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Sexuality Issues for Children and Adolescents with CHARGE

Where do we begin? And WHY?

“Not teaching a child about sexuality and how to express natural urges in a safe and appropriate manner

denies a big part of what is essentially human.” (Moss & Blaha, 2001).

Embarrassing moment or teaching moment

  • Children with DB and DD do NOT learn incidentally about sexuality issues.

Importance?

  • Multiple studies indicate that children who are Deaf know less about sexuality issues than hearing peers (Getch et al., 2011)
  • 2.2 times higher for sexual abuse
  • Often repeated and will go unreported (Stinson, Christian, & Dotson, 2002)

References: National Center for Abuse and Neglect

Sexual Abuse Research

Males

  • About 13.9% vs. 3.7% reported lifetime sexual violence
  • 32% victims of sexual assault

Females

  • 26.6% vs. 12.4% experienced lifetime sexual violence
  • Abuse estimated to range from 33% to 83%
  • 83% victims of sexual assault (less than half seek treatment or legal support)

References: American Journal of Preventive Medicine; Journal of Interpersonal Violence 2000, 15 (1); Stinson, Christian, & Dotson, 2002; Murphy & Elis, 2006

Goals

  • Begin teaching EARLY!
  • 6 month
  • 1 year
  • 5 year
  • Is the location (environment) appropriate?

Naming Body Parts

  • Use daily teaching when appropriate
  • Begin Early
  • Be Specific
  • Recommendations:
    • Games: “Is it a boy or a girl?”
    • Books, magazine clippings

Personal Boundaries

  • Establish a pattern of behavior.
    • More difficult to change highly established behaviors
    • Identify examples of safe and not safe hands
  • Model Modesty
    • REQUIRE modesty from teachers, physicians, etc.
    • Opportunities for practice
    • Teach for the environment

Establishing Boundaries

  • State specific people who can see the child without clothing
    • Who can assist with baths?
    • Examples of private and not‐private
    • Prep for physical examinations

Safe Hands

  • Use a consistent vocabulary
  • Forewarn your educators
  • Perseverative touch; redirect when able and address with a formal behavior plan

Hugging Social Story

Kissing Social Story

Personal Boundaries

  • How do introduce yourself to others
  • Name
  • Place out hand
    • “Count down” handshake

Hygiene and Personal Care

“A critical component of social and sexual maturity is attaining independence in basic self‐care tasks.” ‐AAP

  • Intervention Options: direct instruction, formalized cues, and reinforcement system
  • Clothing: Acceptable to peers and socially appropriate?
  • Add to your child’s yearly goals at school

Showering/Bathing

  • Assistance‐ Did you ask for permission?
  • Use of soap
  • Forgotten parts
    • Neck
    • Back
    • Feet
  • Caring for Stoma site and other medical necessities

Hygiene Interventions

“First Impressions”

  • Male and Female Versions
  • Hygiene
    • Importance
    • Shower, Shampoo, Soap
    • “5‐minute shower”
    •  Toilet Hygiene
    • Self‐exams (testicular and breast)

Menstruation

  • Sanitary Pad Compliance
    • Practice, Practice, Practice!
    • Visual scripts (placement and changing)
    • Reinforcement
  • Hygiene
  • Choices
    • Sanitary pad type
  • Add to IEP
  • Prepping for School
  • Medications
  • Keep record of periods

Examinations

• The American Academy of Pediatrics supports having a trusted caregiver present for examinations if the individual provides consent to do so (Murphy & Ellis, 2006)

Birth Control

  • Discuss questions and concerns with your child’s physician
  • Caution: antiepileptic medications decrease the effectiveness of oral and implanted contraceptives (Murphy & Elis, 2006).
  • Injectable contraceptive can effectively minimize or eliminate menstrual flow
    • Prolonged use linked to bone density loss in healthy adolescent females, which may not reverse completely after discontinuation of the medication (Murphy & Elis, 2006)

Masturbation

  • Prerequisite Skill #1:
    • Does your child understand the concept of “wait”?
      • “Later when we get home”
  • Prerequisite Skill #2:
    • Teach public versus private

  • LOCATION, LOCATION, LOCATION

    • Redirects; Use of a timer

    • Social Story; Visual Script

    • Reinforcement Systems!

    • Be cautious of items used for humping

    • Gentle touch

  • Video Modeling:

    • Males: “Hand Made Love: A guide…”

    • Females: “Finger Tips: A guide…”

      (Diverse City Press: Diverse‐city.com)

Sex Education

  • Education and intervention for sexuality allows the individual to knowledgeable to make informed decisions to promote sexual identity and sexual safety (Getch et al, 2001)
  • Consult with your IEP team early

Final Notes

  • Begin education early
  • Physicians and educators must know that sexuality education is primary part of your child’s goals
    • National Consortium on DB: “Intro to Sexuality Edu.”
  • Instructional strategies may require the use of concrete materials and tactual exploration.