like toileting, sleep, eating, socialization, and relationships. You will also find strategies for special events outside the home, such as holidays and airplane travel.

Table of Contents

For daily living, we’ve organized resources by subtopics. Check the table of contents for the complete list. We continue to add information on daily living strategies, including ideas on topics you have asked about. You will have an opportunity to provide your own ideas!

In addition to information on each topic, you will find the following, if available:

Daily Life and Support Strategies

Individuals with FXS and their families can thrive daily with the right strategies and supports. Understanding the learning style, communication needs, and sensory profile common in FXS can make everyday routines more manageable and meaningful. Whether at home, school, or the community, simple, consistent tools — like visual supports, routines, and positive reinforcement — can reduce stress and promote greater independence.

Here we provide some general strategies and suggestions for day-to-day life with a loved one with FXS.

Understanding and Predictability

Create routines and stick to them: Predictability helps reduce anxiety. Use visual schedules, calendars, or checklists to show the plan for the day.

Give advance notice of changes: If routines need to change, provide a heads-up and explain what to expect using clear, simple language or visual supports.

Use “first-then” language: Say things like, “First we brush teeth, then we watch a show” to help with transitions and build cooperation.

Family and Social Life

Practice outings gradually: Introduce new places during less busy times and plan for a short visit. Be sure to go when you aren’t in a rush and can be flexible. Celebrate small successes!

Teach social skills with role play: Practice greetings, turn-taking, or asking for help using pretend play or stories.

Encourage sibling involvement: Siblings can be wonderful advocates and companions when included and supported.

Collaboration with Schools and Therapists

Share daily successes and struggles: Keep open communication with teachers, aides, and therapists to build consistency across environments.

Ask about IEP supports and accommodations: Make sure sensory needs, behavior plans, and learning styles are addressed in school plans.

Be an advocate and a partner: You know your loved one best — don’t hesitate to speak up about what works and what doesn’t.

Self-Care for Caregivers

Take breaks when possible: Even a short walk, coffee with a friend, or quiet moment can recharge your energy.

Build a support network: Connect with other families, online communities, or local organizations. Youʼre not alone.

Celebrate progress: No matter how small, every step forward is meaningful. Give yourself credit, too!

Learn More

Strategies for Day-to-Day Life
Tracy Stackhouse and Sarah K. Scharfenaker, fondly known as “Mouse,” have experience with hundreds of families with FXS. This experience has led them to strongly suggest specific strategies — sensory, routine, and language–social–based — be integrated into daily life to best support individuals living with FXS. These strategies maximize coping and predictability while minimizing some of the common triggers for hyperarousal that, when not proactively managed, often result in poor behavioral adaptation.

Visual Supports

Visual supports and schedules can be game changers for individuals with FXS. Since many people with FXS are visual learners, these tools can really help with communication, transitions, and reducing anxiety. Let’s go over a few common types with friendly examples.

Daily Visual Schedule Template

1 pages,

Updated 04/17/2025

Helps show what’s happening now and what comes next. This can hep reduce transition struggles and help the person feel more in control. Works great for morning or bedtime routines, school or therapy schedules, and daily home routines.

First-Then Board

1 pages,

Updated 04/17/2025

Great for helping with transitions or when motivation is needed. Shows a task followed by a reward or preferred activity. Works well for getting through less preferred tasks, managing transitions, and reinforcing expectations.

Choice Board Template

1 pages,

Updated 04/17/2025

This offers a set of preferred options, helping increase independence and reduce frustration around communication. Works well for snack choices, playtime activities, and picking clothing or shows.

Feelings Chart

1 pages,

Updated 06/22/2025

Helps the individual identify and communicate how they feel, especially if verbal language is limited. Works well for emotional awareness, behavior regulation, and starting calm-down routines.

Learn More

Visual Wizardry: Using Visual Supports to Change Your Child’s Life
Using a variety of visually based supports with individuals with FXS — one main reason is that visual learning is one of their strengths.

Common Strengths of Individuals with Fragile X Syndrome

3 pages,

Updated 06/30/2025

People with Fragile X Syndrome (FXS) are unique individuals who bring warmth, creativity, and heart to the world around them. While FXS can come with challenges, it also comes with strengths. Here are just a few.

Fragile X Learning Styles at a Glance

Individuals with FXS often have a unique learning profile. Understanding this style can help tailor day-to-day supports that make learning more successful and less stressful.

Cognitive Strengths

Common Challenges

What Works Well

Start with our popular resource:

10 Things Everyone Should Know About Fragile X Syndrome
Strengths, challenges, and how to make the most of any experience, plus our list of the top 10 strategies for success. This is also available as a download, including a customizable template to share your tips and tricks on how each relates to your loved one with FXS!

10 Things Everyone Should Know About Fragile X Syndrome

4 pages,

Updated 04/17/2025

Strengths, challenges, and how to make the most of any experience.

10 Things Everyone Should Know About Fragile X Syndrome (Customizable)

5 pages,

Updated 04/17/2025

Strengths, challenges, and how to make the most of any experience —customizable. Share tips and tricks on how each thing relates to your loved one with FXS!

More of what works well:

Considerations for Communication

Learn More

Understanding the Fragile X Learning Style for Better Results
The specific phenotype of Fragile X syndrome results in a particular way of thinking, which we call the Fragile X learning style. It also phenotypically results in a presentation of anxiety and hyperarousal. These key aspects of Fragile X syndrome must always be at the forefront of our minds to guide any educational, therapeutic, behavioral, vocational, or independent living plan.

Eating

Feeding time can sometimes be a challenge for individuals with Fragile X syndrome — not necessarily because of behavior, but because of things like sensory sensitivities, motor skill challenges, or even medical issues. For example, the individual might stuff too much food in their mouth, avoid certain textures, or have low muscle tone in their mouth, which can make chewing and swallowing harder.

It’s okay if meals feel a bit overwhelming at first — patience and small steps will go a long way. Working with a speech or occupational therapist specializing in feeding therapy can help the individual with FXS learn how to use their mouth and muscles more effectively and get more comfortable with eating. And if they are a picky eater, a nutritionist or dietitian can also be a great support to help make mealtimes smoother and more balanced.

Learn More

Stopping the Stuffing: Therapy Programs for You and Your Child
If you’re the parent of a child with Fragile X syndrome, you’re probably very familiar with mouth stuffing. Mouth stuffing for kids with FXS is usually an adaptive means of trying to succeed with eating.

Common Feeding Difficulties and How to Make Mealtime More Successful for Your Fragile X Family
Kristin Burgess Watson highlights some common feeding difficulties ranging from over-stuffing to picky eating that individuals with Fragile X struggle with and suggests some strategies to make mealtime more successful for your family.

View all related →

Additional Eating Resources

Oral Sensory Seeking — Why is my Child Still Putting Things in Their Mouth?
This post explores oral sensory-seeking behaviors and reasons why older children might continue to put things in their mouths. (Source: Griffin Occupational Therapy)

Sensory Issues and Feeding
Nicola Pratt (SLP and feeding therapist) explains sensory issues and how they impact kids’ feeding and contribute to picky eating. (Source: FeedingPlus)

Sleep

Sleep challenges are something many families face — whether or not the individual has a disability — and it’s no different for individuals with Fragile X syndrome. Some of the most common concerns we hear from parents include difficulty at bedtime, taking a long time to fall asleep, or waking up frequently during the night. The good news is that there are helpful strategies out there.

Many families have found success using behavioral approaches, like creating consistent bedtime routines, and in some cases, medications have also been helpful. Every individual with FXS is different, so finding the right combination of support can make a big difference in improving sleep for both the individual and the rest of your family.

Related Treatment Recommendation

A two-week sleep diary often reveals patterns that can help lead to effective treatments. In addition, attention to physical and systemic findings, such as cardio-respiratory disease, facial or pharyngeal abnormalities, and obesity, can be a focus of the physical examination. Once data collection is complete, the clinician will need to decide if the child needs a more detailed evaluation.

Sleep in Children With Fragile X Syndrome

Sleep problems can be more frequent in children with developmental disabilities, including Fragile X syndrome. Ongoing support can play an important role. Depending on the presentation and primary disorder, treatment may include behavioral, pharmaceutical, and surgical interventions.

Improving Sleeping in Children & Youth with Fragile X Syndrome

This conference session discusses common sleep problems and some strategies for treating them in children with FXS, including assessments, behavioral techniques, and medications commonly used to treat sleep problems. Presented by Carol Delahunty, MD. Learn more about this webinar.

View all related webinars →

Additional Sleep Resources

Medications for Individuals with Fragile X Syndrome — Sleep Problems
Sleep problems are a frequent complication of Fragile X syndrome. They are most commonly caused by hyperarousal and the inability to settle down, either when trying to fall asleep in the evening or after awakening in the middle of the night.

Sleep Problems in FXS: Cross-Sectional Analysis of a Large Clinic-Based Cohort
Study findings show that sleep difficulties are prevalent in children with FXS and, although they tend to be mild, they are associated with behavioral problems and a negative impact on families.

Sleep Patient Information
Patient information and resources from the American Academy of Sleep Medicine.

View more daily living articles →

Implementing various strategies and interventions can support individuals with Fragile X syndrome in building stronger social connections and meaningful relationships. Limited social skills, social anxiety, and a perhaps narrow range of interests can contribute to these difficulties. While socializing may present a challenge, individuals with FXS can be and want to be great friends!

Many individuals are deeply loving, have an impressive ability to remember names, places, or routines, and often have a great sense of humor and love to laugh, joke, and share funny moments with others. There are many things we can do to help build skills and support individuals with FXS in being successful in social settings.

Dr. Jennifer Epstein wrote an important article that discusses various interventions that can increase the social network of individuals with FXS across the lifespan. Dr. Epstein’s tips for consideration include:

Building Early Social Skills for Making Friends

Building Early Social Skills for Making Friends

Parents and caregivers are in a unique position to assess their loved one with FXS’s social strengths, weaknesses, and interests and then provide “real life” intervention across the lifespan.

If there is a sibling or peer in the home, they may serve as a play partner who can help them rehearse social skills. Basic social skills such as greetings, taking turns, making requests, and simple negotiation can be rehearsed at home, thereby increasing the opportunities to use those skills with peers outside the home.

Parents may need a systematic approach to foster friendships for their children, but the earlier social connections are made a priority, the more success a child can have. Parents may also want to make an extra effort and reach out to other parents in the neighborhood or at school.

Parents may need to advocate for their child by explaining FXS and its core symptoms to other parents. By fostering these relationships, it may be easier and more comfortable for the children to get together as peers are more accepting of special needs during the younger years. When relationships are established early, they can pave the way for social support in the future.

It is important to keep in mind that concerning friendships, quality is more important than quantity. Like other children, those with FXS benefit from a range of friendships, from acquaintances to best buddies. In addition, when choosing supportive interventions, parents need to consider individual factors such as the degree of social anxiety, social interest, behavioral perseveration, and frequency of outburst behavior. It is best to schedule only one friend over at a time, to keep the sensory stimulation and social demands at a tolerable level.

Adults with FXS may have limited sources for developing lasting friendships. For most people, friendships are the outcome of mutual interests, proximity, shared experiences, and similar values or perspectives. This is no different for someone with a developmental disability, but often it seems that existing friendships are based more on proximity than on shared interests. Children often develop friendships based on familiarity, due to mutual placement in special education or inclusion programs.

Individual Psychotherapy or Behavioral Therapy

While the term “psychotherapy” is often reserved for insight-oriented mental health support and interpersonal change, meeting with a mental health therapist for support can be helpful for those with FXS. It can be a vehicle for reviewing social situations, making a plan, and implementing new social skills. Once skills are learned in a one-to-one setting, they can be applied elsewhere.

Experience with FXS is not a prerequisite for the therapist, but they would benefit from learning more about it. People with FXS may have a variety of mood, attention, impulse control, anxiety, and regulatory deficits that can lead to behavior problems and interfere with social adjustment. Often, these individuals need an ally to translate their underlying symptoms and help explain the triggers of behavioral and social difficulties. Involvement with a therapist can reduce anxiety because the individual feels more supported.

Visual Supports

Visual cues and strategies can help make therapy more concrete and are very important in reducing the load placed on working memory. It can be difficult for people with FXS to follow a complex conversation and track verbal information, which many traditional therapies emphasize. Drawing or diagramming a topic as it is discussed can be very helpful. Not only does it help focus visual attention, but it also provides a format for reviewing previous discussions. The therapist does not need to be an artist. Simple stick figures can go far in representing a verbal idea visually and making the conversation more concrete.

Writing out simple words to go along with key ideas organizes memory about the conversation. This technique is equally effective when parents use it to facilitate discussions with their children or when teachers use it to highlight an idea with students. It can be very helpful in diagramming a social situation or rehearsing appropriate ways to respond socially. Paper can be kept in a file to review previous sessions or ideas. A dry-erase board is nice because it is more fluid. If a mistake is made (clients often correct drawings), a dry-erase board can be edited more easily.

Social Scripting

The social anxiety that most individuals with FXS face interferes with their ability to engage in relationship-building activities. Despite the developmental gains made as people grow older, those with FXS often continue to feel overwhelmed by social interactions. They may have difficulty starting conversations, responding to direct questions, or handling common social situations. On the plus side, they often respond well to social scripting, in which an adult, such as a parent, teacher, or therapist, scripts and then rehearses specific interactions. This allows the person with FXS to memorize the desired social response, decreasing the likelihood of some other less desirable response.

For example, Frank may tell his parents he would like to invite Steve, a peer from school, to go bowling. Despite truly wanting this, Frank may feel too anxious to ask Steve. A social script can teach him exactly how to approach Steve. It may highlight “when” and “how” so that Frank is more prepared for the encounter. His script may even be written into a note on a phone or drawn onto an index card so Frank can review it before the interaction. He can carry it in a pocket to decrease his relative stress, though this may not be enough to support Frank in making the request.

Since no two people are alike, intervention strategies should be tried and refined as needed. If Frank is ultimately not able to approach Steve, it should not be considered a failure of the intervention. Rather, it was a success because it provided the information that the level of support was not high enough.

Subsequent strategies might include a familiar adult approaching Steve with Frank and providing proximal support. The adult may need to initiate the interaction and make the initial request, with Frank providing additional details as he feels comfortable. Frank might prefer to hand Steve a written invitation or, with help, send a text or email. All of these options allow Frank to enhance his social skills and, with success, decrease his social anxiety.

Facilitated Social Interactions

Some individuals with FXS need their interactions with peers to be directly facilitated. This may be particularly true for younger children if they are just starting to have play dates. It may also be true for older children or adults with limited social success or a history of aggressive behavior patterns. These individuals require supportive scaffolding.

It is important to pay attention to structure, organization, and supervision for a play date. Structure refers to the specifics of the situation (when, where, what) in concrete terms so that the child knows what to expect. Rather than letting the play unfold, it may be more successful to specify what the children will do. If 6-year-old Joey is having a friend over, what three activities would he like to do? These can be represented using pictures (such as a picture schedule using line drawings or photographs) so that Joey and his friend have a reference point as they progress.

Snack time may be helpful since snacks are almost always popular. Finally, there should be a scheduled timeframe. It is much better to keep the first few playdates too short, with the children wishing for more, rather than to have them too long, with the children pushed beyond their sensory and regulatory capabilities.

Adequate supervision and an active adult in the room who can guide the process successfully should also be present. Facilitating social interaction might mean simply sitting on the sidelines, but it could expand to facilitating turn-taking, sharing, or negotiating. For an adult with FXS, a facilitated social interaction might include a structured social event (baseball game, bowling) with a similar structure.

A visual schedule may be helpful. It will be useful to review and predict ahead of time what types of behaviors will be expected and what kind of events will occur. This may include expectations regarding snacks, restroom locations, desired social behavior, and whether a souvenir will be purchased. By keeping an eye on structure, facilitators can increase the likelihood of success and help build ongoing social support for the future.

While limited social skills, social anxiety, and a diminished range of interests often interfere with social adjustment despite a person’s desire for social connection, it is very possible to have positive social interactions. Individuals with FXS often need additional support to create and sustain social relationships within their peer group. Once a bond is formed, individuals with FXS often develop deep, lasting connections with family and friends.

Setting the Stage for Success: Effective Strategies to Promote and Support Social Skills

This recorded session, presented by Barbara Haas-Givler, discusses specific strategies for promoting and supporting essential social skills for those with Fragile X. Learn more about this webinar.

View all related webinars →

Additional Socialization Articles

“Wat Up?” and Other Steps to Socialization
“Hey” was one of my son Ian’s first words, and he quickly learned that whoever he said that to responded with something. Usually, it was with a smile and friendly tone of voice, and you know how quickly our children pick up on that positive feeling.

You Are Never Too Old to Wear a Pink Tutu . . . and Other Lessons Our Son Has Taught Our Family
Like many of you, I will never forget the day and time when I received the diagnosis for our son, Ian. Fragile X syndrome — never heard of it. These are the lessons my family has learned since that time.

How to Encourage Play — and Why Itʼs So Critical for Your Child
One of the familiar sights we encounter when visiting a child’s home is a play area chock-full of every toy known to man, yet they won’t play with any of them. This exasperation is likely familiar to many of you.

View all related articles →

Toileting

Toilet training is characteristically an area of stress for families with a child affected by Fragile X syndrome. While most of these children will become toilet-trained, this is typically delayed anywhere from one to multiple years later than the general population.

Toilet training can often be a challenging milestone for families of children with Fragile X syndrome, and you’re not alone if this feels like a stressful part of the journey. While most children with FXS become toilet trained, it often happens a bit later than it does for children without FXS — sometimes by a year or more. The good news is that recent research is helping us better understand who may need more time and support with this skill. With this information, we can tailor toilet training strategies to fit each individualʼs needs, including knowing when it might be helpful to start more structured or intensive training approaches.

Learning this highly functional skill has countless benefits that will pay off greatly for the individual with FXS and everyone around them. Once conquered, don’t forget to celebrate!

Toilet Training the Older Child (8+ Years Old)

Toilet training continues to be an important issue for families who have children with Fragile X syndrome (FXS), and we have several resources on the topic. It has been assumed that children of all ages would benefit from the same strategies, and if they were not initially successful with them, they may never progress in toilet training.

Experience has shown these assumptions to be inaccurate. There is hope for older children (from about age eight and up), though they require a different approach to toilet training. Drs. Marcia Braden and Jennifer Epstein tackle this topic by sharing strategies that have been the most successful for individuals with FXS. (Also see the webinar Toilet Training: Strategies for Children and Adults Age 10 and Older, below.)

Continue reading →

A Holistic Approach to Toilet Training

Toilet training can be a tough process, and for individuals with Fragile X syndrome (FXS), it often comes with added layers of complexity. It’s not just that toilet training tends to be delayed — it also may require specific strategies that consider the unique physical, developmental, and behavioral characteristics of children with FXS. While there’s no one-size-fits-all approach, what matters most is finding a path that works for your child’s individual needs.

This article by Dr. Karen Riley helps you do just that. Rather than focusing on rigid age ranges or generic checklists, we’ll explore signs of readiness and offer flexible, evidence-based strategies to support your child’s progress. The goal is to take some of the pressure off, reduce frustration, and help you feel more confident and informed as you navigate this important milestone.

Continue reading →

Please Donʼt Poo Poo This Article

This is one more story about children who do not want to go poo … in the toilet. It is probably not for the faint of heart, though it does make you realize that you will do anything for your children.

Continue reading →

Toilet Training Across the Lifespan

Jennifer Epstein provides an overview of methods that support readiness skills and helps caregivers understand the common hurdles affecting skill attainment specific to Fragile X syndrome.

Toilet Training Part 1: Strategies for Children Age 10 and Younger

Dr. Jennifer Epstein provides caregivers with an overview of toilet training strategies. You may have questions about where to begin if you have a young child and have not yet started the toileting process. If you have a child who is 10 or younger and has tried toileting but has been discouraged and given up, this workshop provides some beginning ideas to get back on the path. Learn more about this presentation.

Toilet Training Part 2: Strategies for Children and Adults Age 10 and Older

Dr. Jennifer Epstein provides caregivers with an overview of toilet training strategies. You may have questions about where to begin if you have a young child and have not yet started the toileting process. If you have a child who is 10 or younger and has tried toileting but has been discouraged and given up, this workshop provides some beginning ideas to get back on the path. Learn more about this presentation.

View all daily living webinars →

Additional Toileting Resources

Hiring a Potty Training Consultant: What Parents Need to Know
Learn what a potty training consultant does, how they help, and how to decide if hiring this kind of coach is the right choice for your child.

Related Treatment Recommendation

Toileting Issues in Fragile X Syndrome

Toilet training is a characteristic area of stress for families with a child affected by FXS. Training strategies regarding when intensive toilet training techniques must be applied are based on which patients are most at risk for late toilet training.

Special Events and Travel

Life is full of special events; events inside the home like birthdays and movie nights, events outside the home like holiday gatherings, play dates, or school and work functions, and events that require travel. Special events like these can require extra care and planning for individuals with FXS and their families. And you don’t have to do it alone; we’re here to help! Read more about strategies that have worked for others in the Fragile X community.

Special Events

For many families, holidays and seasonal celebrations can be a mix of joy and stress — but when caring for an individual with FXS, that balance can feel even more delicate. Whether it’s holidays, birthdays, summer festivities, or back-to-school season, changes in routine, unfamiliar environments, or increased social demands can all create extra challenges. Even events meant to be fun can quickly become overwhelming for both your loved one with FXS and you!

Preparing can help you truly enjoy these moments together. We’ve gathered tips, activity ideas, and thoughtful advice—many inspired by families like yours—to support a smoother, more positive experience. It’s all about finding what works best for your loved one with FXS and your family. And who knows? Along the way, you may even discover a new favorite tradition that brings more comfort and joy to your celebrations.

Flying

Flying with an individual who has FXS can feel overwhelming — but with preparation, support, and the right strategies, it can also be a manageable and even positive experience. Airports and airplanes are full of new sights, sounds, smells, and routines, which can be especially challenging for individuals who thrive on structure and predictability. Things like long lines, crowded spaces, unexpected delays, and loud noises can lead to anxiety, sensory overload, or behavioral outbursts. And for many families, the fear of public judgment or misunderstanding adds an extra layer of stress.

The tips we’re sharing come directly from parents who’ve navigated these journeys themselves. You’ll find various ideas and strategies because, as you know, every individual with FXS is different. What works for one family may not be helpful for another — and that’s okay. The key is to try different approaches, adapt them to your needs, and choose what feels right for your family. Whether it’s preparing your child with social stories, using noise-canceling headphones, or arranging pre-boarding to ease transitions, there are lots of tools to help support a smoother travel experience. The goal is to help you discover what works best for your loved one with FXS so you can feel more confident and supported throughout your travel experience.

Continue reading →

Additional Special Events and Travel Resources

Making the Skies Friendlier for Everyone
The Wings for All program from the Arc gives families and aviation professionals the confidence to take to the skies easily by providing an airport “rehearsal“ and a presentation on the aircraft features and in-flight safety protocols.

Airports and Airlines Around the World
Information and a list of airlines that have joined the Hidden Disabilities Sunflower network and have trained their entire workforce to support individuals with non-visible disabilities. Find out how each airline supports Hidden Disabilities Sunflower users.

Support Strategies

December 13, 2023

01 h 01 m

Baby's feet.

October 4, 2022

00 h 41 m

Young boy with a book, smiling.

November 20, 2015

01 h 23 m