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Welcome
Individuals with Duchenne
Overview
Duchenne Muscular Dystrophy
Overview
Emotions & Behaviors
Physical Challenges
Social Challenges
Recent Research
Role of Caregiver
The Risk of Sexual Abuse
Consenting to Caregiving
Caregiver Collaboration – draft
Challenging Behaviors
Overview
4 Contributing Factors
“I Wish They Understood…”
Mental Health Diagnoses
Situational Meltdowns
Spectrum of Behaviors
Ways to Support
Overview
Customize School
Encourage Independence
Highlight Accomplishments
Prioritize Mental Health
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Recognize Overwhelm
Teach Life Skills
Common Experiences
Overview
Children
Adolescents
Adults
Connection & Belonging
Overview
Accepting Help
Intimacy & Relationships
Othered
Reciprocating
Friendship Skills & Duchenne
Self-Perception
Social Exclusion
Social Needs
Fundamental Life Skills
Overview
Building Medical Relationships
Cognitive Independence
Identity Formation
Physical Independence
Self-Advocacy
Social-Emotional Independence
Independence
Overview
Capable
Identity Formation
Interdependence
Life Skills
Self-Determination
Social-Emotional Independence
Ways to Support
Intimacy
Overview
Desire
Relationships
Sexual Development
Sexual Education
Transgender
Vulnerable
Mental Health
Overview
Common Diagnoses
Existential Distress
Physical Limitations
Self-Perception
Suicidal Ideation
When You Stop Walking…
Overview
Consult a Psychiatrist
Purpose
Overview
The Future?
Identity Formation
Role Models with Duchenne
Self-Determination
School
Overview
Cumulative Effect
Expected to Learn
Mental Health
Neurocognitive Demands
“Othered”
Physical Demands
Social Demands
Ways to Support
Overview
Acknowledge Disease Progression
Create a Connection
Customize the School Day
Establish Priorities
Notify Parents
Provide a One-to-One Aide
Select Teachers Thoughtfully
Family
Overview
Siblings
Overview
Maturity, Appreciation & Humor
Need for Information
One's Own Identity
Over-Identification & Isolation
Sole Survivor
Strengths
Tolerance & Advocacy
Vocation, Inspiration & Pride
Ways to Support
Overview
Ask Questions
Include the Siblings
Provide Opportunities for Play
Talk about Duchenne
Helping Kids Cope
Parents
Overview
Marriage & Divorce
Mental Health
Parents and Duchenne
School Advocacy
A Village
Ways to Support
X-Linked
Overview
The Genetics
More Than Muscles
The Spectrum
Women with Duchenne
Family Unit
Overview
Change, Stress, and Coping
Relationships
Grief
Growth
Stress
Ways to Support
Bereaved
Overview
Before the Last Breath
After the Last Breath
That Fragile & Tender Space
Mental Health
Ways to Support
Overview
Be Involved
Build Communication
A Deep, Collective Sorrow
Friends
Overview
What Is Duchenne?
Overview
For Educators
For Kids
For Medical Professionals
For Physical Therapists
Social Tips
Overview
Adolescents & Community
Courage to Connect
A Duchenne-Friendly Visit
Equity, Equality & Duchenne
Eye Gaze Communication
Flying with DMD
Human Touch & Disability
The Need for Human Touch
Othered
Permission
Social Exclusion
Socializing & Lung Health
The Spectrum of Grief
Wasting Time
Wheelchairs & Social Life
Who Was There
*Treated Differently
disabilities & prejudice
Truba – effects of messages that society sends
Connected to Society
Rights for the Disabled in America
**Wheelchairs & Assumptions
Media & Stereotypes
100+ Ways to Help
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