Daily Living and Fragile X Syndrome | NFXF (original) (raw)

Daily Living and Fragile X Syndrome

Daily Living and Fragile X SyndromeDany Petraska2023-12-20T10:55:05-05:00

Fragile X Syndrome Daily Living Resources

For the topic of daily living, we’ve organized resources by sub-topics. Check the “on this page” dropdown for the full list. We are continuing to add information on Daily Living Strategies, which will be ideas on topics for which you have asked, and you will have an opportunity to provide your own ideas!

Eating
Sleep
Socialization & Relationships
Toileting
Caregivers
Support Strategies

Eating

Though not always a behavior problem, feeding time may be fraught with frustration due to sensory, motor, or medical reasons. Your child may overstuff their mouth, be aversive to specific textures, or have hypotonic oral muscles. Feeding can require patience and the gradual introduction of new foods. Speech and occupational therapy can help develop the appropriate use of their mouth and oral cavity, normalize sensory and motor functions, and build healthy routines around meals and food. Nutritionists or dieticians can also play a role to help with picky eating.

Treatment Recommendations

This document notes commonalities in behavior challenges in Fragile X syndrome, including intensity, frequency, and duration. These behaviors are influenced by other factors, such as their environment and medical conditions, and it is critical to address behavioral concerns, including eating and feeding, with an individualized approach.

From Our Blog

More Eating Resources

Sleep

Sleep problems are the most commonly reported complaints of parents, regardless of disability status. FXS is no exception. The most common issues we hear about are bedtime struggles, the time it takes to fall asleep, and waking up during the night. Parents have reported success with both behavioral methods and medications.

Treatment Recommendations

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.

Webinars

More Sleep Resources

Socialization & Relationships

Individuals with Fragile X syndrome often have difficulty establishing meaningful friendships, but various interventions and strategies can increase their social network.

From Our Blog

Jayne Dixon Weber2023-06-14T16:00:05-04:00

“Wat Up?” and Other Steps to Socialization

By Jayne Dixon Weber|2023-06-14T16:00:05-04:00Sep 28, 2022|

“Hey” was one of my son Ian’s first words, and what he quickly learned was that whomever he said that to responded — with something. Usually it was with a smile and friendly tone to their voice, and you know how quickly our children pick up on that positive feeling.

Webinars

Toileting

Toilet training is characteristically an area of stress for families with a child affected by Fragile X syndrome. While the majority will become toilet-trained, this is typically delayed anywhere from one to multiple years later than the general population. New data allows an understanding of which patients are most at-risk for very late toilet training and thus can guide training strategies in terms of when intensive toilet training techniques will need to be applied.

Treatment Recommendations

Consensus of the Fragile X Clinical & Research Consortium

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

Webinars

From Our Blog

Contributor2023-06-14T15:56:12-04:00

A Holistic Approach to Toilet Training

By Contributor|2023-06-14T15:56:12-04:00Mar 29, 2017|

The challenges of toilet training can be magnified for families of children with Fragile X syndrome. It's not simply that toilet training is delayed, it often requires specific behavioral techniques that address their physical and behavioral phenotypes.

NFXF2023-06-14T15:56:28-04:00

Toilet Training the Older Child

By NFXF|2023-06-14T15:56:28-04:00Aug 24, 2016|

Toilet training continues to be an important issue for families who have children with Fragile X syndrome. There is hope for older children, but they require a different approach to toilet training.

More Toileting Resources

Study: Toilet Training in Fragile X Syndrome
This important study will allow practitioners to inform families about the typical toilet training process and what to expect with toilet training efforts in a thoughtful, informed, and encouraging manner.

Support Strategies

Strategies for individuals with Fragile X syndrome — and their caregivers. Thoughts, tips, and methods for taking care of yourself first, plus day-to-day strategies for both of you, like schedules, social stories, and activities.

Webinars

From Our Blog

Tracy Murnan Stackhouse2023-06-14T16:13:54-04:00

Video Modeling

By Tracy Murnan Stackhouse|2023-06-14T16:13:54-04:00Nov 9, 2016|

Therapy is a fun, creative process – one of the reasons that we have been at this for so long! One of the challenges of being a therapist is staying on top of the ever-emerging intervention techniques that come into our practice and making them work for individuals with FXS.

NFXF2023-06-14T16:14:08-04:00

Teaching Your Child to Ask for Something

By NFXF|2023-06-14T16:14:08-04:00Jul 30, 2015|

One of the most challenging things for my son, Ian, to do is ask another person (not mom or dad) for something — like a favor or request — in an appropriate way. This [...]

More Support Strategies Resources

Caregivers

Caregivers play a critical role in managing the needs of individuals with Fragile X syndrome, who in turn rely on caregivers for a wide range of support, which may include meals, household chores, transportation, medications, bathing, dressing, feeding, physical, emotional and social care, and managing finances. The role can be exhausting but also rewarding. Here we try to add some helpful information and reading for all our caregivers.

Developmental disabilities in one sibling can present unique challenges for unaffected siblings. Just as with other disabilities, siblings of children with FXS may feel torn between two sets of feelings.

Browse our other available Info Series flyers designed to be easily printable on your home or office printer.

Webinars

From Our Blog

NFXF2023-06-14T15:51:34-04:00

Talking with Your “Typical” Children About a Sibling’s Fragile X Syndrome Diagnosis

By NFXF|2023-06-14T15:51:34-04:00Mar 30, 2016|

When parents first learn about Fragile X, their primary focus is on the meaning of the diagnosis for their child with the syndrome. Once the dust settles though, they begin to think about the genetic implications for other family members, and in particular, for typically developing siblings who may or may not carry a Fragile X mutation.

More Caregiver Resources

The ABLE Employment Flexibility Act
One key advantage of ABLE accounts is that they allow individuals to do some work — a key part of their mental health — while still being eligible for means-tested programs like Medicaid.

Talking with Your Daughter About Her Fragile X Syndrome Diagnosis
Many families struggle with deciding when the “right” time is and what to say. Here are some strategies to help in having a conversation with your daughter about her Fragile X syndrome diagnosis.

Estate Planning: Special Needs Planning for Individuals and Caregivers — WEBINAR
Learn how to leave money and other assets for the benefit of a child with special needs without causing the child to lose important public benefits, including understanding the difference between a payback special needs trust and a third-party discretionary trust.

Guardianship — WEBINAR
UPDATE LINK Alternatives to guardianship, such as financial and health care powers of attorney that are less restrictive, are also covered. The different types of guardianship are explained, along with the process of establishing one in your state. Guardian responsibilities and limitations are also addressed.