Presentation on theme: "Gale Rice, Ph.D., CCC-SLP and Susan Lenihan, Ph.D., CED"— Presentation transcript:
1Gale Rice, Ph.D., CCC-SLP and Susan Lenihan, Ph.D., CED Children with Hearing Loss and Syndromes Early Hearing Detection & Intervention ConferenceGale Rice, Ph.D., CCC-SLP and Susan Lenihan, Ph.D., CEDFontbonne University
2Scope of Presentation Importance of Topic What is a Syndrome? Role of Early InterventionistsCommon Syndromes in Children with Hearing LossFamily SupportAssessment, Prevention, TreatmentResources
3Role of the Early Interventionist Family SupportAssessmentPreventionMinimalization of associated speech, language and learning issuesTreatmentPrognosis caveat
4Prevalence 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 causesHigh number of children with hearing loss of unknown origin (over 50%) makes identification and diagnosis of any additional disability more challenging
5Most Prevalent Syndromes/Sequences (Boys Town, 2007 and Picard, 2004) DownPierre RobinTreacher CollinsGoldenharSticklerCongenital cytomegalo virus*UsherBranchio-oto-renalPendredCHARGE associationNeurofibromatosis type IIMitochondrial disordersWaardenburg
6Family 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)
7Factors that may impact the grieving process Age of identificationDegree and nature of the disabilityEmotional state of the family prior to identificationIndividual personalitiesCultural experienceAvailability of resources for support
8The 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.
9Stages of Grief Stages Professional’s Role Denial Anxiety Guilt Assist the parent in identifying inner strengths and external resourcesAnxietyGuide parents to information and resourcesGuiltProvide information on etiology and prognosisDepressionEmpower parents to build personal competenceRefer when neededAngerRecognize source of anger
10Suggestions 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.
11Suggestions 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.
12Websites for Family Support Hemifacial microsomia:Stickler syndrome:Usher syndrome:Branchio-oto-renal syndrome:CHARGE associationNeurofibromatosis type II:Mitrchondrial disorders:Waardenburg syndrome:
13References 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.
14Expression of Syndromes Additional Concerns Evident & identified at birthIdentified much later – expertise of early interventionist criticalHypernasality & nasal emission secondary to velopharyngeal insufficiency
15Assessment of Associated Speech-Language Features Formal AssessmentsArticulation TestingLanguage TestingInformal AssessmentsArticulationVoiceResonanceMultiple contextsStimulabilityOral – Motor examinationFacial grimacing
16Reasons for Speech Features Hearing lossVelopharyngeal insufficiencyDecreased intra-oral pressureFistulaeOrthodontic issuesCompensatory articulatory patternsSpeech-Language delays
17Goals of PreventionTo support development of age-appropriate speech, language & cognitionTo prevent development of maladaptive articulation patternsTo monitor hearing
18Prevention Strategies Authentic communication opportunitiesEmpower parents as facilitators
19Bill Martin Jr. / Eric Carle Brown Bear,What Do You See?
20Pop! goes the weaselAll 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.
21Speech-Language Therapy Strategies for Resonance & Articulation Intervention to directly address suspected velopharyngeal insufficiencyShort, Frequent Bursts of TherapyDirect Intervention for Errors of Manner and Place of Articulation
22Purpose of Cleft Palate Craniofacial Anomalies Teams To assess children with orofacial/craniofacial anomalies from an inter-disciplinary perspectiveTo plan and prioritize treatment for children with orofacial/craniofacial anomalies from an inter-disciplinary perspective
23Referral Criteria Known cleft or craniofacial anomaly Hypernasality with or without bifid uvulaNasal emissionBifid uvula with hypernasality and/or cul de sac resonanceNasal regurgitation of food or liquids
24ReferencesCarneol, 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.
25Resources 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),
26Websites on General Syndrome Information American Speech-Language-Hearing Association:Boys Town National Research Hospital:FACES: The National Craniofacial Association:American Cleft Palate AssociationNational Organization for Rare Disorders (NORD):Type in specific syndrome