SW 644: Issues in Developmental Disabilities Developmental Disabilities Part II

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SW 644 Issues in Developmental
DisabilitiesDevelopmental Disabilities Part II

• Part II
• Lecture Presenter
• Mary Pearlman, M.D.

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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

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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

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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

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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

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Professionals and MR

• Professionals have been aware of Retardation
  throughout the history of humankind
• Parents and families similarly
• In our cultures recent history, starting in the
  60s 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

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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, Id 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 didnt want to think
  of me as a mother. To her the word mother
  connoted awfulness. I stopped calling her
  baby.

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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

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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

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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

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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

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• Stephen Hawking at the Jagellonian in Krakow,
  Poland.

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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.

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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

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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

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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.

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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

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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, wont sit still in circle time
• Primary Grades has no friends. Will only talk
  about weather.

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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 childs function and
  diagnosis

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Mourning Cycle

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

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Defenses

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

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Denial

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

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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.

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• Each person uses different defenses.

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DD can present as a couples crisis

• Example
• Father knows what the teacher said about the
  childs 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 hell out grow this. Father is
  using denial.
• Mom is enraged at dad. She says he wont 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 childs special programming.
  Mom is bargaining. If I do all this special
  help my child will get normal.

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A Couples 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

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Stress Resource Model

• Stress experienced Size of problem Resources
  available.
• Problems
• Doctors apts Time cost
• Special schooling Time cost
• No time with spouse
• Cant hang out with friends
• Cant 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.

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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.

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

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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

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• 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.

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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

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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

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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

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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