Serving over 1,000 individuals with disabilities and their families in Bergen and Passaic Counties Since 1947

Serving over 1,000 individuals with

disabilities and their families in Bergen and Passaic

Counties

Since 1947

Early Intervention

We hold these truths to be self-evident, that all men are created equal, that they are

endowed by their Creator with certain unalienable

Rights, that among these are Life, Liberty and the pursuit

of Happiness… Declaration of Independence

“Accept Me As I Am, Only Then Can We Discover Each Other” Federico Fellini

People First…

Disability Second

We Are People First Each of us is Different. We all have certain strengths and weaknesses. We all have the right to be the way we are and to become the way we want to be. Sometimes we think it is wrong to be different and try to be like another person or group of persons. Being different is good. It is easier to be ourselves, than to try and be someone else. We all have some disabilities. A disability is only part of our different-ness. It is not an important part of us. Sometimes people don’t understand this. They may put labels on us and treat us poorly, this is not because they are mean people, and it is because they didn’t understand. We can help teach them. We are all members of the human family. We all have things that we can do well and those we don’t. Sometimes we treat people based on the way they look or act. We should not make decisions about people without really getting to know them. We must accept others if we expect them to accept us.

Then the world will be a better place for all of us to live. from “ We are all People First”- by Nebraska Self Advocacy Services and John McGill .

Common Developmental

Disabilities

•Intellectual Disabilities•Autism Spectrum Disorder•Cerebral Palsy

Intellectual Disability

AAIDD definition: A disability characterized by significant limitations both in intellectual functioning and adaptive behavior as expressed in conceptual, social, and practical adaptive skills.

Intellectual Disability

Also referred to as: Cognitive Disability Includes many syndromes as well as unknown

causes Down Syndrome Mosaic Fragile X FAS

• May occur with Autism and Cerebral Palsy

Challenges Faced by Some Individuals with Intellectual Disabilities

•Communication•Attention Span•Problem Solving•Concrete vs. Abstract Thinking•Cause and Effect•Memory (multi step directions, carry over)•Generalization•Impulsivity•Gross and Fine Motor Skills•Hyper/Hypo Activity•Social Cues

Autism

“children and adults with autism exhibit atypical, repetitive behaviors and deficits in social and communication skills. Autism is usually diagnosed during the first three years of life and is four to five times more prevalent in boys than in girls. It knows no racial, ethnic or social boundaries.”

From Autism NJ

Autism

Autism Spectrum Disorders/Pervasive Developmental Disorders (PDD)

√ Autism√ Asperger’s Syndrome√ Childhood Disintegrative Disorder (CDD)√ Rett’s Syndrome√ PDD – Not Otherwise Specified (PDD-NOS)

Challenges faced by some Individuals with Autism

1. Some individuals with autism do not spontaneously reach out to others to share information or feelings and often do not know how to engage in simple social interactions.

1. There is often a delay in or a lack of development of spoken language. Many individuals with autism do develop speech. People with autism may have difficulty understanding non-verbal communication (e.g. body language, facial expressions, and frequent eye contact).

1. People with autism could have a restricted range of interest, periods of sustained activity (i.e. rocking, picking, flapping, etc…), resistance to changes in routine, unusual attachment to objects, difficulty with transitions, sensory integration challenges.

Cerebral Palsy “Cerebral palsy, also referred to as CP, is a term used to describe a group of chronic conditions affecting body movement and muscle coordination. It is caused by damage to one or more specific areas of the brain, usually occurring during fetal development; before, during, or shortly after birth; or during infancy.” - United Cerebral Palsy (UCP)

23-44% of people with CP will have some type of cognitive impairment.

Cerebral Palsy Affects body movement and muscle

coordination

Common types of Cerebral Palsy Spastic, Athetoid, Ataxic, and Combined

Common characteristics: Muscle tightness or spasticity Involuntary movement Disturbance in gait or mobility Difficulty swallowing Problems with speech

United Cerebral Palsy

Video NJ Self Advocacy Project- Respect

VideoRepresent

VideosInterview with a Child with Autism Spectrum Disorder

Introducing Children and

Their Families To The Library

VideoRepetitive Behaviors/

Transition

Supporting Behavior

Provide Structure Consistent

schedule/routine Social Story/Story Board

Eliminate distractions Keep materials in a box

Supporting Behavior

Support Transitions Provide concrete warning (2 more pages) Tell when get to end (this is the last page) Facilitate end “good bye book” Put book away in box or hold till end Introduce next activity Ending song or ritual (clean up song)

Supporting Behavior

Don’t sweat the small stuff

Find out what should be ignored

Use parent , teacher or therapist as a resource

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Communication

All people communicate.

People communicate for the same reasons – have their needs met, express feelings, build relationships, learn, etc…

Behavior is communication.

All communication is meaningful & should be “listened” to.

Methods of Communication

Spoken word Voice tone Facial expressions Gestures Pictures Situational cues Written word Assistive Communication Devices Sign language

Supporting Communication

Identify the method the person uses to communicate.

If person has a communication device encourage him/her to bring it with them and use it - enlist help from parents


Just because a person does not speak using words does not mean they cannot hear or understand.

Receptive and expressive language skills are not always at the same


Use words that the person understands.

Keep communication simple and to the point- don’t use excess explanations/ verbiage

Keep communication concrete vs. abstract


Speak clearly, maintain eye contact, and listen.

Be sure you have their attention before speaking

Speak directly to the person not caregiver


Speak normally- don’t use baby talk, or sing song voice

Modulate voice tone and volume

Pair verbal communication with gestures and facial expressions


May need to repeat instructions given to the group directly to the person.

May need to repeat instructions to the person more than once.


Echolalia Perseveration Scripting Talking about things other

people not interested in

Video

Young Man with Asperger’s Syndrome


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Physical & Sensory Supports

Mobility Supports Support people to freely move throughout their

environment.

Motor Skill Supports Support people to manipulate objects.

• Visual & Auditory Supports Support People to better hear and see

Sensory Supports Support people to manage sensory challenges

• Mobility Supports

Some people may need support with using a wheelchair, stroller, walker, cane, etc. Others may need to be assisted up and down stairs or may need you to stand close to them in order to provide support when walking.

Ensure there are clear pathways for walking and ample room for adaptive equipment to navigate the room.

Include a space for wheelchairs in the circle or at the table.

Some individuals may need to sit in an armchair to mitigate balance issues.

Wheelchairs, walkers, canes, etc… are extensions of a person’s body. Do not lean or hang your personal items on a wheelchair without asking permission.


•Motor Skill SupportsSome individuals may have fine motor skills challenges.

This may affect their ability to grasp and manipulate objects (i.e. paintbrush).

large handle paintbrush/masking tape Paper in shallow box Hand-over-hand support

Extra time to complete the task.


•Auditory Supports-

Individuals who have hearing challenges may need to be seated in front of the presenter so they can hear better, read lips and see facial expressions and gestures.

keep your face toward the individual do not turn your head away

do not walk about the room and talkrepeat audience questions or answers

Use gestures and other visual cues


•Visual Supports

Individuals with visual challenges will also benefit from sitting in front of the presenter so they are close up to what is happening.

Describe clearly what you are doing Use large print books

Provide opportunity to touch and feel objects.


•Sensory Integration - Some individuals may have heightened sensitivity to sensory stimuli.

Seekers- need constant sensory input Explore tactilely or orally Bump into things Spinning, flapping, vocalizations

Deep Touch Need Breaks

Sit on lap, Hand on arm,

Touch book, turn page


Avoiders - Difficulty tolerating sensory inputLight – too brightSound- too loud, too muchTouch – avoidantSmell- avoidant

Give spaceWear headphones

No perfumeLower lights

Use brush to apply glueCrayons vs. paint

Vocalizations


•Other define space where child is to sit

Sit “upons”Beanbag seats

Pillows



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Learning Styles

Auditory Visual Tactile

Most people learn best when information is presented using more than one style.

Think about how you can present the same information involving more than one sense at a time. This will increase the chances of the person learning.

Three major types of learning styles and ways to use them:

1. Auditory – Spoken word/voice tone, keep sentences short and to the point, and use consistent language.

1. Visual – Use props and tools, demonstration, signs, gestures, facial expressions, pictures, reading, etc…

1. Tactile – Involve the individual in touching or pointing to a picture or object, picking up an item, or practicing a task

Learning Styles

More Adaptations and Activities

VideoMore Alike than Different

Age Appropriateness is a concept whereby activities are deemed to be appropriate to an individual’s chronological age.

The term is also used in the negative to describe activities which are inappropriate to an individual’s chronological age even though they might be appropriate to the individual’s developmental stage i.e. not age appropriate.

Age Appropriate

It is recommended that activities and materials for teens and adults with developmental disabilities be appropriate to the individual’s age.

This may require some adaptation to accommodate the developmental stage however does not allow for the use of children’s activities and materials.

Age Appropriate

Activities should:•Support the development of leisure skills & hobbies•Support the development of new interests•Support the enhancement of existing interests•Support the development of social connections with people with similar interests•Provide enjoyment

Age Appropriate

Activity Ideas:

Music club- ( 50’s, 60’s etc.) read about music icons, listen to music, start a fan club, collect album cover art replicas, start a scrapbook

Train club- read about trains, collect trains, show and tell with trains, visit train stations and take pictures of trains, start a train scrapbook

Current events group- read the newspaper together, discuss

Age Appropriate


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Resource Ideas:Comic books, magazines, encyclopedias, newspapers, web sites, coffee table books, biographies- can be excerpted and read aloud), high interest low literacy books.

Age Appropriate Topics:

Fashion Baseball Bugs Antique cars Gardening Nascar

Super heroes Astronauts and space Broadway Movies Music Wrestling

Videos

Autism Every Day

Videos

Girl Scouts

Working With Parents

Recognize where they are coming from

Fear of RejectionEmbarrassmentTheir Concern for other children and familiesExhaustionSensitivity to criticism being judgedGuilt


You set the tone for all parents and children Welcoming Willing and Accepting Sensitive Confident Humor Tolerant Flexible Willing to learn and try

Use them as a Resource


Separation- May need to gradually wean from parent

Can take one or a number of sessions

Sit next, then behind, then back of room, then out

Transitional object

Provide feedback mechanism


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People First LanguageExamples of People First Language

Now we say: We used to say: People with disabilities. The handicapped or disabled.

Paul has an intellectual disability (diagnosis). He’s mentally retarded.

Kate has autism (or a diagnosis of...). She’s autistic.

Ryan has Down syndrome (or a diagnosis of...). He’s Down’s; a Down's person; mongoloid.

Sarah has a learning disability (diagnosis). She’s learning disabled.

Bob has a physical disability. He is crippled/quadriplegic.

Mary is of short stature/she’s a little person. She’s a dwarf/midget.

Tom has a mental health diagnosis. He’s emotionally disturbed/mentally ill.

Nora uses a wheelchair/mobility chair. She’s confined to/is wheelchair bound.

People without disabilities. Normal/healthy/typical people.

Communicates with her eyes/device/etc… Is non-verbal.

Accessible parking, hotel room, etc… Handicapped parking, hotel room, etc…

She needs . . . or she uses . . . She has problems/special needs.

Kathy Snow, 2006

Never doubt that a small group of thoughtful committed

citizens can change the world;

indeed it is the only thing that ever does.

Margaret Mead

We hold these truths to be self-evident, that all men are created equal, that they are

endowed by their Creator with certain unalienable

Rights, that among these are Life, Liberty and the pursuit

of Happiness… Declaration of Independence

VideoStars Spangled Banner by

3 year old singer

Overview of Developmental Disabilities

Some material in this presentation Excerpted and adapted from:


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Adaptive Behavior Skills

Conceptual Skills Social Skills Practical Skills

Receptive and expressive language

Reading and writing Money concepts

Self-direction

Relationships Responsibility

Self-esteemUnderstanding social rules

Obeying laws Avoiding victimization (e.g. being taken advantage of)

EatingDressingMobilityToileting

Taking medicationPreparing mealsUsing the phone

Using transportationManaging money

HousekeepingJob skills

Adaptive skills are daily living skills needed to live, work, and play in the community. The adaptive skills are: communication, self-care, home living, social skills, leisure, health and safety, self-direction, fundamental academics, community use, and work.

General Information: 1. Limitations in present functioning must be considered within the context of community environments typical of the individual’s age, peers, and culture. 2. Valid assessment considers cultural and linguistic diversity as well as differences in communication, sensory, motor, and behavioral factors. 3. Limitations often coexist with strengths. (e.g. knows how to ride the bus, but needs to be reminded to take a shower; takes medication independently, but needs support to count change, etc.).

4. An important purpose of describing limitations is to develop a profile of needed supports. 5. With appropriate individualized supports over a sustained period, the life functioning of the person an intellectual disability generally will improve.

Autism

1. Autism is defined and diagnosed behaviorally.

1. The cause of autism is not known; however, there is much support that autism is a biologically based disorder.

1. No known factors in the psychological environment of a child have been shown to cause autism.

1. Although autism is a lifelong developmental disability it is treatable. Early diagnosis and appropriate intervention are extremely important.

1. Developmental and symptomatic patterns among individuals with autism can vary greatly.

1. Not all people with diagnoses of autism have an intellectual disability.

1. About 25% of all individuals with autism develop seizures

AutismDispelling Myths and Misconceptions

People with autism do make eye contact.

Many people with autism communicate.

Not all people with autism display exceptional skills.

People do not “outgrow” autism.

People with autism can show affection.

Supporting People with Autism

Be patient.

Take time to “listen,” even if the person doesn’t use words to communicate.

Use Assistive Technology when appropriate.

Recognize that the person’s senses may be over or under active. People with autism may:

Be very sensitive to sound. Recognize when TVs, radios, etc… need to be turned down or off

Be sensitive to touch or taste Engage in “self-stimulating” behavior

Types of CP

Spastic cerebral palsy: (affects 70% - 80% of people with CP) primary characteristic is stiffly and permanently contracted muscles.

Athetoid, or dyskinetic cerebral palsy: (affects about 10% to 20% of people with CP) characteristics include uncontrolled, slow, writhing movements typically affecting the hands, feet, arms, or legs and, in some cases, the muscles of the face and tongue, causing grimacing or drooling.

The movements often increase during periods of emotional stress and disappear during sleep. People with this form of CP may also have problems coordinating the muscle movements needed for speech, a condition known as dysarthria.

Types of CP

Ataxic cerebral palsy: A rare form of CP (affects an estimated 5% to 10% of people with CP) that affects the sense of balance and depth perception. Characteristics may include poor coordination; unsteady walking with a wide-based gait (feet unusually far apart). A person with this form of CP may experience difficulty when attempting quick or precise movements, such as writing or buttoning a shirt.

They may also have intention tremor. An intention tremor begins as a voluntary movement, such as reaching for a book, causing a trembling that affects the body part being used and that worsens as the individual gets nearer to the desired object.

Combined forms: It is not unusual for people with CP to have symptoms of more than one of the previous three forms. The most common mixed form includes spasticity and athetoid movements but other combinations are also possible.

Epilepsy

Neurological condition that involves seizures.

Seizures are caused by a sudden change in how the cells of the brain send electrical signals to each other.

A seizure is a change in sensation, awareness, or behavior brought about by a brief electrical disturbance in the brain.

The Epilepsy Foundation


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Common Types of Seizures Absence Seizure

(formerly “petit mal”) Brief lapse in awareness Staring, eye blinking, upward eye rolls

Complex-Partial Seizure (formerly “temporal lobe” or “psychomotor”)

Activity stops Dazed, staring expression Automatic, repetitious and purposeless behavior

Tonic-Clonic Seizure(formerly “grand mal”)

Convulsions (body stiffens) Person falls to the ground (body jerks, temporary loss of

consciousness)

Epilepsy

Seizures

Seizures vary from a momentary disruption of the senses, to short periods of unconsciousness or staring spells, to convulsions.

Some people have just one type of seizure. Others have more than one type.

Although they look different, all seizures are caused by the same thing: a sudden change in how the cells of the brain send electrical signals to each other

Epilepsy

Support for Seizures

Keep the person safe.

Reassure the person.

Note the time, length and outcome of seizures.

Support During A Seizure

• Keep the person safe (e.g. block hazards such as stairs, doors, traffic).

• Remove any nearby objects that might cause injury.• Do not restrain the person.• Stay with the person until the seizure ends.• Be reassuring and supportive.

Support during tonic-clonic seizures (Do all of the above and…):•Safely help the person to the floor. •Cushion the person’s head using a small pillow or folded clothing.•Loosen tight clothing.•Do not place anything in the person’s mouth or between the person’s teeth.•When the seizure ends, if needed, place the person on their side, with the face•toward the floor (to allow secretions to drain).•If the person does not resume breathing after the seizure, call 911 & start•CPR.•Let the person rest until fully awake.

Call 911 if: first seizure, multiple seizures, over 5 minutes, injured during a seizure, pregnant, diabetic, not part of normal seizure history, you are not sure

Dual Diagnosis People are labeled as having a dual diagnosis

when they have both a developmental disability and a mental health diagnosis.

Some Common mental health diagnoses: Anxiety Disorder Depression Bipolar Disorder Schizophrenia Dementia

Remember only a doctor or psychologist can make a mental health diagnosis. Do not make assumptions based on “symptoms.”

PicaAn eating disorder involving a compulsive craving toeat non-food items, lasting more than one month.

Know the warning signs of Pica: Repetitive consumption of non-food items The eating behavior is considered inappropriate for the

individual’s age or developmental stage (older than 18 to 24 months).

The eating behavior is not a part of a cultural, ethnic, or religious practice

Support: Pica can be life threatening. Close supervision andremoval of items that the person might eat may benecessary for safety.

Dementia

Alzheimer’s Type Cause of 50%-60% of all dementia

Risk of Alzheimer’s increases with a diagnosis of Down syndrome


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Other Disabilities

Fragile X Syndrome

Prader-Willi Syndrome

Rett’s Syndrome

Spina Bifida

Traumatic & Acquired Brain Injuries

Tourette Syndrome

Some of the people may have the following disabilities:

… and many others

Documents

Serving over 1,000 individuals with disabilities and their families in Bergen and Passaic Counties Since 1947