Eileen Rall, Au.D., CCC-A Louise A. Montoya, MA, LPC, CSC The Center for Childhood Communication

1. Counseling Guidelines: Supporting Children with Hearing Loss Eileen Rall, Au.D., CCC-A Louise A. Montoya, MA, LPC, CSC The Center for Childhood Communication

2. Session Objectives • Understand the impact of • the diagnosis of hearing loss on a family system • hearing loss on psycho-social development of a child • Become familiar with a pediatric counseling guideline and understand how to integrate it into your practice

3. Teacher, Speech Language Pathologist Audiologist, Physician ? Child Developmental Model Cognitive Social-Emotional Physical

4. Pediatric Counseling Guidelines Birth through transition to school

5. Pediatric Counseling Guidelines • Impact of diagnosis • Psycho-Social development • Erik Erikson’s model of development • Development of self-concept (15 mos+) • Development of social skills

6. Pediatric Counseling Guidelines • Diagnosis • Birth to Three years • Three to Six years • Six to Eleven years • Eleven through Adolescence

7. Erikson’s Stages of Psycho-Social Development • Trust vs. Mistrust (birth – 18 months) • Autonomy vs. Shame and Doubt (18 mos – 2 years) • Initiative vs. Guilt (3 – 6 years)

8. Psycho-Social DevelopmentSelf-Concept An individual’s understanding of who they are • No self • Self-awareness • Factual self-concept • Egocentric view of self-concept • Self-confidence and self-esteem emerging • Comparative • Peer-pressure • Individuation

9. Psycho-Social DevelopmentSocial Skills • Healthy Attachment • Basic • Intermediate • Advanced

10. Developmental Index of Audition and Listening (DIAL) • Functional auditory • milestones Palmer and Mormer (1999)

11. Impact of Diagnosis • Sharing information • Recognizing emotional reactions • Promoting healthy attachment • Positively impacting family systems

12. Medical Model Family Centered Model Sharing Information Diagnose Family's Needs Child's Needs and Treat The child

13. What are the benefits of Family-Centered Care?(not specific to hearing impairment) • Improved teaching skills of parent • Better behavior from child as a result of improved parental teaching skills • Decreased parental stress • Improved satisfaction of services

14. Recognizing Emotional ReactionsFeelings Involved with Grief • Shock/Denial/ Numbness • Anger/Fear/Panic • Sadness/Hopeless • Guilt/Bargaining • Healthyacceptance/adaptation

15. Grief Core pain can’t be taken away. • Feelings must be acknowledged, expressed in a safe, caring environment. • Some emotions have an important purpose in helping parents adjust to the diagnosis Potential Pitfall: Because parents may have strong feelings of inadequacy • Many parents happy to turn over their child to “the experts” • Professionals eager to rescue Luterman (1999)

16. Feelings Involved with Grief • Shock/Denial/Numbness - protects parents from deep pain and allows parents to build up energy for the work ahead of them • Anger - Parents feel cheated. Anger hides their fear. Many professionals are very afraid of the anger and respond defensively. Need to help parents capture and direct their energy effectively.

17. Feelings Involved with Grief • Sadness/Hopelessness –expressing grief – moving forward • Guilt: • Fathers for not protecting the family • Mothers because she secretly believes she’s at fault for the hearing loss • Comes between the marriage, family becomes unbalanced (Mother+child, father+work) • Danger is overprotection of child. Conveys helplessness to the child.

18. The Hearing Healthcare Professional a.k.a. “The Healer” • A vicious cycle begins when parental helplessness and powerlessness intersects with professionals’ need to help, save, assume the powerful, “expert” role with families • Results in parents who are: Over-controlling Lack self-confidence Self-serving Don’t feel competence Passive • Children internalize this powerlessness, helplessness, and head down a path of life long poor self-esteem

19. Parents with Unresolved Grief Can Be: • Emotionally overwhelmed • Stuck in anger • Frequently suppressing their emotions • Depressed or passive • Unrealistic or stuck in denial • Disorganized, confused • Actively searching for the cause of the hearing loss Yoshinaga-Itano (2001)

20. What can you do? • Provide immediate, appropriate support • Have appropriate counseling skills • Have expert knowledge and experience with living with hearing loss • Actively listening • No judging the family • Build parental self-esteem, self-confidence Yoshinaga-Itano (2001)

21. What can you do? Help families understand • The etiology, emphasizing that cause was not parents’ intention • Their child is not fragile • Their child can do anything, but, may have to do some things differently • That taking good care of themselves and their marriage = taking good care of their child Luterman (1999)

22. What can you do? Inform parents that: • Children with congenital and pre-lingual onset of hearing loss do not experience grief until sometime between 7 – 9 years of age • Parents need to keep their grief away from child. Child will misunderstand and misattribute parents’ grief • Child has best chance of resolving their initial grief if parents have positively resolved their initial grief

23. Healthy Acceptance/Adaptation • Acknowledge their preference that their child not be deaf/hard of hearing • Accept the permanence of the hearing loss • Understand and have entire family take consistent action to make necessary changes create accessible/effective communication environment for deaf/hard of hearing child

24. Healthy AttachmentBetween Parents and Children • Deep enduring connections established between child and caregiver • Occurs between birth and age 3 • Learned ability • Result ofongoing reciprocal interactions characterized by protection, need fulfillment, limits, love and trust Levy (2000)

25. Healthy AttachmentCan Lead to Development of: • Basic trust and reciprocity • Self-regulation of affect and behavior • Healthy identity = healthy self-worth + autonomy • Morality based upon empathy, compassion and conscience • Resourcefulness and resilience for response to future stress • Stimulating experiences required for healthy brain development Levy, (2000)

26. Potential Consequences of Insecure Attachment: Self-regulation deficits: • Impulse control • Self-soothing • Initiative • Perseverance • Inhibition • Patience Levy (2000)

27. Potential Consequences of Insecure Attachment: Development of problem behaviors: • Impulsiveness • Hyperactivity • Inattention • Seeking stimulation • Poor self-image • No friends • Oppositional and defiant • Disruptive • Manipulative • Blames others (internalized helplessness) Levy (2000)

28. What can you do? • Inform parents that: • Teach parents about the importance of healthy attachment • Support them through the feelings associated with grief • Help them understand the impact hearing impairment has on communication – avoid misunderstanding communication difficulties

29. Healthy Family System • Feels empowered • High self-esteem (especially for the mother) • Feeling that burdens are shared • Achieved healthy acceptance of the diagnosis Luterman (2001)

30. Healthy Family System Community Extended Family Family Marriage Child Parent Parent Child Child

31. Unhealthy Family System Community Extended Family Family Marriage Child Parent Parent Grandma Child Child

32. What can you do? • Inform parents • Be a sounding board • Listen • Coach • Acknowledge • Brainstorm • Support • Model strategies • Refer to professionals when needed

33. ChildDevelopmental Model Teacher Audiologist, Physician Insert your picture here Cognitive YOU!! Social-Emotional Physical

34. Psycho-SocialDevelopmentErikson’s Stages Trust versus Mistrust (birth – 18 months) Babies learn to: • Trust their world if they are kept well-fed, warm, dry, and receive regular human touch • Mistrust their world if they are left hungry, cold, wet, and unattended

35. Psycho-SocialDevelopmentErikson’s Stages Autonomy versus Shame and Doubt (18 months – 2 years) Toddlers want to rule their own actions and bodies With success develop Autonomy With failure develop Shame and Doubt in their own abilities

36. Self-ConceptBirth – 14 months • No sense of self • Child views themselves as extension of their parent/caregiver • Classic test: red nose in the mirror; All children 12 months and younger do not know they are seeing themselves in a mirror

37. Self-Concept15 months – 2 years • Self awareness emerges • Recognize self in a mirror • Classic test: red nose in the mirror; Most children 15 – 24 months will notice the red on their nose and be curious or embarrassed

38. Self-Concept2 - 3 years • Self concept emerges • Child identifies themselves as: • A “girl” or a “boy” • A “baby” or “big boy/girl” • A “brother” or “sister” or only child • By religious affiliation • By ability

39. What can you do? • Evaluate and support access to alerting devices • Include the child in conversations about hearing loss - positive • Support families in developing relationships with other families with children with hearing loss and with D/HoH adults and older children

40. Psycho-SocialDevelopmentErikson’s Stages Initiative versus Guilt (3 – 6 years) Initiative: • Increased awareness of self and world outside of home • Eagerly attempts new tasks and play activities • Successful attempts at new tasks help children learn and master many things, which becomes self-reinforcing (proud of themselves) and self-controlling to gain the approval of adults

41. Psycho-SocialDevelopmentErikson’s Stages Initiative versus Guilt (3 – 6 years) Guilt: • When attempts result in failure or criticism, the child feels: Guilty Incompetent Helpless

42. Self-Concept3 - 6 years • Ego-centric thinking • “I am the world and the world is just like me!” • Repetition/Practice Mastery • Mastery Competence • Competence Self-confidence • Self-confidence Self-esteem

43. Professional as Coach Parents teach their child. Professionals support and coach parents as they teach their child. Professional Parent Child

44. Development of Social Skills/Interaction Provide information to parents on: • Lack of incidental learning due to hearing loss • Often deaf/hard of hearing children need specific training on basic and more advanced social skills • Use of social skills books • Discriminating between “Can’t Do” or “Won’t Do” behavior problems Gresham (1995)

45. Frequent Teaching of Social Skills • For “Can’t do” behavior problems:Use Modeling, coaching, practice • For “Won’t do” behavior problems:Use behavior charts, positive reinforcement, effective praise, and noticing (and describing) good behavior Gresham (1995)

46. Examples of Basic Social Skills • Eye contact • Smiling • Listening (for friendship) • Introducing yourself • Meeting new people • Joining a group • Giving compliments

47. What can you do? • Promote effective communication strategies - for all (including YOU!) • Evaluate and support access to age-appropriate activities • Talk to families about social skill development • Foster development of initiative

48. Thank you! Eileen Rall, Au.D., CCC-A (215) 590-7612 or rall@email.chop.edu Center for Childhood Communication at The Children’s Hospital of Philadelphia 34th and Civic Boulevard, Room 112 Philadelphia, PA 19104