Independent Living Skills for Individuals with X and Y ... · Independent Living Skills for...
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Independent Living Skills for Individuals with X and Y chromosome variations
Maria Vogiatzi, M.D.Pediatric Endocrinology
Children’s Hospital of Philadelphia
Disclosures: None
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Independent LivingIs my child ready?
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Independent Living Skills
• Staying Healthy• Day – to - Day Living things• Keeping it Safe• Social Skills• Social Connections• Day- to - Day Financial management
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How to Support Decision Making and Learning: Path to Independence
Realistic GoalsChild’s Interests and AbilitiesEnvironment and Resources
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Staying Healthy: Medications
Things to know about meds:• Why you need to take them?• What happens if you missed doses? • Adverse effects• Who prescribes them?
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Staying Healthy: Medications
How to take them independently
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Staying Healthy: Medications
How to take them independently
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Staying Healthy: Medications
How to manage refills
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Staying Healthy
Keeping up with doctor’s appointments
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Day- to - Day Living things
CookingPersonal Hygiene & Laundry Driving & Transportation
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Keeping it Safe
Food safetyPersonal safety
cell phone GPS locator, landlines, when to call 911 Internet Safety
NetnannyHow to interact with police
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Social Skills Finding and keeping a job• Identifying personal interests & abilities• Interviewing• Asking for accommodations• Keeping a schedule• Staying on task
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Social Connections
Bulling & Self-AdvocacyDisclosureSexuality & dating
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Disclosure- Telling Others• School/ Work
Advocacy for Resources & AccommodationMisconception as lazy
• Family & FriendsRight to privacyMisinformation by internet & social media
• Dates
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Disclosure What we know from research on other genetic conditionsChallenges: Whether, when, what and how to tellConcerns: fear of rejection
too soon or too latehow much detail to disclose
What may influence decision to disclose:individual and family attitudes and beliefsgetting to know other families may help
Strategies: open vs. selective
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Disclosure-How to tell• In person- no text or emails • Make a plan according to circumstances• Be truthful & keep a positive attitude• Framed in the context of the individual (not what is
written in textbooks or internet)• Use simple terms and direct language
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Klinefelter and other XY Variations Program
Thank you!