1. 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.edumarilyn.sass- lehrer@gallaudet.edu To use this PowerPoint in its entirety, please give credit to the authors.

2. 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

3. 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

4. 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

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

6. Research Design National Survey 404 Families 6 -7 Year Old Children Telephone Interviews Focus Groups Parents Professionals

7. 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

8. 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

9. Interview Areas Discovery of Hearing Loss Early Intervention Services Decision Making Process Parents Concerns Service Satisfaction Advice for Professionals Advice for Other Parents

10. Hearing Parents Issues Do not suspect hearing loss Assume behavioral or language delay Concerns dismissed Information incomplete or biased Decisions

11. Advice for Professionals Hearing Parents Listen to us! Respect us Be knowledgeable Be honest Tell us everything

12. I think a lot of professionals forget when theyre working with families to treat them as though theyre 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.

13. 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

14. 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

15. Deaf Parents Concerns Education Challenging Age-Appropriate Emphasize Reading Social Experiences Deaf Peers Deaf Role Models Opportunities Communication Hearing & Deaf Interpreters

16. Advice for Professionals Deaf Parents Listen to us! Respect our opinions Involve us in decision making Improve sign language Raise expectations of deaf children

17. Advice for Professionals Deaf 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 cant sign fluently.

18. Advice for Professionals Deaf Parents I havent seen the deaf parents complain about that, theyre 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.

19. 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

20. Advice for Professionals: Parents with Hard of Hearing Children Respect Our Feelings Listen to Us Give Options & Appropriate Referrals Communicate Better Provide Support Groups

21. 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 its a traumatic thing for the parent. I was like traumatized, because I didnt know what I was headed for in the future…. [Survey 76]

22. 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 childs behavior improve?

23. Advice for Professionals Parents with Children with Disabilities Respect Us and Our Children Be Knowledgeable Tell Us Everything Be Honest and Direct Listen to Us

24. Hmm…nobody ever asked me that before. I can tell you what I didnt like and then maybe you can extrapolate from there. I didnt like being petted on the head and given sort of pat, rote answers to 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.

25. 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 wouldve appreciated that.

26. 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 theyre thinking. And so you end up worrying abut things you dont even have to worry about.

27. Concerns of Families of Color Communication Acceptance Fair Treatment Opportunities

28. Advice for Professionals from Families of Color Develop Positive Relationship with Parents Trust Listen to Us Dont dismiss our concerns Tell us Everything Explain Keep us Informed Use different ways to share information Involve Us Dont Intimidate Us

29. Dont 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…dont try to tell me to leave. I want to be comfortable with who I am leaving my child with, and if I dont feel comfortable, he will not stay with you. Its that simple. Im not going to force him to stay with you, youre a stranger.

30. Common Areas of Concern for Families with Deaf & HH Children Services for their Children Getting Information Resources Communication Decisions Technology Decisions Placement Decisions

31. 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

32. 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).

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

34. 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.