SW 644: Issues in Developmental DisabilitiesDevelopmental Disabilities Part II

Part IILecture Presenter:

Mary Pearlman, M.D.

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

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

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

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

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

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”.

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

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

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

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

Stephen Hawking at the Jagellonian in Krakow, Poland.

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.

Post-Screening After finding a difference in developmental function on

a screening1. Chart difference2. Tell ps3. Re-test periodically 4. Establish programming to support

developmental acquisition5. Follow up attending to

Dx Development support Family emotions/concerns Child emotions/concerns

6. Follow up, Follow up, Follow up

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

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.

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

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.

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

Mourning Cycle

Each person involved goes through the mourning cycle Denial Bargaining Depression Anger Acceptance

at a different rate

Defenses

We also use different defenses Defenses: help us maintain function

but distort the truth of Fact Feeling

Denial

Denial: Distortion of Fact Something that is true is thought NOT to

be true

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.

Each person uses different defenses.

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.”

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

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 homeCost 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.

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.

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

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

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.

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 Ageingmany experiential characteristics

Much of what you learn about Autism will be applicable to other life experiences

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

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

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