With Tracy Stackhouse, MA, OTR/L, Lauren Moskowitz, PhD, Jennifer Epstein, PsyD, and Missy Zolecki
The multi-disciplinary panel discussed challenging behaviors, including aggression in adolescents and adults, focusing on identifying these behaviors and safely intervening when they occur. The panelists discussed various interventions and strategies, emphasizing the importance of individualizing the approach to best meet each person’s unique needs.
This hour-long webinar on challenging behaviors included insights from different perspectives and explored the role that parents and caregivers could play in preventing these behaviors, reducing their intensity, or, unintentionally, contributing to them.
NFXF Webinar Series: Navigating Challenging Behaviors
Additional resources and controls for this video are accessible just below the video: play/pause, volume, subtitles, view transcript, watch as picture-in-picture, or in full screen mode.
Navigating Challenging Behaviors Discussion
The webinar was a facilitated one-hour Q&A session covering a wide range of topics answering questions submitted by the community. The panelists shared recommendations and information during the discussion, each from their professional perspectives.
Over the hour-long discussion, some important themes emerged, including:
- Safety First: Ensuring safety for all involved should always take precedence over any intervention.
- Parents as Key Team Members: Recognizing that parents are key members of any team working on a plan to address challenging behaviors is crucial.
- Comprehensive Plan: While medication can be an important component of a treatment plan, it should be viewed as just one part of a holistic approach, with the individual’s doctor collaborating as needed.
- Understanding the “Why” Behind Behavior: The panel emphasized the importance of understanding the “why” or “trigger” of a behavior, which is as vital as understanding the “what.” Identifying the “antecedent” or what happens before a behavior can be critical in developing an intervention plan, though this aspect can often be challenging to fully understand or identify.
- Parental/Caregiver Self-Awareness: Panelists stressed the importance of parents and caregivers being mindful of their own role in challenging behaviors. They shared techniques for recognizing one’s role and managing emotions, including self-calming and de-escalation methods.
- Tracking Behavioral Progress: The panel highlighted the value of “collecting data” on behaviors as a simple yet effective way to track progress and assess if behaviors are improving over time.
The panelists emphasized that “we’re all human,” mistakes will be made, and we learn from each encounter and should apply what we learned should there be another incident.
Closing remarks by the panelists included encouragement to: “be kind to yourself;” behavior can, and most likely will, improve over time; that the NFXF has numerous online resources that can be of great help; there is a vast community of families and professionals in the Fragile X world ready and willing to help.
We are grateful to the professionals who shared their knowledge and expertise during the webinar. We strongly encourage you to take the time to watch the recording, where you can dive into the in-depth discussion of the points mentioned above and much more!
Additional Resources
Below are the links to additional resources on our website that were referenced during the webinar. We encourage sharing these with your healthcare providers.
- https://fragilex.org/family-resources/behavior-fxs/
- https://fragilex.org/living-with-fragile-x/addressing-aggressive-behavior-fxs/
- https://fragilex.org/family-resources/medications-fxs/
- https://fragilex.org/professional-resources/treatment-recommendations/medications-consensus-fxs/
- https://fragilex.org/family-resources/puberty-sexuality/
- https://fragilex.org/living-with-fragile-x/clinic-finder/
The following are external resources mentioned by the panelists. These resources are provided as options for your consideration. They do not constitute a recommendation or endorsement.
- https://publications.ici.umn.edu/dhs/positive-approaches-to-challenging-behaviors/directly-observing-behavior-abc-chart
- https://publications.ici.umn.edu/dhs/positive-approaches-to-challenging-behaviors/direct-observation-scatter-plot
- https://publications.ici.umn.edu/dhs/positive-approaches-to-challenging-behaviors/planning-for-implementation
- https://www.bcm.edu/research/faculty-labs/luna-learning-to-understand-and-navigate-anxiety
about
Robby Miller
Robby has spent over 50 years helping children with special needs, their families, and the professionals who work with them. Robby is particularly interested in how families learn about, access, and receive meaningful services from competent professionals, organizations, and institutions. This interest led to his co-founding the Fragile X Clinical & Research Consortium, also known as FXCRC. In his spare time, you’ll find Robby singing and playing rhythm guitar in a rock band with his pals.