Autism and the GrandparentAutism and the GrandparentConnectionConnection

The Role of a LifetimeThe Role of a Lifetime

Participants will:Participants will:• Understand Understand whywhy grandparents play a significant grandparents play a significant

role in the health and well being of the family of a role in the health and well being of the family of a child with autismchild with autism

• Understand practical ways that helpUnderstand practical ways that help

• Identify some unhelpful responsesIdentify some unhelpful responses

• Be inspired and motivated to beBe inspired and motivated to be

the best you can be for your familythe best you can be for your family

E + R = OE + R = O

EEvent + vent + RResponse = esponse = OOutcomeutcome

What are the EVENTS?What are the EVENTS?

Autism DiagnosisAutism Diagnosis

Family responseFamily responseTreatment Treatment decisions decisions

BehaviourBehaviour

SchoolSchool

DecisionsDecisions

Waiting listsWaiting lists

The only thing we can The only thing we can control…control…

EventEvent + +

ResponseResponse = = OutcomeOutcome

We We cancan choose: choose:

Our Our thoughtsthoughts

Our Our behaviourbehaviour

Our Our dreams and imagesdreams and images

You must take personal You must take personal responsibility . You cannot responsibility . You cannot change the circumstances, change the circumstances,

the seasons, or the wind, but the seasons, or the wind, but you can change yourself. you can change yourself.

Jim RohnJim Rohn

The potential you hold is life The potential you hold is life changingchanging

The Role of Grandparents:The Role of Grandparents:

Roots to a child - a past and a futureRoots to a child - a past and a future

Nurture emotional health and well Nurture emotional health and well being in children with autism and their being in children with autism and their siblingssiblings

Role model Role model

Physical presencePhysical presence

The Solution…The Solution…

Maintain Optimism

Build your knowledge, credibility and skills

Build relationships

Find the Gift

““Grandparents can be role models Grandparents can be role models about areas that may not be about areas that may not be significant to young children significant to young children directly but that can teach them directly but that can teach them about patience and courage when about patience and courage when we are ill, or handicapped by we are ill, or handicapped by problems of aging. Our attitudes problems of aging. Our attitudes toward retirement, marriage, toward retirement, marriage, recreation, even our feelings about recreation, even our feelings about death and dying may make much death and dying may make much more of an impression than we more of an impression than we realizerealize.. Eda LeShan Eda LeShan

What Does NOT Help?What Does NOT Help?

Questioning the diagnosis and insisting on Questioning the diagnosis and insisting on getting a second opinion getting a second opinion

Ignoring attempts to explain the diagnosis Ignoring attempts to explain the diagnosis and behaviourand behaviour

Dismissing the explanation provided by Dismissing the explanation provided by parents or doctors parents or doctors

BlameBlame

Insisting on certain treatments, therapy or Insisting on certain treatments, therapy or parenting methodsparenting methods

What Does NOT Help?What Does NOT Help?

Information overloadInformation overload

Concentrating your attention on the Concentrating your attention on the grandchild that does not have autismgrandchild that does not have autism

Emotional distanceEmotional distance

Overstepping boundariesOverstepping boundaries

Playing non-interference: “We do not want Playing non-interference: “We do not want to meddle.” to meddle.”

““BEING THERE”BEING THERE”Affirm and love your adult childAffirm and love your adult child

Listening to what is said and what is Listening to what is said and what is notnot said said

Accepting your grandchild “as is”Accepting your grandchild “as is”

Active ListeningActive Listening

Keep the disability in perspectiveKeep the disability in perspective

Be positive and hopeful Be positive and hopeful

Adhere to the limits and schedules established by your Adhere to the limits and schedules established by your children children

““Doing”Doing”Provide your children with respite Provide your children with respite opportunitiesopportunities

Play with your grandchildrenPlay with your grandchildren

Spend time with the siblings of the Spend time with the siblings of the exceptional childexceptional child

Encourage your grandchild’s Encourage your grandchild’s independenceindependence

Read with your grandchildRead with your grandchild

Share special InterestsShare special Interests

What attitude are you modeling?What attitude are you modeling?

Is your grandchild learning anger? Is your grandchild learning anger? Hostility? Resentment? Fear? Blame?Hostility? Resentment? Fear? Blame?

OROR

Is your grandchild learning hope? Is your grandchild learning hope? Persistence? Faith? Optimism? Persistence? Faith? Optimism?

Collaboration?Collaboration?

““If we make our goal to live a life of If we make our goal to live a life of compassion and unconditional compassion and unconditional love, then the world will indeed love, then the world will indeed become a garden where all kinds become a garden where all kinds of flowers can bloom and grow.”of flowers can bloom and grow.”

Elizabeth Kubler-Ross Elizabeth Kubler-Ross

Thriving Day by DayThriving Day by Day

Reduce the amount of talkingReduce the amount of talking

Reframe questions into statementsReframe questions into statements

The gift of RitualsThe gift of Rituals

Pictures, lists and diagrams are far more Pictures, lists and diagrams are far more meaningful to most people with autism meaningful to most people with autism than are wordsthan are words

Small but MIGHTY Tools!Small but MIGHTY Tools!List the sequential steps of the task, List the sequential steps of the task, providing visual cues to each stepproviding visual cues to each step

Visual schedules: pictures, writtenVisual schedules: pictures, written

Clear beginning and ending to tasksClear beginning and ending to tasks

Clear visual rules and regulationsClear visual rules and regulations

Lists, written sequences, step by stepLists, written sequences, step by step

Small but MIGHTY Tools!Small but MIGHTY Tools!

Keep instruction systematic and direct Keep instruction systematic and direct

Support what you say with a picture or Support what you say with a picture or written word written word

Offer choices visually (only a few)Offer choices visually (only a few)

Stop talking so much!Stop talking so much!

Time TimerTime Timer

Processing Problems

Executive Dysfunction

Sensory Problems

Imitation Deficits

Weak Central

Coherence

Mind Blindedness

Language Problems

Surviving Surviving

Meltdowns and Meltdowns and

TantrumsTantrums

Is it any wonder that our Is it any wonder that our children with autism children with autism

OVER REACT?OVER REACT?

Behaviour is CommunicationBehaviour is Communication

I need your attention. I need your attention.

I need something tangible.I need something tangible.

I need to change something. I need to change something.

I need to escape or avoid I need to escape or avoid something. something.

I need to self regulate.I need to self regulate.

Weathering the StormWeathering the Storm

1.1. Stay completely calm.Stay completely calm.

2.2. Nix any notion that the child is a brat. Nix any notion that the child is a brat.

3.3. No discussion.No discussion.

4.4. Wait. Breathe deeply.Wait. Breathe deeply.

5.5. Remind yourself that your own Remind yourself that your own competence is not in question.competence is not in question.

6.6. Calmly and safely remove him from the Calmly and safely remove him from the environment.environment.

Self Regulation and Self Self Regulation and Self ManagementManagement

Teach HOW and WHEN to use:Teach HOW and WHEN to use:Stay Put boxStay Put boxSafe Place/safe personSafe Place/safe personTeach relaxation and belly Teach relaxation and belly

breathingbreathingYogaYogaThe Five Point ScaleThe Five Point Scale

MODEL SELF CONTROLMODEL SELF CONTROL

DO NOT Take Away Visual DO NOT Take Away Visual Support!!Support!!

Helps to clarify expectationsHelps to clarify expectations

Provides ongoing organization and Provides ongoing organization and structurestructure

Decreases processing timeDecreases processing time

Decreases reliance on adult prompts and Decreases reliance on adult prompts and cuescues

Reduces anxietyReduces anxiety

Through it all, Through it all,

REMEMBER…REMEMBER…

What are we working What are we working towards?towards?

AutonomyAutonomyEvery task, every skill needs to be Every task, every skill needs to be

taught so that the student will complete taught so that the student will complete it as independently as possible.it as independently as possible.

What happens when we…What happens when we…

Fail to fade promptsFail to fade prompts

Rescue individuals from struggleRescue individuals from struggle

Play helicopter parentPlay helicopter parent

Avoid personal responsibilityAvoid personal responsibility

AutismAutism

++

Optimism, Joy, Hope Optimism, Joy, Hope ____________________________________________________________________

Self EsteemSelf Esteem

A rich journeyA rich journey

Putting it in Perspective…Putting it in Perspective…

Child to Mom in response to whether to Child to Mom in response to whether to disclose his autism diagnosis: disclose his autism diagnosis:

“ “ You know mom, I am You know mom, I am so much MORE than so much MORE than

my autism.”my autism.”

The potential you hold is life The potential you hold is life changingchanging

I wish you joy onI wish you joy on

the journey!the journey!

Autism AspirationsAutism Aspirations

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