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Gale Rice, Ph.D., CCC-SLP and Susan Lenihan, Ph.D., CED

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1 Gale Rice, Ph.D., CCC-SLP and Susan Lenihan, Ph.D., CED
Children with Hearing Loss and Syndromes Early Hearing Detection & Intervention Conference Gale Rice, Ph.D., CCC-SLP and Susan Lenihan, Ph.D., CED Fontbonne University

2 Scope of Presentation Importance of Topic What is a Syndrome?
Role of Early Interventionists Common Syndromes in Children with Hearing Loss Family Support Assessment, Prevention, Treatment Resources

3 Role of the Early Interventionist
Family Support Assessment Prevention Minimalization of associated speech, language and learning issues Treatment Prognosis caveat

4 Prevalence of Hearing Loss & Syndromes (Picard 2004)
40% of children who are deaf or hard of hearing have additional “concerns” About 1/3 of those concerns (13.6%) are attributable to syndromic causes High number of children with hearing loss of unknown origin (over 50%) makes identification and diagnosis of any additional disability more challenging

5 Most Prevalent Syndromes/Sequences (Boys Town, 2007 and Picard, 2004)
Down Pierre Robin Treacher Collins Goldenhar Stickler Congenital cytomegalo virus* Usher Branchio-oto-renal Pendred CHARGE association Neurofibromatosis type II Mitochondrial disorders Waardenburg

6 Family Support “Over time, most parents rebuild their hopes and dreams for their child, learn to adapt to the circumstances in their lives, and remain steadfast in their concern for and commitment to their child with disabilities. The ways in which professionals understand and respect parent’s’ efforts can significantly contribute to this process.” (Gallagher et al)

7 Factors that may impact the grieving process
Age of identification Degree and nature of the disability Emotional state of the family prior to identification Individual personalities Cultural experience Availability of resources for support

8 The Grief Process -Bader and Robbins, Rosetti, Luterman
Grieving is the transformational process by which people respond and cope with a significant loss in their life. Having a child with a disability is a significant loss of a dream. Grief allows an individual to create and embrace a new dream. Grieving is appropriate, necessary and growthful. Professionals should view grief as a process that serves a positive purpose. Each family will experience the grief process in a unique way, but there are common struggles and states that most families will experience.

9 Stages of Grief Stages Professional’s Role Denial Anxiety Guilt
Assist the parent in identifying inner strengths and external resources Anxiety Guide parents to information and resources Guilt Provide information on etiology and prognosis Depression Empower parents to build personal competence Refer when needed Anger Recognize source of anger

10 Suggestions for Professionals -Gallagher et al
Support parents’ hopes and dreams for their child. Suspend judgment of families and their behavior. Demonstrate sensitivity through openness, flexibility, good listening and respect for differences. Recognize the talents of each member of the family. Increase your knowledge about child development, family systems, risk factors for disabilities and resilience. Serve as a connection to community resources.

11 Suggestions for Professionals
Create a space for parents’ ideas, values and perspectives. Collaborate with colleagues to best meet the needs of the families. Be patient. People need time to find their own personal way through unexpected events. View this time as an opportunity to strengthen trust. Educate other professionals and family members to rethink denial and the grief process.

12 Websites for Family Support
Hemifacial microsomia: Stickler syndrome: Usher syndrome:   Branchio-oto-renal syndrome: CHARGE association Neurofibromatosis type II: Mitrchondrial disorders: Waardenburg syndrome:

13 References on Family Support
Bader, J. & Robbins, B., (2001). Good Grief. Denver: Hear at Home. Batshaw, M. (2001). When your child has a disability. Baltimore: Paul H. Brookes. Early Connections for Infants, Toddlers and Families, Colorado Department of Education (1998). One of the Family. Baltimore: Paul H. Brookes. Edwards, P.A., Pleasandts, H.M., & Franklin, S.H. (1999). A path to follow: Learning to listen to parents. Portsmouth, NH: Heinemann. Fialka, J., & Mikus, K.C. (1999) Do you hear what I hear? Parents and professionals working together for children with special needs. Ann Arbor, MI: Proctor Publications. Gallagher, P., Fialka, J., Rhodes, C., Arceneaux, C. (2002). Working with families: Rethinking denial. Young Exceptional Children, 5(2), Luterman, D., Kurtzer-White, E. & Seewald, R. (1999). The Young Deaf Child. Baltimore: York Press. Roberts, R.N., Rule, S., & Innocenti, M.S. (1998). Strengthening the family-professional partnership in services for young children. Baltimore: Paul H. Brookes. Rosetti, L. (2001). Communication intervention: Birth to three. Albany, NY: Singular, Delmar Publishing.

14 Expression of Syndromes Additional Concerns
Evident & identified at birth Identified much later – expertise of early interventionist critical Hypernasality & nasal emission secondary to velopharyngeal insufficiency

15 Assessment of Associated Speech-Language Features
Formal Assessments Articulation Testing Language Testing Informal Assessments Articulation Voice Resonance Multiple contexts Stimulability Oral – Motor examination Facial grimacing

16 Reasons for Speech Features
Hearing loss Velopharyngeal insufficiency Decreased intra-oral pressure Fistulae Orthodontic issues Compensatory articulatory patterns Speech-Language delays

17 Goals of Prevention To support development of age-appropriate speech, language & cognition To prevent development of maladaptive articulation patterns To monitor hearing

18 Prevention Strategies
Authentic communication opportunities Empower parents as facilitators

19 Bill Martin Jr. / Eric Carle
Brown Bear, What Do You See?

20 Pop! goes the weasel All around the mulberry bush The monkey chased the weasel. The monkey thought 'twas all in fun. Pop! goes the weasel. A penny for a spool of thread, A penny for a needle. That's the way the money goes. Pop! goes the weasel.

21 Speech-Language Therapy Strategies for Resonance & Articulation
Intervention to directly address suspected velopharyngeal insufficiency Short, Frequent Bursts of Therapy Direct Intervention for Errors of Manner and Place of Articulation

22 Purpose of Cleft Palate Craniofacial Anomalies Teams
To assess children with orofacial/craniofacial anomalies from an inter-disciplinary perspective To plan and prioritize treatment for children with orofacial/craniofacial anomalies from an inter-disciplinary perspective

23 Referral Criteria Known cleft or craniofacial anomaly
Hypernasality with or without bifid uvula Nasal emission Bifid uvula with hypernasality and/or cul de sac resonance Nasal regurgitation of food or liquids

24 References Carneol, S.O., Marks, S.M., & Weik, L. (1999). The speech-language pathologist: Key role in the diagnosis of velocardiofacial syndrome. American Journal of Speech-Language Pathology, 8, Dworkin, J.P., Marunick, M.T., & Krouse, J.H. (2004). Velopharyngeal dysfunction: Speech characteristics, variable etiologies, evaluation techniques, and differential treatments. Language, Speech, and Hearing Services in Schools, 35, Golding-Kushner, K.J. (2001). Therapy techniques for cleft palate speech and related disorders. Canada: Singular. Kahn, A. (2000). Craniofacial anomalies: A beginner’s guide for speech- language pathologists. San Diego, CA: Singular. Kummer, A.W. (2001). Cleft palate and craniofacial anomalies: Effects on speech and resonance. Canada: Singular. Perkins, W.H., & Northern, J.L. (Eds.). (1986). Current methods of assessing and treating children with cleft palates. Seminars in Speech and Language, 7.

25 Resources for Syndromes
Peterson-Falzone, S.J., Hardin-Jones, M.A., & Karnell, M.P. (2001). Cleft palate speech. (3rd ed.). St. Louis, MO: Mosby. Picard, M. (2004). Children with permanent hearing loss and associated disabilities: Revisiting current epidemiological data and causes of deafness. The Volta Review, 104 (4), Shprintzen, R.J. (2001). Syndrome Identification for Audiologists: An Illustrated Pocketguide. San Diego, CA: Singular Publishing Group. Shprintzen, R.J. (2000). Syndrome Identification for Speech-Language Pathologists: An Illustrated Pocketguide. San Diego, CA: Singular Publishing Group. Truax, R., & Whitesell, K. (2004). Literacy learning: Meeting the needs of children who are deaf or hard of hearing with additional special needs. The Volta Review, 104 (4),

26 Websites on General Syndrome Information
American Speech-Language-Hearing Association: Boys Town National Research Hospital: FACES: The National Craniofacial Association: American Cleft Palate Association National Organization for Rare Disorders (NORD): Type in specific syndrome

27 Syndrome Specific Websites
Hemifacial microsomia/Goldenhar:   Stickler syndrome: Usher syndrome:   Branchio-oto-renal syndrome:   Pendred syndrome:

28 Syndrome Specific Websites
CHARGE: Neurofibromatosis type II:   Mitochondrial disorders:   Waardenburg syndrome:

29 Gale Rice, Ph. D. , CCC-SLP Fontbonne University Susan Lenihan, Ph. D
Gale Rice, Ph.D., CCC-SLP Fontbonne University Susan Lenihan, Ph.D., CED Fontbonne University

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