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

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.

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.

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 Child’s Socialization Jackson & Turnbull, 2004

Impact on the Family – A Parent’s 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 our…immediate and extended family.”

Donna, the mother of a 4 year old son who is deaf

“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

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

Differences in Stress and Grieving Early 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 child’s development.

A Parent Speaks

“When I think of the first two years of my daughter’s 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.

SHOCK AND DENIAL

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

PROTEST

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

DISORGANIZATION

• • • • • • 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

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 Matthew’s family.”

Anonymous grandparent

A Parent Speaks

Hannah was ten days old and we were told she was profoundly deaf…I 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.

Supports That Assist Families

• Information • Resources • Professionals • Parent to Parent • Deaf/Hard of Hearing Adults Early Intervention Program is one family support The Early Intervention Program may then assist the family in accessing other areas of support.

Role of Early Interventionist in Offering the Family Information, Support, and Encouragement

“This role…is 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

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 ask…Treat the parents…with respect and give us the knowledge we need….Don’t forget that we are equal partners of the team.”

Brian and Amy, parents of a who is hard of hearing

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

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.

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 don’t need you to do it for us. Just give us information and support….Don’t 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.

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 opinions…There 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

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

EI Programs Facilitate Parent Access to Professional Support and Information

Substantial Support for Access to Professionals Minimal Support for Access to Professionals Assistance Continuum

Parent/Professional Partnership

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

“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

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

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 parent’s “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

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”

Types of Parent to Parent Support

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

Parent Views on Connection

“It’s 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 don’t feel like anyone else understands the whole thing.”

Franky, mother of a daughter who is deaf

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.

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.

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

“

Our Deaf Mentor gave us more than information. He gave us a picture of what our son had the potential to be…a 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 isn’t 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 didn’t even know it at the time.” -Mark, the father of a son who is deaf

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.

“We don’t really care about your philosophical battles, we care about our child and family. We need support, and by giving us the things I’ve mentioned, you support us in ways you will never comprehend.”

Renee, the mother of a daughter who is deaf