Advocacy Day Social Story | NFXF (original) (raw)
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- Fragile X 101
* Fragile X 101
* Prevalence
* Signs and Symptoms
* Genetics and Inheritance
* Testing and Diagnosis - Fragile X Syndrome
* Fragile X Syndrome
* Newly Diagnosed
* Fragile X & Autism - Associated Conditions
* Premutation
* FXPOI
* FXTAS
* New Developments - Xtraordinary Individuals
- 31 Shareable Fragile X Facts
- Fragile X Info SeriesFact sheets by topic
- Fragile X MasterClass™️
- Knowledge CenterFrequently asked questions.
- Fragile X 101
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- Resources for Families
- FXS Strategies by Topic
* Adulthood
* Autism
* Behavior
* COVID-19
* Daily Living
* Females
* Medications
* Physical & Medical Concerns
* Puberty & Sexuality
* School & Education - FXS Resources by Age
- Premutation Topics
* The Fragile X Premutation
* FXTAS Resources
* FXPOI Resources
* Reproductive Resources - Newly Diagnosed
- ResearchLearn and participate
* Research 101What is research?
* STX209 Reconsent ProjectEnrollment is open
* International Fragile X Premutation Registry — For ParticipantsEnroll now
* Participate in ResearchMyFXResearch Portal
* Original Research Articles
* FORWARD-MARCHDatabase and registry
* Research ResultsNew and archives - Find a Fragile X Clinic
* U.S. Fragile X Syndrome Clinics
* FXTAS-Specific Clinics
* International Clinics & Organizations - Find a Contact Near You
- Knowledge CenterOur Fragile X library
- Webinars & Videos
- Printable Resources
- Treatment Recommendations
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- Resources for Professionals
- NFXF MasterClass™️ for Professionals
- Research Readiness ProgramResearch facilitation for researchers
- NFXF Data Repository
- International Fragile X Premutation Registry — Research Requests
- FORWARD-MARCHRegistry & Database
- NFXF-Led PFDD Meeting for Fragile X SyndromePatient-focused drug development
- Marketing Your Research Opportunities
- Treatment Recommendations
- Fragile X Clinics
* U.S. FXS Clinics
* FXTAS-Specific Clinics
* International Clinics & Organizations - NFXF RESEARCH AWARDS
* Randi J. Hagerman Summer Scholar Research Awards
* Junior Investigator Awards
Get
Involved-
- Fragile X 101
* Fragile X 101
* Prevalence
* Signs & Symptoms
* Genetics and Inheritance
* Testing and Diagnosis - Fragile X Syndrome
* Fragile X Syndrome
* Fragile X & Autism - Associated Conditions
* Premutation
* FXPOI
* FXTAS
* New Developments - Xtraordinary Individuals
- 31 Shareable Fragile X Facts
- Fragile X Info Series
- FRAGILE X MASTERCLASS
- Knowledge Center
- Fragile X 101
-
- Resources for Families
- FXS Strategies by Topic
* Adulthood
* Autism
* Behavior
* Daily Living
* Females
* Medications
* Physical & Medical Concerns
* Fragile X and Puberty & Sexuality
* School & Education - FXS Resources by Age
- Premutation Topics
* The Fragile X Premutation
* FXTAS Resources
* FXPOI Resources
* Reproductive Resources - Newly Diagnosed
- Research
* Research 101: What is Research?
* STX209 Reconsent Project
* International Fragile X Premutation Registry — For Participants
* Participate in Research
* Original Research Articles
* FORWARD-MARCH
* Research Results Roundup - Find a Clinic Near You
- Find a Contact Near Your
- Knowledge Center
- Webinars & Videos
- Printable Resources
- Treatment Recommendations
-
- Resources for Professionals
- NFXF MasterClass™️ for Professionals
- Research Readiness Program
- NFXF Data Repository
- International Fragile X Premutation Registry — Research Requests
- FORWARD-MARCH Registry & Database
- NFXF-Led Patient-Focused Drug Development Meeting
- Marketing Your Research Opportunities
- Treatment Recommendations
- Find a Clinic Near You
- NFXF Research Awards
* Randi J. Hagerman Summer Scholars
* Junior Investigator Awards
Advocacy Day Social Story
Our own Jayne Dixon Weber pulled together a social story to use to help you and your self-advocate prepare for the NFXF Advocacy Day on February 24, 2021.
What are Social Stories?
First used for children with autism, social stories are mainly used to explain a social situation to a child, teen, or adult experiencing social challenges. They usually have trouble with the concept of social cues, so an example may be a story about visiting a neighbor and might cover things like ringing the doorbell (once, not repeatedly until someone answers) or when to enter the home (only after being invited).
Social stories are usually written specifically for one person and personalized based on their challenges. They’re not intended to change behavior, instead the goal is to clarify social situations or explain something new while hopefully also encouraging self-management through self-awareness and self-calming. They’re used most often to help children deal with change, new routines, transitions, unique situations (like COVID-19), and understanding other people’s point of view.
Pictures are optional, but having the child help with the pictures can be a super fun activity, and help make the situation you’re trying to address more fun for everyone. You can view our COVID-19 social story here.
The NFXF Advocacy Day Social Story
The Advocacy Day Social Story covers:
- Summary of Activities
- Siblings and Self-Advocates Training
- New Attendee Training
- The NFXF Advocacy MasterClass
- Live virtual training on February 19
- The speakers: Linda Sorensen, Gregg Harper, Dan Whiting, and Christopher Kush
- Breakout sessions during the training
- Testing the virtual meeting app
- Preparing for your meetings
- Questions
We have provided the social story in both PowerPoint and PDF formats. Feel free to edit the PowerPoint to suit your individual needs. You can download either format below.
author
Dan Whiting
Dan served as the NFXF Director of Community Impact from 2017 to 2022. He has over 23 years of experience in public policy and communications, including 11 years as a staff member for a U.S. Senator, in the Bush Administration as Chief of Staff at an agency, and as a senior strategist for communication initiatives across the DOD. During his time at the NFXF, he was passionate about helping individuals with intellectual and developmental disabilities live better lives.