Authors: Marilyn Sass-Lehrer, Donna Mertens, and Kathryn Meadow-Orlans To contact the author for permission to use this PowerPoint, please e-mail: marilyn.sass-

Authors: Marilyn Sass-Lehrer, Donna Mertens, and Kathryn Meadow-Orlans

To contact the author for permission to use this PowerPoint, please e-mail: marilyn.sass-lehrer@gallaudet.edu

To use this PowerPoint in its entirety, please give credit to the authors.

Experiences of Families with Young Children who are Deaf

and Hard of Hearing: Implications for Professional Preparation

Marilyn Sass-Lehrer, Donna M. Mertens, Kathryn Meadow-Orlans,

Gallaudet University, Washington, DC

Association of College Educators-Deaf and Hard of Hearing

San Diego, February 2001

Families and Deaf & Hard of Hearing Children in the U.S.

Cultural Diversity 1/3 non-White

Linguistic Diversity 1/3 non-English

Economic Diversity Diversely Able

1/3 identified disability Diverse Hearing

Ability

Presentation Overview

Description of Research Project Issues & Advice –

Hearing Parents Deaf/HH Parents Families with Children of Color Families with HH Children Families with Children with Disabilities

Implications for Preparation

Purpose of Study

To investigate the early intervention experiences and services received by families with young deaf and hard of hearing children

Research Design

National Survey 404 Families 6 -7 Year Old Children

Telephone Interviews Focus Groups

Parents Professionals

Summary of Survey

46% Deaf 54% Hard of Hearing 32% Other Disabilities Hearing Loss Identified Late Early Intervention 1 year after ID Evaluation of Services Positive

Interviews

Families with Hard of Hearing Children Families with Deaf Parents Families with Children with Disabilities Families with Children with Cochlear

Implants Families of Color

Interview Areas

Discovery of Hearing Loss Early Intervention Services Decision Making Process Parents’ Concerns Service Satisfaction Advice for Professionals Advice for Other Parents

Hearing Parents’ Issues

Do not suspect hearing loss

Assume behavioral or language delay

Concerns dismissed Information

incomplete or biased Decisions

Advice for ProfessionalsHearing Parents

Listen to us! Respect us Be knowledgeable Be honest Tell us everything

I think a lot of professionals forget when they’re working with families to treat them as though they’re a family….not just another face. You know, really listen to what the parents are saying…the teachers have college training, but a parent really knows their child…They know better what works for their child than a teacher does from reading it in a book.

Deaf and Hard of Hearing Parents

Deaf/HH Parents 10% Deaf Mothers 11% Deaf Fathers 5.5% Only 1 Parent - D/HH 7.5% Both D/HH

47 Parents with 1 or both D/HH 26 Parents both parents D/HH

Children of Deaf Parents

Hearing Loss Identified Earlier More Deaf Children Fewer Hard of Hearing Children Fewer Children with Multiple Disabilities Differences in Service Participation Differences in Evaluation of Services

Deaf Parents’ Concerns

Education Challenging Age-Appropriate Emphasize Reading

Social Experiences Deaf Peers Deaf Role Models Opportunities

Communication Hearing & Deaf Interpreters

Advice for ProfessionalsDeaf Parents

Listen to us! Respect our opinions Involve us in decision making Improve sign language Raise expectations of deaf children

Advice for ProfessionalsDeaf Parents

“I think a lot of the problem is that the hearing professionals….that

work with deaf infants are not proficient in sign. So, many of us…have interpreters because

these people really can’t sign fluently.”

Advice for Professionals Deaf Parents

“I haven’t seen the deaf parents complain about that, they’re

usually very tolerant because they do get such good services from them for their children,which is

what they are there for…but I think there would be a better

relationship between them if they were more proficient in sign.”

Special Concerns of Parents with Hard of Hearing Children

Social Development Speech and Language Development Hearing Aids Cognitive Development Placement and Appropriate Services Changes in Hearing Abilities

Advice for Professionals: Parents with Hard of Hearing Children

Respect Our Feelings Listen to Us Give Options &

Appropriate Referrals Communicate Better Provide Support

Groups

Well, they definitely have to be sensitive to the parents who are emotional, like myself. I balled like a baby for the first week. I was calling them constantly and they were reassuring me. They have to be sensitive because it’s a traumatic thing for the parent. I was like traumatized, because I didn’t know what I was headed for in the future….

[Survey 76]

Concerns of Families with Children who have Disabilities

Communication How will we communicate? How will my child communicate with others?

Acceptance Will my child be accepted?

Appropriate Programs Behavior

Will my child’s behavior improve?

Advice for ProfessionalsParents with Children with Disabilities

Respect Us and Our Children Be Knowledgeable Tell Us Everything Be Honest and Direct Listen to Us

Hmm…nobody ever asked me that before. I can tell you what I didn’t like and then maybe you can extrapolate from there. I didn’t like being petted on the head and given sort of pat, rote answersto problems and issues that I was dealing with. …you get the impression that social workers and people in the business sort of refer to parents as in the third person as though I was sort of childlike, like my child was.

And if I had just been given credit for being a reasonably intelligent person who was interested in begin involved and aggressive in helping my child, I would’ve appreciated that.

I also would have appreciated as much facts, as many facts as were available. Because a lot of times when you have a child who is very ill, or has an uncertain future, the medical profession is hesitant to just tell you what they’re thinking. And so you end up worrying abut things you don’t even have to worry about.

Concerns of Families of Color

Communication

Acceptance

Fair Treatment

Opportunities

Advice for Professionals from Families of Color

Develop Positive Relationship with Parents Trust

Listen to Us Don’t dismiss our concerns

Tell us Everything Explain Keep us Informed Use different ways to share information

Involve Us Don’t Intimidate Us

Don’t try to intimidate us when we come around. Cause there are some teachers who hate for the parents to come around and be involved. They want to do their thing in private…don’t try to tell me to leave. I want to be comfortable with who I am leaving my child with, and if I don’t feel comfortable, he will not stay with you. It’s that simple. I’m not going to force him to stay with you, you’re a stranger.

Common Areas of Concern for Families with Deaf & HH Children

Services for their Children

Getting Information Resources Communication

Decisions Technology

Decisions Placement Decisions

Implications for Training

Professionals Doing a Good Job Areas for Improvement

Information Sharing Family Involvement Appropriate Services

Better Services Needed for: Deaf Parents Children who are Hard of Hearing Children with Disabilities Children & Families of Color

Publications

Support services for parents and their children who are deaf and hard of hearing: A National Survey. American Annals of the Deaf, 142 , 278-293. (1997).

Children who are Hard of Hearing: Are they Forgotten? Perspectives in Education and Deafness.16, (3), 6-8,24. (1998).

Sensitivity in the family-professional relationship: Parental experiences in families with young deaf and hard of hearing children. In Spencer, Erting & Marschark. The Deaf Child in the Family and at School. Mahwah, NJ: Erlbaum Associates. (2000).

Future Publication

Deafness, Education and Young Children: Parents Views (In preparation). Meadow-Orlans, Mertens, & Sass-Lehrer. Gallaudet Press: Washington, DC

Acknowledgements

This research has been supported by funding from the Gallaudet Research Institute. We are grateful to the parents and to the program personnel who have made this research possible.