THE PSYCHOLOGICAL IMPACT OF VISION LOSS

1. THE PSYCHOLOGICAL IMPACT OF VISION LOSS MARGO SIEGEL, MSW

2. THANK YOU • BACKGROUND • SUMMARY OF TOPICS INTRODUCTION

3. ALL PRESENTATIONS ARE SUBJECT TO BIAS AND/OR SELECTIVE PROCESS…THIS PRESENTATION INCLUDED. • NO MATTER HOW MUCH I THINK I KNOW, SOMEONE ALWAYS KNOWS MORE! • THIS PRESENTATION IS DESIGNED TO APPEAL TO VARIOUS LEVELS OF EXPERIENCE AND EXPERTISE. • THIS PRESENTATION WAS DERIVED FROM YEARS OF WORK EXPERIENCE, RESEARCH FINDINGS AND ACADEMIC COURSEWORK AND PERSONAL OBSERVATIONS. (RICHARD HARRIS, LICSW; NASW: RHODE ISLAND) PRESENTATION ASSUMPTIONS, BIASES, AND LIMITS

4. PARTIALLY-SIGHTED (STABLE) • PARTIALLY-SIGHTED (UNSTABLE) • CONGENITALLY BLIND TYPES OF VISION LOSS

5. FROM YOUR EXPERIENCES WORKING WITH STUDENTS, WHICH TYPE OF VISION LOSS WOULD YOU BELIEVE TO BE MOST CHALLENGING PSYCHOLOGICALLY? EXAMPLES

6. “A STRONG DISCREPANCY EMERGED BETWEEN THOSE PATIENTS WITH DIFFERENT CLINICAL PROGNOSES, THAT IS, BETWEEN THOSE BLIND AND THOSE AFFECTED BY PARTIAL SIGHT LOSS. THE PSYCHOPATHOLOGY PICTURE WAS WORSE FOR THOSE WITH PARTIAL SIGHT LOSS WHO DISPLAYED A MORE MARKED PRESENCE OF DEPRESSED MOOD, ANGER, AND HOSTILITY. CORRECTION OF GRADUALLY DETERIORATING SIGHT SEEMED TO POSE GREATER PROBLEMS THAN ADAPTATION TO TOTAL, DEFINITIVE LOSS” (LEO ET.AL., 1999). RESEARCH STATES:

7. REASONS: • FEAR OF THE UNKNOWN • VISION FLUCTUATES • EMOTIONAL ROLLER-COASTER PARTIALLY-SIGHTED (UNSTABLE)

8. “RESEARCHERS HAVE LINKED THE RESPONSE TO BLINDNESS TO A GRIEF REACTION, IN WHICH PATIENTS MOURN THE LOSS OF THE SIGHTED SELF” (LEO ET. AL., 1999). RESEARCH STATES:

9. ELISABETH KUBLER-ROSS • 5 STAGES: • DENIAL AND ISOLATION • ANGER • BARGAINING • DEPRESSION • ACCEPTANCE GRIEF AND LOSS

10. MENTAL HEALTH DISORDERS: • ANXIETY • DEPRESSION • ASD • SLEEP DISORDER (CIRCADIAN DYSCHRONOSIS) DSM-IV-TR

11. “PEOPLE WITH VISUAL IMPAIRMENT MAY BE ANXIOUS ABOUT THE ATTITUDES OF OTHERS, WHETHER NEGATIVE OR PATRONIZING, OR AFRAID OF APPEARING CONFUSED, ARROGANT OR UNINTERESTED IF THEY DO NOT RESPOND APPROPRIATELY” (FEU, 2003). RESEARCH STATES:

12. EXCESSIVE WORRY • PANIC ATTACKS • OCD BEHAVIOR • IRRITABILITY • DIFFICULTY FOCUSING • SLEEP DISTURBANCE SYMPTOMS: ANXIETY

13. “IT IS WELL ESTABLISHED THAT A GREATER PROPORTION OF INDIVIDUALS WITH VISION IMPAIRMENT EXPERIENCE DEPRESSION THAN THOSE WITHOUT. STUDIES CONDUCTED LARGELY IN THE U.S. HAVE FOUND THAT UP TO A THIRD OF PEOPLE WITH VISION IMPAIRMENT REPORT CLINICALLY SIGNIFICANT DEPRESSIVE SYMPTOMS” (REES ET.AL., 2010). RESEARCH STATES:

14. EXTREME SADNESS • FEELINGS OF HOPELESSNESS • LACK OF INTEREST • DECLINE IN GRADES • ISOLATION • SUICIDAL IDEATION SYMPTOMS: DEPRESSION

15. DIFFICULTY WITH SOCIAL INTERACTIONS/RECIPROCITY • FAILURE TO DEVELOP PEER RELATIONSHIPS • REPETITIVE PATTERNS OF BEHAVIOR • LANGUAGE/COMMUNICATION DELAYS (ONSET PRIOR TO AGE 3) • BEHAVIORAL ISSUES/AGGRESSION SYMPTOMS: ASD

16. SEVERE MALADJUSTMENT OF THE SLEEP/WAKE SCHEDULE • BRIGHT LIGHT/BIOLOGICAL CLOCK • LONGER THAN 24 HRS. SLEEP CYCLE • INTERNAL TEMPERATURE/HORMONAL SECRETIONS • INSOMNIA/DAYTIME SLEEPINESS SYMPTOMS: CIRCADIAN DYSCHRONOSIS

17. DIFFICULT Y IN DEVELOPING SOCIAL SKILLS: • ATTACHMENT THEORY (JOHN BOWLBY); INTERPERSONAL ENVIRONMENT (SELMA FRAIBERG) • LACK OF MIRRORING • CHRONIC MISATTUNEMENT • PREMATURE ISOLATION POSSIBLE REASONS FOR MENTAL HEALTH ISSUES IN CHILDREN WITH VISUAL IMPAIRMENTS

18. LACK OF ENVIRONMENTAL EXPERIENCES • PARENTAL ATTITUDE • SOCIETAL VIEW/STIGMA OTHER REASONS

19. EARLY INTERVENTION • ADVOCATE AND EDUCATE • ALLY FOR STUDENTS/FAMILIES • FOCUS ON STRENTHS • REALISTIC GOALS FOR FUTURE • PROMOTE SOCIAL SKILLS HOW CAN YOU ASSIST STUDENTS IN YOUR SCHOOL/CLASSROOM?

20. A YOUNGSTER SHOULD BE REFERRED FOR PRIVATE THERAPY/COUNSELING WHEN SYMPTOMS CONSISTENTLY INTERFERE WITH DAILY FUNCTIONING. WHEN TO REFER?

21. CLINICAL THERAPISTS: • SOCIAL WORKERS (MSW) • PSYCHOLOGISTS (PhD) • PSYCHIATRISTS WHO CAN PROVIDE MENTAL HEALTH SERVICES?

22. COGNITIVE BEHAVIORAL THERAPY (CBT) • SOLUTION FOCUSED THERAPY (FAMILY) • PSYCHODYNAMIC PSYCHOTHERAPY THERAPEUTIC APPROACHES

23. INDIVIDUAL (ONE ON ONE) • FAMILY • SUPPORT GROUPS (STUDENTS, PARENTS) TYPES OF THERAPY

24. “I AM VERY CONFUSED BECAUSE SOMETIMES I WILL BE TALKING WITH SOMEONE ABOUT SOMETHING I AM VERY INTERESTED IN AND THEY’LL GET THE IDEA THAT I AM TOTALLY BORED. IN FACT, ONCE, WHEN I WAS TAKING A CLASS, MY TEACHER THOUGHT I FELL ASLEEP WHEN I WAS REALLY AWAKE AND LISTENING RATHER CAREFULLY…I DON’T HAVE MANY FRIENDS AND SOMETIMES I WONDER ABOUT THIS AND WHY I AM ALWAYS SO MISUNDERSTOOD. I WOULD LIKE TO LEARN IN THERAPY HOW TO EXPRESS MYSELF BETTER SO PEOPLE DON’T CONTINUE TO MISUNDERSTAND ME” (JEPSON, 2004). RESEARCH QUOTE:

25. QUESTIONS AND DISCUSSION IT’S YOUR TURN!

26. AMERICAN PSYCHIATRIC ASSOCIATION . (2000). DIAGNOSTIC AND STATISTICAL MANUAL OF MENTAL DISORDERS, FOURTH ED., TEXT REVISION WASHINGTON D.C.: APA. CARVIL, S. (2001). SENSORY IMPAIRMENTS, INTELLECTUAL DISABILITY AND PSYCHIATRY. JOURNAL OF INTELLECTUAL DISABILITY RESEARCH, 45 (6), 467-483. REFERENCES

27. CARVILL, S. (2001). SENSORY IMPAIRMENTS, INTELLECTUAL DISABILITY AND PSYCHIATRY. JOURNAL OF INTELLECTUAL DISABILITY RESEARCH, 45(6), 467-483. COOPER M., & LESSER, J. (2011). CLINICAL SOCIAL WORK PRACTICE: AN INTEGRATED APPROACH. BOSTON, MA: PEARSON.

28. FEU, M. & FERGUSSON, K. (2003). SENSORY IMPAIRMENT AND MENTAL HEALTH. ADVANCES IN PSYCHIATRIC TREATMENT, 9, 95-103 GREENSPAN, S. & WIEDER, S. (1998). THE CHILD WITH SPECIAL NEEDS. DECAPO PRESS. HARRIS, R. (2013). PRESENTATION: WORKING WITH FAMILIES WHO HAVE A CHILD OR PARENT WITH A DISABILITY. RHODE ISLAND: NASW.

29. JEPSON, L. (2004). FINDING THE PAPER CLIP: MAINTAINING CONNECTION WITH CONGENITALLY BLIND CHILDREN. JOURNAL OF INFANT, CHILD & ADOLESCENT PSYCHOTHERAPY, 3, 509-528. KUBLER-ROSS, E. (1969). ON DEATH AND DYING. NEW YORK: NY, COLLIER-MACMILLAN.

30. LANGDELL, C., & LANGDELL, T. (2011). COPING WITH VISION LOSS: UNDERSTANDING THE PSYCHOLOGICAL, SOCIAL, AND SPIRITUAL EFFECT SANTA BARBARA, CA: PRAEGER LEGER, D., GUILLEMINAULT, C., DEFRANCE, R., DOMONTS, A., PAILLARD, M. (1999). PREVALENCE OF SLEEP/WAKE DISORDERS IN PERSONS WITH BLINDNESS. CLINICAL SCIENCE, 97, 193-199.

31. LEO, D., HICKEY, P., MENEGHEL,G., CANTOR, C., FRANZP. (1999). BLINDNESS, FEAR OF SIGHT LOSS, AND SUICIDE. PSYCHOSOMOTICS, 40(4), 339-344. MEFSON, L. , DORTA, K., MOREAU, D., WEISSMAN, M (2004). INTERPERSONAL PSYCHOTHERAPY FOR DEPRESSED ADOLESCENTS. NEW YORK, NY: GUILFORD PRESS.

32. NOVICK, K. & NOVICK, J. (2005). WORKING WITH PARENTS MAKE THERAPY WORK. LANHAM, MD: ARONSON, ROWMAN & LITTLEFIELD. REES, G., TEE, H., MARELLA, M., FENWICK, E., DIRANI, M., LAMOUREUX, E. (2010). VISION-SPECIFIC DISTRESS AND DEPRESSIVE SYMPTOMS IN PEOPLE WITH VISION IMPAIRMENT. INVESTIGATIVE OPHTHALMOLOGY AND VISUAL SCIENCE, 51(6), 2891-2895.

33. SACKS, S., WOLFFE, K. (2006). TEACHING SOCIAL SKILLS TO STUDENTS WITH VISUAL IMPAIRMENTS. NEW YORK, NY: AFB PRESS. SPENCER, E., DUPONT, R., DUPONT, C. (2003) THE ANXIETY CURE FOR KIDS. HOBOKEN, NJ: WILEY & SONS, INC. TUTTLE, D., TUTTLE, N. (2004). SELF-ESTEEM AND ADJUSTING WITH BLINDNESS, THIRD ED., SPRINGFIELD, IL: CHARLES C. THOMAS.

34. EIGHTY PERCENT OF WHAT CHILDREN LEARN IS FROM VISUAL SOURCES. • IT IS IMPORTANT TO PRE-TEACH CONCEPTS AND ROLE-PLAY FOR COMPREHENSION; OBSERVE DEVELOPMENTAL BEHAVIORS OF SIGHTED CHILDREN AND THEN ASSESS SKILLS OF CHILD WITH BLINDNESS. • ALWAYS PROVIDE DESCRIPTIONS OF NON-VERBAL CUES; TEACH CHILD WITH BLINDNESS TO ADVOCATE AND ASK QUESITONS FOR CLARIFICATION; TEACH SIGHTED PEERS/ADULTS THE CORRECT WAY TO PROVIDE INFORMATION (E.G., ALLOW THE BLIND CHILD TO HOLD THE DOLL; NOT JUST DESCRIBE IT). ADDENDUM: TEACHING SOCIAL SKILLS TO CHILDREN WITH VISUAL IMPAIRMENTS (WWW.PERKINS.ORG, 2011).

35. INDEPENDENCE WILL ONLY OCCUR BY PROVIDING THE BLIND CHILD WITH MANY SOCIAL OPPORTUNITIES; DON’T ISOLATE WITHIN THE CLASSROOM OR HOME ENVIRONMENTS; GO OUT INTO TH E COMMUNITY AND TALK TO PEOPLE TO INSTILL CONFIDENCE. • THE VISUALLY IMPAIRED CHILD NEEDS TO TAKE RISKS; INTERACT WITH MANY TEACHERS AND PEERS; NOT JUST ONE PARAPROFESSIONAL; MANY NEIGHBORS AND FAMILY MEMBERS.

36. THERE IS ACCESS TO SOCIAL LEARNING IN DAILY LIFE; TAKE ADVANTAGE OF ALL ACTIVITIES. • “HANDS BECOME EYE.” PERMIT HANDS-ON EXPLORATION OF NEW SURROUNDINGS/INCLUDING FACES TO MATCH VOICES.

37. SOCIAL SKILLS PRACTICE PROMOTES SELF-CONFIDENCE AND SELF-RESPECT. BEING ACTIVE IN LIFE AND TAKING RISKS PREPARES THE CHILD FOR HER FUTURE LIFE. • IT IS CRUCIAL THAT BLIND CHILDREN HAVE AVAILABILITY TO POSITIVE ADULT ROLE MODELS WHO ARE ALSO BLIND OR VISUALLY IMPAIRED WHENEVER POSSIBLE.

38. HOLBROOK, M. (2006). CHILDREN WITH VISUAL IMPAIRMENTS: A PARENTS’ GUIDE. BETHESDA, MD: WOODBINE HOUSE, INC. LENNOX, T. (2012). LIVING FULLY WITH LOW VISION AND BLINDNESS. TRAFFORD PUBLISHING. ADDITIONAL READING

39. MAGEE, B., & MILLIGAN, M. (1995). ON BLINDNESS. NEW YORK, NY: OXFORD PRESS. MARTIN, H. (1996). WHAT BLIND PEOPLE WISH SIGHTED PEOPLE KNEW ABOUT BLINDNESS! ORLANDO, FL: MARTIN PUBLISHING.

40. RUBIN, L. (2012). DO YOU DREAM IN COLOR? INSIGHTS FROM A GIRL WITHOUT SIGHT. NEW YORK, NY: SEVEN STORIES PRESS. RUBIN, L. (2003). THE MAN WITH THE BEAUTIFUL VOICE. BOSTON, MA: BEACON PRESS.

41. SACKS, S., KEKELIS, L., GAYLORD-ROSS, R. (1997). THE DEVELOPMENT OF SOCIAL SKILLS BY BLIND AND VISUALLY IMPAIRED STUDENTS. NEW YORK, NY: AFB PRESS. SPUNGIN, S. (2002). WHEN YOU HAVE A VISUALLY IMPAIRED STUDENT IN YOUR CLASSROOM. NEW YORK, NY: AFB PRESS.