SW 644: Issues in Developmental Disabilities Developmental Disabilities Part II

1. SW 644: Issues in Developmental DisabilitiesDevelopmental Disabilities Part II Part II Lecture Presenter: Mary Pearlman, M.D.

2. How do cases of Developmental Disability present themselves? • Presentation is variable in terms of • Age • How hard it is to get a diagnosis (clarity) functional requirements of the culture. • In general the more dysfunction associated with the disease, the earlier the age of diagnosis and clarity of diagnosis

3. Age and Clarity of Diagnoses • The age and clarity of diagnoses can also depend on how familiar caregivers and the general public are with the criterion for the disorder treatment options available

4. Historical Treatment Options • 50 years ago the only formal treatment option for Mental Retardation was institutionalization. This option meant social dishonor for not being able • to parent your own child • Social dishonor related to the suspicion of “bad blood” • Losing the child forever to a frightening impersonal world

5. Denial Around Mental Retardation (MR) • There was a lot of denial around MR • Diagnosis was put off until inevitable • Severe cases were institutionalized • Mild cases lived and worked in community often with some success of physical tasks

6. Professionals and MR • Professionals have been aware of Retardation throughout the history of humankind • Parents and families similarly • In our culture’s recent history, starting in the 60’s there was a grass roots movement, very much driven by mothers supported by families and professionals, to provide diagnosis, educational and vocational training and family support • The age and manner of case presentation started shifting based on cultural factor • People had hope: • If you could diagnose MR • You could get help

7. The Mother Knows • Now what used to be called a mother is called a primary caretaker(s) I am going to use the term mother because it feels warmer to me. You can hear any term that feels best to you. Story: I have a friend. When I felt particularly warm towards her, I’d call her “baby.” This tells you a lot about my mind. I noticed that she looked upset when I called her “baby”. Turns out her mother was psychotically vicious and rejecting. Of course, she didn’t want to think of me as a mother. To her the word “mother” connoted awfulness. I stopped calling her “baby”.

8. Mothers/PCs • The mother or PC to be politically correct has the most contact with the child • Sees the spontaneously produced behaviors • Sees the child learning success • Sees the child response to shaping/soothing. • PCs generally know what babies are supposed to do • Family life and siblings • Memories of self as child • Comparing to friends kids • Comments from friends and family

9. Mothers/PCs (cont.) • As the closest observer of the child, the mother/PC is the 1st to know/feel something is off • They try to ignore it • They try to fix it • They feel like a failure or the kid is bad • They try to get help

10. Asking for Help • Mothers are very reluctant to ask for help. • There is shame that they are failing in the parenting role. • There is isolation from spouse, extended family and friends • Often there is criticism or unhelpful advice from others. • There is fear of the future • So approaches for help can be: • Indirect • Tentative • Angry • Confusing

11. Physical Problems • When there are physical problems • CP • Stigmata -- Down Syndrome • Seizures • Medical disease • The awareness that there is a disability is cleared + sooner • It will, however, take time and development to know all the areas of functional dysfunction and the degree of involvement

12. Stephen Hawking at the Jagellonian in Krakow, Poland.

13. Screening Tests • The introduction of screening tests has been an enormous help in milder cases. • They are used by 0-3 programs, Kindergarten screening, pediatricians, social workers. • Any agency that regularly interacts with PCs and children utilizes screening tests to pick up areas of differences in developmental function.

15. Post-Screening • After finding a difference in developmental function on a screening • Chart difference • Tell ps • Re-test periodically • Establish programming to support developmental acquisition • Follow up attending to • Dx • Development support • Family emotions/concerns • Child emotions/concerns • Follow up, Follow up, Follow up

16. Diagnosis • Diagnosis is done longitudinally • We observe the emergence of skills over time. • We remove obstacles to skill emergence • We assist skill emergence • We re-measure to assess the trajectory of development

18. Normal Functioning • How could function come back to normal at 3 years after being delayed at age 1 year and 2 years? • Suppose the child had a cleft palate, after surgical repair and therapy for oral muscular training language function returns to normal. • Another example: K screening language not produced. M says child talks at home. Child extremely shy. After getting comfortable in small K and getting to trust and love teacher will talk to teacher. S and L WNL.

19. Differential Diagnosis • For any single dysfunction there is a broad range of potential causes • This is called a differential diagnosis • The list of all the potential causes of a dysfunction

20. Dysfunction at Different Ages • A dysfunction will look different at different ages • This is because developmental expectations • Task • Change with age • Infant: does not do reciprocal play with mom • Toddler: does not play with other kids, ignores or isolates • Kindergarten: child screams in class, often hides behind shelves, won’t sit still in circle time • Primary Grades: has no friends. Will only talk about weather.

21. Post-Diagnosis • After clarification of developmental function and a diagnosis • The mother/PC can feel • Less shame • Less isolated as a gradually larger circle of spouse, extended family, professionals and friends understand the child’s function and diagnosis

22. Mourning Cycle • Each person involved goes through the mourning cycle • Denial • Bargaining • Depression • Anger • Acceptance at a different rate

23. Defenses • We also use different defenses • Defenses: help us maintain function but distort the truth of • Fact • Feeling

24. Denial • Denial: Distortion of Fact • Something that is true is thought NOT to be true

25. Suppression • Suppression: Distortion of feeling • Parent feels guilty for being unhappy at having a child with DD. • They suppress the feeling. • They become unaware of it. • A distortion of feeling.

26. Each person uses different defenses.

27. DD can present as a couple’s crisis • Example: • Father knows what the teacher said about the child’s delay. He faithfully follows through on appointments and goes to school meetings. He plays with and enjoys the child. He says “kids will be kids and he’ll out grow this.” Father is using denial. • Mom is enraged at dad. She says he won’t talk to her about the disability. He will not help with any of the special exercises. Mom devotes 2-3 hours a day to the child’s special programming. Mom is bargaining. “If I do all this special help my child will get normal.”

28. A “Couple’s Crisis” • Talking with the couple about their feelings, how differently they approach problem solving, exploring balancing family resources can significantly help the couple • The divorce rate is increased in families with a person with a developmental disability

29. Stress Resource Model • Stress experienced = Size of problem – Resources available. • Problems: • Doctor’s apts Time + cost • Special schooling Time + cost • No time with spouse • Can’t hang out with friends • Can’t work outside home Cost • Mother-in-law critical • Depression Time + cost • School meetings Time + cost • Unhelpful advice professionals / others. • All of these increases stress. • The more storess the greater the probability of system breakdown.

30. Stress Resource Model (cont.) • Stress experienced = Size of problem – Resources available. • Potential Resource: • Friend Understanding • Extended Family understanding • Help childcare – private/public • Healthcare • Special Education • Psychiatric Support • Therapy • Medications • Living expense help • Better inform professionals • All of these resources can help reduce the experienced • Size of the problem – the stress and improve system function.

31. If you want to help the child, help the system.

32. DD and Diagnosis of Cause • DD presents itself repeatedly • At many different ages • With presenting problems • DD presents itself over and over • Diagnosis of cause is one small aspect of DD care

33. Overtime with each presentation, we will be helping the individual and the family identify “the problem du jour” in any of the areas of life function and bring to bear appropriate resources.

34. Autism and DD • If this lecture is about autism, then why am I talking about DD? • Autism is one of the disabilities to which humans are subject • Although Autism has discreet characteristics and problems • Autism shares with other disabilities • Developmental • Mental • Physical • Ageing many experiential characteristics • Much of what you learn about Autism will be applicable to other life experiences

35. Optimizing Interventions • Do optimizing interventions save money? • Education of individual with DD • School • Vocational • Support for Family • Medical support • Meds and Therapy • May or may not save money

36. Optimizing Interventions (cont.) • Make community living possible • Improve quality of life for individual and family • Improve health and longevity of Mothers • Preserve parental employment • Increase individual with DD employment

37. Optimizing Interventions v. Not Optimizing • Optimizing interventions are expensive; not optimizing is also expensive • In some senses the difference is not just dollar cost but: • What you prefer to spend your money on? • What you want the world to be like? • Neither solution is cost free • This is a personal + societal value issue