NAMI Basics Education Program

1. NAMI Basics Education Program The fundamentals of caring for you, your family and your child with mental illness Companion Power Point Presentation 2008

2. Class 1 Agenda • Welcome • Introductions to NAMI • Introduction to Teachers • Introduction to NAMI Basics evaluation • Introduction to the NAMI Basics program • Participant Introductions • Welcome to Holland • This is the illness your family has to live with • Adjourn

3. NAMI Basics EvaluationDuke University: Dr. Barbara Burns Columbia University: Dr. Kimberly Hoagwood University of Louisiana: Dr. Catherine Estis • Goal: Offer course to more parents/caregivers free of charge • Demonstrate effectiveness • What do participants learn? • Impact on family • Measure • Before/after/3 month follow up • Forms • Informed consent • 4 brief questionnaires • Participation in the study is not required to take the course • Questions?

4. NAMI • National Alliance on Mental Illness • NAMI Tennessee, 45 affiliates • NAMI Robertson County • Support group to start in January • Founded in 1979 • Nation’s largest grassroots mental health organization • Mission • Improve lives of adults and children with mental illness • And their families • Support, Education, Advocacy, Research • Membership • $25.00 family, three level membership • $3.00 open door, three level membership • Membership not required, but helps NAMI be the nation’s voice on mental illness

5. NAMI Basics • For Families, other direct caregivers of children/youth • Child diagnosed, or might have: • Mental illness, or • Emotional disturbance • Goals: • Give information to help caregivers • Help caregivers cope with traumatic impact of mental illness on entire family • Decision tools to help you get care for your child • Help you care for yourself and the rest of the family • Handout #1: NAMI Basics Principles

6. Discussion • How do you feel about the idea that mental illnesses are brain disorders? • Physical illnesses • Like diabetes or heart conditions • It’s not your fault • But, you can take action to improve • Resiliency • Recovery

7. Class Introductions • Your name • Your occupation • Age & diagnosis of your child(ren) • Your relationship to child • Parent, grandparent, foster-parent.. • Most pressing issue • 50 words or less • What you hope to get from this class

8. Stigma & Mental Illness • Not casserole illnesses • Families, neighbors & friends don’t know what to say • Avoid us • Stigma is a mark of shame • Tipper Gore: “The last great stigma of the 20th century is the stigma of mental illness.” • NAMI is erasing stigma & discrimination against individuals & families • Pride in family resiliency • Child’s successes despite challenges • Handout #2: Stigma & Mental Illness • Handout #3: The Facts

9. Discussion • Why does society keep blaming families? • Think of a time when you felt blamed for your child’s problems with mental illness • What was that like?

10. Welcome to Holland • Handout #4: Welcome to Holland • Typical vs. Atypical • There is no “normal” child • Our children’s brain disorders are “invisible” • Public sees behavior, not disability • Blame adds to family burden • Handout #5: Mental Illness as a Catastrophic Event • But, our families have strength… • Handout #6: Predictable Stages of Emotional Reactions Among Family Members Dealing with Mental Illness

11. Catastrophic StressorsClass 1: Chart 1 An unanticipated event No time to prepare for it No previous experience about how to handle it Has a high emotional impact Involves threat or danger to self or others

12. Predictable Stages of Emotional ReactionsClass 1: Chart 2 Stage 1: Dealing with the Catastrophic Event Stage 2: Learning to Cope: “going through the mill” Stage 3: Moving into Advocacy: “CHARGE” Every reaction is normal Once you know where you are, then you can determine what you need. Discussion: What do you think about the “Predictable Stages?”

13. Symptoms of Mental Illness • Handout #7: Double edged sword of mental illness • Positive: Traumatic changes in child’s behavior • Negative: Traumatic losses due to brain disorder • Self-Care isessential • Put your own mask on first • Then you can help your child • Handout #8: Course Syllabus

14. Class 2 Agenda • Human Development • The Biology of Mental Illness • Getting an Accurate Diagnosis • Overview of some of the illnesses • Adjourn

15. Human Development • Freud, Erickson, Piaget, Koplewicz • Children develop in stages • One stage must be completed before the next can begin • Handout #1: Theories of Development • Freud: Child’s development depends on interaction with parents (mother). • Must achieve one stage before the next • Erickson: Lifelong human development • Piaget: Brain helps navigate stages • Handout 2: Koplewicz- children go through similar stages at different rates • Where your child is in developmental process • What your child is working on • Brain Development: conception – 3yrs, fastest brain development

16. Brain CellClass 2: Handout # 3

17. The Human BrainClass 2: Handout # 4

18. The Limbic SystemClass 2: Handout # 5

19. ADHD & ADD • Core symptoms for >6 months: • Inattention • Can’t pay attention to details • Avoid, dislike activities that require attention • Distractible, forgetful, careless, disorganized • Do not finish schoolwork • Hyperactivity & Impulsivity • Agitation, fidgeting, squirming • Interrupts, speaks out of turn • “On the go,” acts as if driven • Intrudes on others, escalates when reprimanded • Combined type • Low frustration tolerance • Symptoms have persisted since early childhood • Something was “off” from the beginning • Describe child as “never slowing down” • May misread the child as bad or stupid, wonder why the child is always in trouble in school

20. Major Depression • Core symptom is not sadness, but irritability and aggressiveness • Extreme irritability, aggressiveness • Angry all the time, sullen, • Physical complaints, headaches, stomachaches • Drop in grades, won’t do homework • Negative self-judgment, hypersensitive to criticism • Overreact to disappointment, frustration • Unable to have fun, withdraw • Lethargic, doesn’t care • Sleep and appetite, too much or too little • May have hallucination, delusion, paranoia • Observations from Home • Nothing pleases the child • Child is no fun to live with • Observe that child “’puts on a good face” in public • Worst symptoms at home

21. Depression in Teens • Twice as many girls as boys • May mask with high performance or by “hiding” at school or home • Sad, hopeless, empty • Sensitive, overreact to rejection, criticism, disappointment • Grouchy, sulky • Lethargic, no energy, sleepy • OR can’t control hyperactivity • Restless, aggressive, antisocial • High risk of substance abuse • Think they are different, no one understands • Stop caring about appearance • Thoughts of death • Increased risk of suicide • 3rd leading cause of death ages 15 - 19

22. Bipolar Disorder • Strong family history of bipolar • Extreme mood swings, may be rapid • Mania • Hair trigger arousal, set off by slightest thing • Irritable, oppositional, negative behavior • Rage usually controlled at school • Hyperactive, distractible, inattentive • Grandiose behavior • Hypersexual activities & comments • Sensitivity to heat • Craving for carbohydrates • Psychotic episodes; delusions, hallucinations • Depression • Observations from home • Child “always different,” ragged sleep cycles, nightmares • Severe separation anxiety • Sleep disturbance • Extreme physical sensitivity • Child worse at home than at school

23. Bipolar in Teens • Manic • Insomnia, active late at night • “Gonna do” many things, unrealistic expectations • Rapid, insistent speech • All or nothing thinking • Spending sprees • Reckless driving, DUI, car accidents • Hyper-sexuality, no regard for consequences • Lying, cutting class, sneaking out at night to party • Psychotic; delusions (may have romantic delusions), hallucinations • Depression • Crying, gloom & doom thinking • Moodiness, irritable • Fatigue, oversleeping, no energy • Insecurity, low self-esteem • School avoidance, plays sick, physical complaints • Isolation, pushes people away • Suicidal thoughts, attempts

24. Oppositional Defiant Disorder& Conduct Disorder • ODD • Negative, hostile, defiant • Persistent arguing, belligerent, stubborn • Intense rigidity, inflexibility • Touchy , resentful • CD • Aggression, cruelty to people & animals • Destructiveness • Deceitfulness • Disobedience • Lack of remorse • Observations from Home • Angry with child who doesn’t obey • Shocked, embarrassed by child’s behavior • Overwhelmed by criticism • Many school suspensions • Can’t take the child anywhere

25. ODD & CD in Teens • When not treated early, ODD & CD worsens in teens • Truancy, school failure, expulsion • Reckless, accident prone • Low self-esteem covered by cockiness. • Substance abuse • Serious harm to others: bullying, physical abuse, rape • Encounters with criminal justice system

26. Anxiety Disorder • Most common childhood mental illnesses • Separation Anxiety (panic disorder) • Intense anxiety at separation from parents • Worry that parents will die • Refusal to sleep alone, will not go to sleepovers • Plays sick to avoid school • Overanxious Disorder (GAD) • Overall worries • Dread of making mistakes, perfectionist • Too serious, tense, unsure, can’t take criticism • Deaf to reassurance • Avoidant Disorder (social phobia) • Acute shyness • Restriction of social contacts to family • Fear of being singled out, evaluated, called on • Phobic about specific situations • Observations from home • Concern over repeated school absences • Meltdowns occur when activities are forced • Catch 22: accommodating child’s fears risks school failure, yet so does sending child to school

27. Anxiety Disorders in Teens • Panic Disorder • Heart pounding, chest pain, shortness of breath • Sweating, trembling • Feeling of choking, nausea, dizziness • Fear of dying, losing control, “going crazy” • Social Phobia • Fear of specific social situations • Dread of humiliation, embarrassment • Avoidance of feared situations • Social Phobia (generalized) • Fears most situations • Inability to start conversations • Fear of participating in small groups • Fear of talking to authorities

28. Obsessive Compulsive Disorder (OCD) • Almost as common as ADHD • Twice as many boys as girls • Obsessions • Fear of contamination (germs) • Fear of danger to self/others (fire, death, illness) • Fixation on lucky/unlucky numbers • Need for symmetry/exactness • Excessive doubts • Forbidden, aggressive, perverse thoughts • Compulsions • Ritual handwashing, showering, grooming, cleaning • Repetitive counting, touching, going in/out, writing/erase/re-writing • Continuous checking, questioning, hoarding • Observations from home • Family must cooperate with rituals to avoid tantrums • Child too exhausted to play or join family activities • Bewildered & angry at child’s inability to control behaviors • Compulsions swamp home life, more subdued in public

29. Childhood Onset Schizophrenia • Rare, 1 in 40,000 • Slow emergence of psychotic symptoms • Early inhibition, withdrawal, sensitivity • Problems with conduct • Anxious, disruptive in social situations • Poor motivation and follow-through • School failure, special ed required • Inability to make friends, disinterested • Confusion about what is real, hears voices, delusions • Little emotion shown, speaks rarely, • Inappropriate emotion • Infrequent eye contact/body language • Observations from home • Child hears voices saying bad things about him • Stares at things that aren’t there • Child not interested in making friends • Odd behaviors pervasive in all parts of child’s life • Child appears “blank,” delays answering questions, asks for statements to be repeated.

30. Schizophrenia • Onset late teens • More common, 1 in 100 • Prodromal • Uncontrollable crying not linked with source of sadness • Agitation, weight loss, lack of attention to hygiene • Withdrawal, isolation, grades drop • Odd sensory experiences, odd beliefs & rituals • Feelings of cosmic importance, intensely religious • Suspicious, feeling of being watched, disliked • Acute “Positive” symptoms • Delusions & hallucinations • Grossly disorganized behavior, bizarre actions • Bizarre body postures, pacing, rocking, grimacing • Residual “Negative” symptoms • Blunted emotional responses • Lack of motivation, no goal directed activities • Inability to relate to others • Lack of insight that one is ill • Poverty of speech, brief responses • Observations from home • High functioning teenager falls apart, unrecognizable • Family engulfed in fear and panic, something is very wrong

31. Class 3 Agenda • Telling Our Stories • Treatment Options Available • The Medication Dilemma • Adjourn

32. Telling Our StoriesClass 3: Chart 1 • Child’s name and age • Child’s diagnosis/diagnoses • How old was the child when symptoms began? • What were the symptoms? • How is the child doing now? In school? At home? • How are YOU right now? Where are you on the Stages chart?

33. Getting Treatment • Request: Minimize provider “bashing” • Disclaimer: We discuss general terms, cannot suggest specific treatment, • Step 1: Pediatrician • May refer to mental health • Offer to treat child, including medication • Refer to school counselor • Handout #1: Value of Early Identification • Step 2: Contact community mental health agency • Handout #2: Mental Health Professionals • Talk to others regarding who to see, providers, clergy, families • May have a waiting list, pediatrician in the interim • Step 3: Evaluation is the treatment foundation • Handout #3: Psychiatric Evaluation • YOU are the CEO of your child’s care

34. Discussion • What was the process like getting treatment for your child? • Was there a downside when you got the evaluation? • What was the hardest part of the evaluation for you? • How did you feel when you heard the diagnosis? • Handout #4: Bio-psycho-social dimensions

35. Treatment Options • Outpatient: Child lives at home, goes for appointments • Inpatient: Child goes to hospital or residential treatment • When child poses risk to self/others • Day treatment/partial hospitalization: • Child at home for night, but in program all day • Once level of treatment is decided, treatment is recommended • Treatment plan • You and your child should be part of your child’s treatment planning • Outcomes: • Symptom reduction, improved school attendance, family relationships, decreased involvement with the law, substance abuse • Prevent need for more restrictive service, decrease hospitalization or out-of-home placement

36. Discussion • Tell us about your experience so far with navigating mental health treatment options.

37. Medication • Ground rule #1: • We won’t be playing doctor • Ground rule #2: • We will discuss general questions only. • Medication types have increased due to ability to study neurotransmitters & activity in the synapses

38. Class 3 Handout # 7 Two neurons in synaptic contact

43. Psychiatric Medication and Children • Few pharmacology studies on children, no long term studies • FDA approval is difficult, clinical literature builds case for “off label” use • Handout #11: FDA meds approved for Children and Youth • Black Box Warning: May cause serious adverse effects • FDA requires black box warning on antidepressants increased risk of suicide • Does not mean medication caused behavior • BUT needs monitoring to catch suicidality early

44. Risks of Anti-Depressants • Suicidal thoughts are part of depression • 2 phase response to anti-depressants • Initial lift in energy before mood lifts • “Energized state of despair,” increased suicide risk • Did anti-depressant cause suicidal thinking • Or was it part of the illness? • Either way, we must watch our kids closely during medication change • Since 2007, when black box warning issued • Decreased prescription of anti-depressants • Increased depression in children & teens • Increased suicide rates in children & teens • NAMI favors: • Informed consent of risks/benefits of treatment • Vs. risks of no treatment. • Careful monitoring, • Comprehensive treatment.

45. Discussion • What is your experience with deciding to use or not use medication with your child? • Handout #12: Classes of psychotropic medication • Handout #13: Parents’ Top Ten How to make sure your child gets the best possible treatment • More tip sheets in resource section • Name one thing you will do to take care of yourself this week

46. Class 4 Agenda • Family Burden • Communication Skills • Problem Solving Skills • Tips for Handling Difficult Behavior in Children • Crisis Preparation and Responses • Adjourn

47. Family Burden • Dealing with a child’s mental illness affects the well-being of the entire family • Family feels alone, shunned • Handout #1: Minimizing negative impact on other family members • Improving skills for difficult situations • Reduces family turmoil due to mental illness • Roles of other family members change • Other children may resent & blame the ill child • Parents may resent each other, especially about how to handle child’s mental illness • We cannot sacrifice the rest of the family to take care of the ill child • Handout #2: Minimizing Negative Impact on Family Members

48. Discussion • How has it been for you? • caring for your child with mental illness • while also living the rest of your life? • How have your other children handled the challenge? • What about your job? • What about your personal life?

49. Communication Skills • Good communication is difficult • Expressing what you want to say • So others understand what you mean • Understanding what others mean to say • Add mental illness • Concentration problems • Information processing problems • Intense, unpredictable emotions • Families living with mental illness • Extra need for good communication skills • You cannot control what your child says • Or perceives you to say • You CAN control words and tone you use • When parent communication changes • Child’s communication eventually follows • Handout #3: Communication Guidelines

50. I-Statements • Handout 4: I-Statements • Specific, direct comments • What you think, feel and want • You take responsibility • You say what you mean directly, but calmly • Calm facial expression & eye contact with child • I feel _______________ (feeling) • When you __________________ (action)