The Role of Early Intervention Programs in Providing Family Support

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The Role of Early Intervention Programs in
Providing Family Support

• Karen Clark, M. A. 1, 3
• Paula Pittman, PhD. 2
• UTD/Callier Center for Communication Disorders 1
• Dallas, TX
• SKI-HI Institute 2
• Logan, UT
• National Center for Hearing Assessment and
  Management 3
• Logan, UT

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Faculty Disclosure

• In the past 12 months we have not had a
  significant financial interest or other
  relationship with the manufacturer of the product
  or provider of the services that will be
  discussed in our presentation.
• This presentation will not include discussion of
  pharmaceuticals or devices that have not been
  approved by the FDA.

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Dreams

• When I found out I was pregnant, I began
  dreaming about this little one that was growing
  inside of me. I prayed that she would
  be.perfect in every way. My husband and I never
  even thought about her being born without
  hearing, so when.they asked if they could test
  her hearing.I agreed knowing that she would be
  fine.
• Kendra, mother of a 4 year old
• daughter who is deaf.

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Impact of Hearing Loss on the Family

• Family Interaction
• Communication
• Problem Solving
• Family Resources
• Support from Family, Friends, Deaf Community
• Health Care Services/Finances
• Parenting
• How to Raise a Deaf/Hard of Hearing Child
• Communication Strategies
• Gaining Unbiased Information on Communication
  Methods
• Managing Time for Therapy, Evaluations,
  Services and Family
• Support for the Child
• Locating Appropriate Educational Services
• Providing Opportunities for Childs
  Socialization
• Jackson Turnbull, 2004

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Impact on the Family A Parents View

• Our child was not born in a vacuum. The fact
  that he was born deaf impacted all of us, and
  continues to impact every member of ourimmediate
  and extended family.
• Donna, the mother of a 4 year old son who is deaf

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Family-Centered practice is a service model that
supports the whole family as the unit of service
and honors family choice and empowerment in
decision-making about services. Allen Petr,
1996
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Importance of Family Support

• Mothers who felt supported were less likely to
  report stress over having a child with hearing
  loss.
• Mothers who reported receiving strong support
  were determined to be better adjusted and more
  accepting of their child who had a hearing loss,
  despite the degree of hearing loss or degree of
  life stress they reported.
• Calderon Greenberg, 1999

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Differences in Stress and GrievingEarly vs. Late
Identified

• Early Identified
• Grieving process equally intense but often reach
  resolution sooner.
• Less guilt about not identifying the loss.
• More time to make choices for children.

• Late Identified
• Longer time to resolve grief.
• Frustration upon learning benefits of early
  identification.
• Guilt from not identifying loss sooner.
• Feeling of playing catch up with childs
  development.

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A Parent Speaks

• When I think of the first two years of my
  daughters life, a myriad of emotions still flood
  my heart.

Janet, parent of a daughter who is hard of
hearing and identified at the age of two.
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The Grieving Process
SHOCK AND DENIAL
PROTEST
DISORGANIZATION

• Sorrow
• Anger
• Panic
• Searching
• Resisting a return to normal
• Fear

• Emotional release
• Numbness
• Physical symptoms
• Sleeplessness
• Lack of appetite or overeating
• Denial of hearing loss or feelings about it

• Depression
• Guilt
• Hopelessness
• Yearning
• Isolation
• Loss of interest in life

REORGANIZATION AND ACCEPTANCE

• Finding new meaning
• Recovery
• New sense of hope
• Decrease of deep sadness
• New spiritual and personal growth
• Facing reality
• Learning to let go
• Accepting responsibilities

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A Parent Speaks
There are still moments of hurt or Why
Matthew? when I see other babies.We are
optimistic that the hearing aids will help, and
he will learn speech as well sign.
We know there will be ups and downs always, but I
am sure we will get it done. We have to we are
Matthews family. Anonymous grandparent
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A Parent Speaks

• Hannah was ten days old and we were told she was
  profoundly deafI was worried confused, sad,
  angry, tearful.
• When Hannah was 6 months old, I had come to the
  place I wanted to celebrate it (that Hannah was
  Deaf).
• Shyanne, mother of a 2-year old daughter,
  identified at 10 days old.

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Supports That Assist Families
Early Intervention Program is one family support

• Information
• Resources
• Professionals
• Parent to Parent
• Deaf/Hard of Hearing
• Adults

The Early Intervention Program may then assist
the family in accessing other areas of support.
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Role of Early Interventionistin Offering the
Family Information, Support, and Encouragement

• This roleis a challenging one because it
  involves a delicate balance between sharing
  information and providing support at the
  appropriate times. Families come to services
  with a wide variety of knowledge, emotions,
  needs, and desires. It is the.challenge to
  figure out with the family the best approach.
• The SKI-HI Curriculum, 2004

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Role of EI in Providing Information

• Directly provide families with information on
  communication, language, hearing aids and/or
  cochlear implants, and other developmental issues.

Professionals have a duty to educate, which in
our case went mostly unfilled. When a child is
first identified with a hearing loss, parents may
not know the questions to askTreat the
parentswith respect and give us the knowledge we
need.Dont forget that we are equal partners of
the team. Brian and Amy, parents of a who is
hard of hearing
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Role of EI in Providing Information

• Help families access other sources of information
  including brochures, books, websites, and
  resource guides.

My parent advisor has always been available to
help research any questions and concerns I may
have about my child. Anonymous Parent
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Role of EI in Providing Information

• Share Information on grieving process and on the
  impact of hearing loss on the family.
• Provide information on all points of view and all
  methodologies in an open, unbiased way.

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Parent View on the Need for Unbiased Information

• Please understand that we as parents want
  information without bias. We are smart enough to
  figure things out for ourselves. We really dont
  need you to do it for us. Just give us
  information and support.Dont assume that you
  know what is best for everyone, because.you do
  not.
• Thank heaven that we had an early
  interventionist in our home each week who was on
  our side and who supported us.
• Becky, mother of a 4 year old son who is deaf.

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Parent View on the Need for Unbiased Opinion

• I understand now that many professionals in this
  field have VERY strong biases, but as a parent, I
  want to let you all know that those biases are
  deadly.You need to talk to us, and get to know
  our individual child instead of giving us blanket
  opinionsThere is no such thing as one way for
  all children and anyone,.who says there is can
  only hurt parents.
• Eric, father of a 5 year old hard of hearing son

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Parent Access to Professional Support and
Information

• Parents may receive information and support from
  a wide range of professionals
• Audiologists
• Speech-Language Pathologists
• Medical Home
• Child care professionals/teachers
• Others

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EI Programs Facilitate Parent Access to
Professional Support and Information
Substantial Support for Access to Professionals
Minimal Support for Access to Professionals

• Assistance Continuum

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Parent/Professional Partnership

• Successful parent/professional partnerships are a
  major component of family support.

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Family-professional partnerships are mutually
supportive interactions between families and
professionals, which focus on meeting the needs
of children and families with competence,
commitment, equality, positive communication,
respect, and trust.Blue-Banning, Summers,
Frankland, Nelson, Beegle, 2004
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Characteristics of a Collaborative Partnership

• All acknowledge that each possess unique skills
  and knowledge that benefit the partnership.
• All demonstrate trust and respect for one
  another.
• Professionals recognize the decision-making power
  of parents in the partnership.
• Dinnebeil, Hale, Rule 1996

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Aspects Of Service That Enhance
Parent/Professional Partnerships

• An EI System that truly embraces and reflects a
  family-centered philosophy
• Consistent and frequent visits with the same
  service provider
• Flexibility in scheduling and service
  locations/options
• Visits conducted in the home on the parents
  turf
• Open communication between ALL team members
• Administrators who trust and respect their EI
  staff as capable professionals
• Highly knowledgeable, qualified early
  interventionists who have education about and
  experience with the disability and in working
  with families
• Dinnebeil, Hale, Rule, 1999

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Parent to Parent Support

• Hearing parents of deaf infants typically have
  not anticipated and may not feel prepared to
  parent a child who is deaf.
• Most hearing parents learn models of parenting
  from family and friends within their own circle.
• Contact with other parents of deaf children
  provide opportunities for contact with other
  parents who have been there

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Types of Parent to Parent Support
Formal
Informal
Local or state sponsored programs of
parent-to-parent support visits
Volunteers contact networks through
early intervention programs, schools, or clinics
School or clinic sponsored parent groups
Parent contacts at school events churches
or other venues

• The early intervention program may provide
  contacts and
• resources for families or may at times be a
  sponsoring agency.
• Knowledge of the importance of parent-to-parent
  support
• allows the EI to assist the parent in
  locating the appropriate
• resources.

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Parent Views on Connection

• Its helpful to talk to other parents who have a
  little more experience than you, who have been
  down that road.
• Shirley, mother of a son who is deaf

We had the opportunity to meet five other
families that we lean on for support. We see
these people as kind of a group we fit into when
we dont feel like anyone else understands the
whole thing. Franky, mother of a daughter
who is deaf
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Role of Deaf Adults

• In a study by Hintermair (2000) of 317 parents,
  those who reported having contact with deaf
  adults also reported less depression, less
  isolation, and increased interactional
  responsivity to their child. Unfortunately, only
  9.5 of parents had frequent contact with Deaf
  or HoH adults.
• In a study conducted by Watkins, Pittman, and
  Walden (1998), parents who received services from
  a Deaf Mentor reported less frustrations in
  communicating and interacting with their child,
  knowing and using six times as many signs with
  their child than parents in the control group
  that did not have access to Deaf adults on a
  regular basis.

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How EI Programs Can Facilitate Contact with the
Deaf Community

• Encourage your staff to learn American Sign
  Language and provide incentives to do so.
• Contact your state chapter of the National
  Association of the Deaf and ask to be added to
  their mailing list.
• Make an effort to attend events within your local
  deaf community.
• Invite local Deaf leaders to be members of
  advisory boards.
• Include the Deaf Community in events sponsored by
  your agency and provide adequate interpreters so
  communication is free-flowing.

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How EI Programs Can Facilitate Contact with the
Deaf Community

• Invite deaf adults to center-based programs for
  story-telling time
• Invite deaf and hard of hearing adults to speak
  to parents regarding their life experiences
• Respect deaf and hard of hearing adults for the
  insight they can bring to your program

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Our Deaf Mentor gave us more than information.
He gave us a picture of what our son had the
potential to bea complete success in a hearing
world. We looked at him and without any words,
we could see a whole different future for our
son Our dreams for our son changed Our
attitudes changed. There isnt a hearing person
alive, no matter how educated or experienced they
are, who could ever have given us the gift that
our Deaf Mentor gave us, and that gift was hope.
After that, we were open to learn anything. We
knew our son was going to be okay, and we were
going to be okay. It was exactly what I needed,
and I didnt even know it at the
time. -Mark, the father of a son who is deaf
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A Final Thought

• What we really want, really need as parents, is
  opportunities to contact other families with deaf
  children, help in making regular contact with
  adults who are Deaf and Hard of Hearing,
  information that is accurate, honest, unbiased,
  and fair, and then the emotional support from our
  early interventionist to make the decisions that
  are right for us and our child.

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We dont really care about your philosophical
battles, we care about our child and family. We
need support, and by giving us the things Ive
mentioned, you support us in ways you will never
comprehend.Renee, the mother of a daughter who
is deaf