It All Joins Up!Self determination + Sensory

perception + Self image + Emotional competence + The attitude & behavior of others + Self regulation + Executive

function + Availability for learning + Communication & language

David Brown

Educational Specialist

California Deaf-Blind Services

Brian Abery 1998

Self-determination is the power to make choices that reflect personal preferences, interests, and values, the prerogative to have control over one’s own life, and the freedom to develop a vision for the future and to have that vision respected by others.

So what’s wrong with the (education) world?(Brown 2004)

1. Concrete skills & outcomes versus processes.2. Real individualization is rare, and is not the same as

exclusion. Motivators are deliberately banned.3. People mistake compliance for emotional competence.4. “Our children are fires waiting to be lit, not vessels

waiting to be filled” (Flo Longhorn).5. Self-regulation issues are rarely on the agenda.6. Separation of ‘education’ and ‘therapy’.7. Too much focus on distance senses of vision & hearing

while other, more fundamentally important, sensory systems are largely unnoticed and ignored.

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The Senses and Deaf-blindnesso Deaf-blindness is obviously associated with

loss or impairment of vision and hearing, but other sensory systems are likely to be impacted and/or impaired

o Changing population of children with deaf-blindness now includes children with complex sensory needs (e.g., CHARGE syndrome)

o New Challenge: How should we think about multiple sensory impairments?

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The Senses and Deaf-blindness When there are multiple sensory impairments, it is

important to consider the impact on the child’s:

– Self-awareness

– Body-awareness

– Health (especially pain and discomfort)

– Attention

– Memory, Prior Knowledge

– Intentions, Tasks, Goals

– Motivators

– Emotion and Behaviour

Sensory Issueso Information may be missing, partial, distorted, or

fragmentedo Over-sensitivity &/or under-sensitivityo Processing time may be very extendedo Confusion & the need for consistency & predictabilityo But…..think about consistency versus varietyo Fatigueo Communication issues (receptive & expressive)o Movement & postural differenceso Idiosyncratic behaviours & misinterpretationo Developmental delay

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The SensesDistance Senses

• Vision

• Hearing

• Smell

Near Senses

• Taste• Touch• Vestibular• Proprioception

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Social and Emotional competence

SOCIAL COMPETENCE

An array of behaviors that permit a person to develop and engage in positive interactions with others

EMOTIONAL COMPETENCE

The ability to effectively regulate emotions to accomplish one’s goals

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Assessing social and emotional development

Development in both areas is sequential

Social development is related to inter-personal performance

Emotional development is internal and demonstrated in self-regulation, focus, and the initiation of both new and familiar activities

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Key concepts in understanding social and emotional development

• Feeling safe, secure, and understood makes successful learning possible

• The adult-child relationship is the key to resilience

• Physiological, emotional, and behavioral resilience is the key to development

• Nurturing care-giving provides genuine dialogue for attachment & mastery of self-regulation

• Brain research shows that lack of “goodness of fit” may make the child prone to distress and to increased regulation problems

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“Goodness of fit” (1)

It is critical to brain development, secure attachment, and eventual self-regulation of emotions and behavior

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“Goodness of fit” (2)

The child can demonstrate their physiological and emotional needs, and familiar people can note and respond to these needs.

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“Goodness of fit” (3)

Occurs easily if the adult has learned to read and respond to the infant’s cues, and if the adult’s current life circumstances are not overwhelming and provide the necessary social, emotional, and economic support

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Risk factors• Infant temperament is intense, cues are

unusual, sporadic, resistant, or inconsistent

• The above may lead to increased sensitivity, proneness to distress, and self-regulation issues

• Neurobiological vulnerabilities may interfere with attachment

• Multiple issues result in altered social and behavioral competencies in both infant and adult

• Social and environmental issues impinge on the infant-adult duo’s ability to interact in typical ways

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What is stress for ?o Stress helps us to work out and try to deal

with the many challenges that life presents to us

o If it is time limited then it is a normal, indeed an essential, process

o It protects us from harm and it also helps us learn to protect ourselves

o Without it we would fail to acquire many vital life skills

o Helps us to take risks and build skills

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What is stress for ? (Continued)….

o Helps us learn how to cope, and how to remain calm but alert (known as self-regulation)

o Provides opportunities for acquiring a memory bank of successful strategies

o Helps to develop effective problem-solving abilities

o Keeps life interestingo Provides motivators (eg. walking independently

& unsupported, jumping off the couch, watching a horror movie, mountaineering, giving a conference presentation)

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When, and why, can it be bad?o Stress should be time limited to be helpful. Extended

periods of stress result in stress hormones remaining active in the body for too long, and they can cause damage to the body

o The developing infant brain is especially at risk

o Prolonged stress can result in blood pressure problems, heart disease, diabetes, depression and associated self-abuse, poor memory, and a range of other mental health issues

o Inability to deal with stress effectively leads to feelings of helplessness, and may keep an individual in a state of hyper-arousal or hypo-arousal

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Stress

What does it look like?What makes it happen?When does it happen?What helps?Try a Personal Passport kind

of approach

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Protective Factors (from Cathy Nelson)

Secure attachment Good physical health Strong social network Responsive environment Feelings of competence Clear patterns of arousal & relaxation Physical exercise Relaxation opportunities Temperamental characteristics

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Key principles of Sensory Integration Therapy

1. The Just Right Challenge

2. The Adaptive Response

3. Active Engagement

4. Child-directed

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[Self-regulation]… “is defined as the capacity to manage one’s thoughts, feelings and actions in adaptive and flexible ways across a range of contexts”

Jude Nicholas, CHARGE Accounts, Summer 2007

Self-Regulation

Can we help the individual to recognize and deal with excessive levels of over-arousal or under-arousal, in socially acceptable ways? If self-regulation is difficult, can the individual learn ways of asking for help?

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Some important concepts

• Sensory modulation, enhancing, inhibition, sensory hierarchies

• Sensory diet,

self-stimulation

• Level of arousal

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The 9 levels of arousal (Carolina Record of Individual Behavior)

• Uncontrollable agitation• Mild agitation• Fussy awake• Active awake• Quiet awake• Drowsy• Active sleep• Quiet sleep• Deep sleep

1. Where are you on the ladder of arousal?

2. Where do you need to be?

3. How can you get there?

Using the ladderFewer stepsIndividualized vocabularyWords/ symbols/ picturesRe-visiting/ social storiesRole playWhat do you like/need?

Jobs for us

•“Reading” (ie. observing & interpreting)

•Making connections

•Helping the individual “feel” their body

•Providing an increasingly precise vocabulary of emotions/states

•Directing the individual’s attention

•Reminding the individual of strategies

•Matching/sharing experiences & feelings

“Exploring executive functioning”-Amanda Kirby

•Activation – organizing & prioritizing, initiating, getting started•Focus – sustaining & shifting, completing•Effort – regulating alertness•Emotion – managing frustrations, modulating emotions, keeping perspective•Memory – remembering, accessing recall, recognizing & remembering a sequence•Action – monitoring & regulating self-action without impulsivity, or poor context or poor pacing

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David Wiley “Where is there joy in this IEP?”(www.tsbvi.edu/Outreach/seehear/fall04/joy.htm)

Find out what is motivating to the studentAssess to see if the student is enjoying the

day at schoolPlan activities that incorporate motivating

elements for the studentAlternate less motivating activities with ones

that create joyTeach language using highly motivating

topicsTeach literacy using highly motivating topics

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“Facilitating the Self-determination of Youth and Young Adults with Deaf-Blindness

Brian Abery, Deaf-Blind Perspectives, Winter 1998-99

Characteristics of self-determination include the following:

An awareness of personal preferencesThe ability to set goalsThe ability to use the skills one possesses

to achieve goalsThe ability to evaluate progress toward a

goal and learn from experience

Self-determination for Children & Young Adults Who Are Deaf-Blind Morgan Bixler McNamara 2002

Skill development

Knowledge

Attitudes and beliefs

Barriers

Resources

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Lilli Nielsen

“Emotional development involves mastery”

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“The limits of my language are the limits of my world.”

Ludwig Wittgenstein

“She had lost the art of conversation but not,

unfortunately, the power of speech.”

George Bernard Shaw

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Rebecca Shahmoon-Shanok“Giving Back Future’s Promise”

We can see how, by varying and repeating similar pictures a myriad of times, the development of love and play; of attention and shared attention; of cognition and differentiated emotions; of communication and organization; of the use of symbol and narrative; and of an internal sense of safety and hope happens all of a piece, simultaneously, each element woven into all of the others in the context of contingent, reciprocal attachment. How ordinary and how extraordinary it is that so much happens within relationship: autonomy grows out of attachment.

McInnes & Treffry “Deafblind Infants & Children” 1982

Communication can be summed up as our attempts to obtain

information from and impose order upon the

world around us

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The “normal” development of communication skills and language

o There is a wide variability in learning styles and patterns

o Children are active participatorso The adult’s role is crucially importanto Children have an inbuilt tendency to notice,

organize and interact with the worldo The amount and variety of the experiences

children are given will have a significant impact on the realization of these inbuilt tendencies

Strategies used by caregivers to “teach” language to infants

LINGUISTIC ADAPTATIONS

• Pitch is often exaggerated

• Intensity variations are marked

• A longer duration is given to content words

• Speech is slower, with longer pauses between utterances

• A smaller number of different words is used than with older children

• The words used tend to be concrete rather than abstract

• The same words are used more frequently

Other strategies used by caregivers to “teach” language

• Talking about shared perceptions at the time the object or event is the focus of the child’s attention

• Providing models for the child to imitate, and expanding the child’s imitations and spontaneous utterances

• Asking questions• Using incomplete

sentences• Being repetitive• Positioning the

important forms and structure first in sentences

• Generally using a less complex communicative style

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Communication Steps1) Alert the child to your presence

2) Alert the child to the coming activity

3) Introduce the activity

4) Do, and discuss, the activity

5) On completion, review what you have

done (eg. What is different now?)

6) Let the child know that you are leaving

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Individualization

I would argue that what people with an intellectual disability need more than anything else is to be accepted and respected as they are. The aim of all of us who engage with them should be to support who they are, to provide the supports so they can be who they are, and to interact with them in such a way that their ways of being are appreciated and nurtured rather than undermined and dismissed. What this requires is stretching our rules of engagement and intimacy.

Jani Klotz

Alberto Manguel“A History of Reading” (1996) p7

“We all read ourselves and the world around us in order to glimpse what and where we are. We read to understand, or to begin to understand. We cannot do but read. Reading, almost as much as breathing, is our essential function”

Alberto Manguel“A History of Reading” (1996) p6-7

The readers of books extend or concentrate a common function to us all. Reading letters on a page is only one of its many guises. The astronomer reading a map of the stars that no longer exist; the Japanese architect reading the land on which a house is to be built so as to guard it from evil forces; the zoologist reading the spoor of animals in the forest; the card-player reading her partners gestures before playing the winning card; the dancer reading the choreographer’s notations, and the public reading the dancer’s movements on the stage; the weaver reading the intricate design of a carpet being woven; (cont.)

Alberto Manguel“A History of Reading” (1996) p6-7

…the organ player reading various simultaneous strands of music orchestrated on the page; the parent reading the baby’s face for signs of joy or fright, or wonder; the Chinese fortune teller reading the ancient marks on the shells of a tortoise; the lover blindly reading the loved one’s body at night, under the sheets; the psychiatrist helping patients read their own bewildering dreams; the Hawaiian fisherman reading the ocean currents by plunging a hand into the water; the farmer reading the weather in the sky - all these share with book-readers the craft of deciphering and translating signs