Growing up with Additional Disabled Child: The Life Story of a Mom


Abstract views: 157 / PDF downloads: 115

Authors

DOI:

https://doi.org/10.52380/ijcer.2023.10.3.423

Keywords:

Additional disability, Child, Mom, Life history, Narrative research

Abstract

The aim of this study, which was carried out according to the life story/narrative research design, which is one of the qualitative research methods, is to examine the life story of a mother living with a child with an additional disability. In this context, a 5-year-old child with deficiencies such as hearing loss, autism and ADHD and his mother were included in the study. The research data consists of semi-structured interviews, observations, and document analysis. The collected data were analyzed with the inductive analysis method. As a result of the analysis, four main themes and ten sub-themes were reached. It was found that the mother had problems in the diagnosis process of the child, in the use of hearing aids, placement in appropriate educational environments, familial support and social support services. Based on these problems, it is necessary to make updates in planning legal regulations and related legislation.

 

Author Biography

Emrah Marul, Recep Tayyip Erdoğan University

Recep Tayyip Erdoğan University

References

Akçamete, G., (Ed.). (2011). Özel Gereksinimi Olan Küçük Çocuklar. (1. Basım). Ankara: Nobel Yayıncılık

Allen, M. C., Nikolopoulos, T. P., & O'Donoghue, G. M. (1998). Speech intelligibility in children after cochlear implantation. The American journal of otology, 19(6), 742-746. https://pubmed.ncbi.nlm.nih.gov/9831147/

Altuğ-Özsoy, S., Özkahraman, Ş., & Çallı, F. (2006). Zihinsel engelli çocuk sahibi ailelerin yaşadıkları güçlüklerin incelenmesi [Review of hardships undergone by families with mentally retarded children]. Sosyal Politika Çalışmaları Dergisi, 9(9), 69-77. https://dergipark.org.tr/tr/pub/spcd/issue/21102/227266

Archbold, S. M., Lutman, M. E., Gregory, S., O'Neill, C., & Nikolopoulos, T. P. (2002). Parents and their deaf child: their perceptions three years after cochlear implantation. Deafness & Education International, 4(1), 12-40. https://doi.org/10.1179/146431502790560962 DOI: https://doi.org/10.1179/146431502790560962

Bahçıvanoğlu-Yazıcı, A., & Akçin, N. (2014). Çoklu yetersizliği olan çocukların annelerinin çocuklarının gelişimlerine ilişkin görüşlerinin betimlenmesi [Describing mother's opinions about development process of their children with multiple disability]. Ahi Evran Üniversitesi Kırşehir Eğitim Fakültesi Dergisi (KEFAD), 15(2), 335-356. https://dergipark.org.tr/tr/download/article-file/1490009

Barnett, W. S., & Boyce, G. C. (1995). Effects of children with Down syndrome on parents' activities. American Journal Of Mental Retardation: AJMR, 100(2), 115-127. https://eric.ed.gov/?id=EJ510104

Bogdan, R., & Biklen, S. K. (1997). Qualitative research for education. (third ed.) Boston, MA: Allyn & Bacon.

Bruce, S. M. (2011). Severe and multiple disabilities. In Kauffman, J.M. & Hallahan, D.P. (Ed.) Handbook of special education (pp. 291-303). New York and London: Routledge

Cavkaytar, A. (2008). Perspectives of Turkish Mothers on Having a Child with Developmental Disabilities. International Journal of Special Education, 23(2), 101-109. https://hdl.handle.net/11421/10776

Clandinin, D. J., & Connelly, F. M. (2000). Narrative inquiry: Experience and story in qualitative research. San Francisco: Jossey-Bass

Clandinin, D. J. (2006). Narrative Inquiry: A Methodology for Studying Lived Experience. Research Studies in Music Education, 27(1), 44–54. https://doi.org/10.1177/1321103X060270010301 DOI: https://doi.org/10.1177/1321103X060270010301

Clark, R. E., & Drake, R. E. (1994). Expenditures of time and money by families of people with severe mental illness and substance use disorders. Community Mental Health Journal, 30, 145-163. DOI: https://doi.org/10.1007/BF02188626

Creswell, J. W. (2012). Educational research: Planning, conducting, and evaluating quantitative and qualitative reseaarch (4th ed.). USA: Sage

Davis, N. O., & Carter, A. S. (2008). Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: Associations with child characteristics. Journal of autism and developmental disorders, 38, 1278-1291. https://doi.org/10.1007/s10803-007-0512-z DOI: https://doi.org/10.1007/s10803-007-0512-z

Eldeniz Çetin, M. (2013). Ağır ve çoklu yetersizliği olan bireylerin tercihlerinin değerlendirilmesi ve seçim yapma becerisinin öğretimi [Preference assessment in individuals with profound and multiple disabilities and teaching choice-making]. Eğitim Bilimleri Enstitüsü, Ankara.

Ersoy, A., & Bozkurt, M. (2017). Understanding an elementary school teachers’ journey of using technology in the classroom from sand table to ınteractive whiteboard. International Electronic Journal of Elementary Education, 8(1), 1–20. Retrieved from https://iejee.com/index.php/IEJEE/article/view/94

Faraone, S. V., Biederman, J., Morley, C. P., & Spencer, T. J. (2008). Effect of stimulants on height and weight: a review of the literature. Journal of the American Academy of Child & Adolescent Psychiatry, 47(9), 994-1009. https://doi.org/10.1097/CHI.ObO13e31817eOea7 DOI: https://doi.org/10.1097/CHI.0b013e31817e0ea7

Farrell, A. F., & Krahn, G. L. (2014). Family life goes on: Disability in contemporary families. Family relations, 63(1), 1-6. https://doi.org/10.1111/fare.12053. DOI: https://doi.org/10.1111/fare.12053

Gallaudet Research Institute. (2003). Regional and national summary report of data from the 2002-2003 annual survey of deaf and hard of hearing children & youth. Washington, DC: GRI, Gallaudet University.

Genç, A. G., Ertürk, B. B. & Belgin, E. (2005). Newborn hearing screening: From the beginning to the present. Journal of Child Health and Diseases, 48,109-118. http://www.cshd.org.tr/uploads/pdf_CSH_137.pdf

Giangreco, M.F. (2006). Foundational concepts and practices for educating students with severe disabilities. In M.E. Snell & F. Brown (Eds.). Instruction of students with severe disabilities (6th ed., pp. 1-27). Upper Saddle River, NJ: Pearson Education/Prentice-Hall.

Glesne, C. (2013). Nitel araştırmaya giriş. A. Ersoy ve P. Yalçınoğlu (Çev. Edt.). Ankara: Anı Yayıncılık

Graungaard, A. H., & Skov, L. (2007). Why do we need a diagnosis? A qualitative study of parents’ experiences, coping and needs, when the newborn child is severely disabled. Child: Care, Health and Development, 33(3), 296-307. https://doi.org/10.1111/j.1365-2214.2006.00666.x DOI: https://doi.org/10.1111/j.1365-2214.2006.00666.x

Gray, D. E., & Holden, W. J. (1992). Psycho-social well-being among the parents of children with autism. Australia and New Zealand Journal of Developmental Disabilities, 18(2), 83-93. https://doi.org/10.1080/07263869200034841 DOI: https://doi.org/10.1080/07263869200034841

Güler, A., Halıcıoğlu, M. B. ve Taşğın, S. (2015), Sosyal bilimlerde nitel araştırma (2. Baskı). Ankara: Sözkesen Matbaacılık

Hallahan, D. P., Kauffman, J. M., & Pullen, P.C. (2018). Exceptional learners: an introduction to special education (14th ed.). Pearson Education, Inc

Harrison, M., Roush, J. & Wallace, J. (2003). Trends in age of identification and intervention in infants with hearing loss. Ear and Hearing Issue, 24(1),89-95. https://doi.org/10.1097/01.AUD.0000051749.40991.1F DOI: https://doi.org/10.1097/01.AUD.0000051749.40991.1F

Hill, M. G. (2015). Aklımın aklı: Psikoloji [Psychsmart] (2. Baskıdan Çev. Mithat Durak, Emre Şenol Durak, Ufuk Kocatepe). Ankara: Nobel.

Hintermair, M. (2000). Children who are hearing impaired with additional disabilities and related aspects of parental stress. Exceptional children, 66(3), 327-332. https://doi.org/10.1177/001440290006600304 DOI: https://doi.org/10.1177/001440290006600304

İçmeli, C., Ataoğlu, A., Canan, F. & Özçetin, A. (2008). Zihinsel özürlü çocukları olan ebeveynler ile sağlıklı çocuklara sahip ebeveynlerin çocuk yetiştirme tutumlarının karşılaştırılması. Düzce Medical Journal, 10 (3),21-28.Retrieved from https://dergipark.org.tr/en/pub/dtfd/issue/48265/610990

İnce, M., & Yıkmış, A. (2021). Opinions and recommendations of academics training special education teachers about applicability of integration in Turkey. International Education Studies, 14(11), 54-74. https://doi.org/10.5539/ies.v14n11p54 DOI: https://doi.org/10.5539/ies.v14n11p54

İnce, M., Kösretaş, B. & Ataman, A.S. (2022, Kasım). Özel gereksinimli çocuğu olan bir anneyi anlamak: Bir anlatı araştırması [Sözlü Bildiri] “Büyük Zafer’in 100. Yılı Anısına” 4. Uluslararası Türk Dünyası Eğitim Bilimleri ve Sosyal Bilimler Kongresi, Antalya. https://drive.google.com/file/d/18qfOfIPxIy7qoxGDDovtAJkXYtbNIedo/view

Karadağ, G. (2009). Engelli çocuğa sahip annelerin yaşadıkları güçlükler ile aileden algıladıkları sosyal destek ve umutsuzluk düzeyleri [Hardships undergone by mothers with handicapped children, hopelessness and social support from family]. TAF Preventive Medicine Bulletin, 8(4), 315-322. https://search.trdizin.gov.tr/tr/yayin/detay/96764/

Kearney, P. M., & Griffin, T. (2001). Between joy and sorrow: Being a parent of a child with developmental disability. Journal of Advanced Nursing, 34(5), 582–599. http://dx.doi.org/10.1046/j.1365-2648.2001.01787.x DOI: https://doi.org/10.1046/j.1365-2648.2001.01787.x

Kemaloğlu, Y.K. (2015). Yenidoğan işitme taramaları. E. Belgin ve A. S. Şahlı (Ed.), Temel odyoloji içinde (s.191-217). Ankara: Güneş Tıp Kitabevleri.

Kizir, M., & Çifci Tekinarslan, İ. (2018). Ağır ve çoklu yetersizliği (AÇYE) olan çocuk annelerinin yaşadıkları sorunların ve sorunlarla baş etme yöntemlerinin belirlenmesi. Ankara Üniversitesi Eğitim Bilimleri Fakültesi Özel Eğitim Dergisi, 19(2), 233-256. https://doi:10.21565/ozelegitimdergisi.321683 DOI: https://doi.org/10.21565/ozelegitimdergisi.321683

Köksal, G., & Kabasakal, Z. (2012). Zihinsel engelli çocukları olan ebeveynlerin yaşamlarında algıladıkları stresi yordayan faktörlerin incelenmesi. Dokuz Eylül Üniversitesi Buca Eğitim Fakültesi Dergisi, (32), 71-91. https://dergipark.org.tr/tr/pub/deubefd/issue/25119/265246

Kurt, A. S., Tekin, A., Koçak, V., Özpulat, Ö., & Önat, H. (2008). Zihinsel engelli çocuğa sahip anne babaların karşılaştıkları güçlükler [Living difficulties for parents of children with mental disability]. Türkiye Klinikleri Journal of Pediatrics, 17(3), 158-163. https://www.turkiyeklinikleri.com/article/en-zihinsel-engelli-cocuga-sahip-anne-babalarin-karsilastiklari-guclukler-52736.html

Lederberg, A. R., & Golbach, T. (2002). Parenting stress and social support in hearing mothers of deaf and hearing children: A longitudinal study. Journal of deaf studies and deaf education, 7(4), 330-345. https://doi.org/10.1093/deafed/7.4.330 DOI: https://doi.org/10.1093/deafed/7.4.330

Lopez-Wagner, M., Hoffman, C., D., Sweeney, D., P., Hodge, D., & Gilliam, J. (2008). "Sleep problems of Parents of Typically Developing Children and Parents of Children with Autism", The Journal Of Genetic Psychology, 169 (3): 245-260. https://doi.org/10.3200/GNTP.169.3.245-260 DOI: https://doi.org/10.3200/GNTP.169.3.245-260

Luijkx, J., Van der Putten, A. A. J., & Vlaskamp, C. (2017). Time use of parents raising children with severe or profound intellectual and multiple disabilities. http://doi:10.1111/cch.12446 DOI: https://doi.org/10.1111/cch.12446

McIntyre, L., Kraemer, B. R., Blacher, J., & Simmerman, S. (2004). Quality of life for young adults with severe intellectual disability: Mothers' thoughts and reflections. Journal of Intellectual and Developmental Disability, 29(2), 131-146. https://eric.ed.gov/?id=EJ681075 DOI: https://doi.org/10.1080/13668250410001709485

Mencap. (2001). No ordinary life: The support needs of families caring for children and adults with profound and multiple disabilities. London: Royal Society for Mentally Handicapped Children and Adults.

Moeller, M. P., Hoover, B., Peterson, B., & Stelmachowicz, P. (2009). Consistency of hearing aid use in infants with early-identified hearing loss. American journal of audiology, 18(1), 14-23. https://doi.org/10.1044/1059-0889(2008/08-0010) DOI: https://doi.org/10.1044/1059-0889(2008/08-0010)

Nakken, H., & Vlaskamp, C. (2007). A need for a taxonomy for profound intellectual and multiple disabilities. Journal of Policy and Practice in Intellectual Disabilities, 4, 83–87. https://doi.org/10.1111/j.1741-1130.2007.00104.x DOI: https://doi.org/10.1111/j.1741-1130.2007.00104.x

O'Shea, D. J., & Hammitte, D. J. (2001). Families and teachers of individuals with disabilities: Collaborative orientations and responsive practices. Allyn & Bacon.

Özşenol, F., Işıkhan, V., ve Ünay, B. (2003). "Özürlü Çocuğa Sahip Ailelerin Aile İşlevlerinin Değerlendirilmesi", Gülhane Tıp Dergisi, 45 (2): 156-164. https://search.trdizin.gov.tr/tr/yayin/detay/20860

Redmond, B., & Richardson, V. (2003). Just getting on with it: Exploring the service needs of mothers who care for young children with severe/profound and life‐threatening intellectual disability. Journal of Applied Research in Intellectual Disabilities, 16(3), 205-218. https://doi.org/10.1046/j.1468-3148.2003.00165.x DOI: https://doi.org/10.1046/j.1468-3148.2003.00165.x

Sardohan-Yıldırım, E. S., & Akçamete, G. (2014). Çoklu yetersizliği olan çocuğa sahip annelerin erken çocukluk özel eğitimi hizmetleri sürecinde karşılaştıkları güçlüklerin belirlenmesi. Cumhuriyet Uluslararası Eğitim Dergisi, 3(1), 74-89. https://doi.org/10.30703/cije.321336 DOI: https://doi.org/10.30703/cije.321336

Sardohan-Yıldırım, A.E., & Vezne, R. (2022). A Family Education Intervention for Parents Having Children with Multiple Disabilities during COVID-19. International Journal of Contemporary Educational Research, 9(1), 179-190. https://doi.org/10.33200/ijcer.1004241 DOI: https://doi.org/10.33200/ijcer.1004241

Seltzer, M. M., Greenberg, J. S., Floyd, F. J., Pettee, Y., & Hong, J. (2001). Life course impacts of parenting a child with a disability. American Journal On Mental Retardation, 106(3), 265-286. https://10.1352/0895-8017(2001)106<0265:LCIOPA>2.0.CO;2 DOI: https://doi.org/10.1352/0895-8017(2001)106<0265:LCIOPA>2.0.CO;2

Seggie, F. N. ve Bayyurt, Y. (2015). Nitel Araştırma Yöntem, Teknik, Analiz ve Yaklaşımları. Ankara: Anı Yayıncılık.

Sloper, P., & Turner, S. (1992). Service needs of families of children with severe physical disability. Child: Care, Health and Development, 18(5), 259-282. https://doi.org/10.1111/j.1365-2214.1992.tb00359.x DOI: https://doi.org/10.1111/j.1365-2214.1992.tb00359.x

Şafak, P. (2013). Ağır ve çoklu yetersizliği olan çocukların eğitimi [Education of children with severe and multiple disabilities] (2. baskı). Ankara: Vize Yayıncılık.

Şen, E. (2004). Engelli çocuğu olan ailelerin yaşadığı güçlükler [Difficulties of families with disabled child] (Unpublished master’s thesis, Mersin University, Institute of Health Sciences, Mersin, Turkey). Retrieved from http://tez.yok.gov.tr/UlusalTezMerkezi. (Thesis Number 156345)

Tadema, A. C., & Vlaskamp, C. (2010). The time and effort in taking care for children with profound intellectual and multiple disabilities: A study on care load and support. British Journal of Learning Disabilities, 38, 41–48. https://doi.org/10.1111/j.1468-3156.2009.00561.x DOI: https://doi.org/10.1111/j.1468-3156.2009.00561.x

Tura, G. (2022). The Effect of Psychoeducation Program Based on Structural Family System Therapy on Family Functionality in Families of a Child Diagnosed with Attention Deficit Hyperactivity Disorder. International Journal of Contemporary Educational Research, 9(1), 164-178. https://doi.org/10.33200/ijcer.1026579 DOI: https://doi.org/10.33200/ijcer.1026579

Van Timmeren, E. A., Van der Putten, A. A. J., Schrojenstein Lantman-de Valk, H. M. J., Schans, C. P., & Waninge, A. (2016). Prevalence of reported physical health problems in people with severe or profound intellectual and motor disabilities: A cross-sectional study of medical records and care plans. Journal of Intellectual Disability Research, 60, 1109–1118. http://doi:10.1111/jir.12298 DOI: https://doi.org/10.1111/jir.12298

Wake, M., & Carew, P. (2016). Science, not philosophy, will help deaf and hard-of-hearing children reach their potential. Pediatrics, 137(1), e20153443. https://doi.org/10.1542/peds. 2015-3443. DOI: https://doi.org/10.1542/peds.2015-3443

Wang, P., & Michaels, C. A. (2010). Chinese families of children with severe disabilities: Family needs and available support. Research and Practice for Persons with Severe Disabilities, 34(2), 21-32. https://doi.org/10.2511/rpsd.34.2.21 DOI: https://doi.org/10.2511/rpsd.34.2.21

Westling, D., & Fox, L. (2009). Teaching students with severe disabilities (3rd ed.). Upper Saddle River, NJ: Merrill.

Yıkmış, A., & Özbey, F. Y. (2009). Otistik çocuğa sahip annelerin çocuklarının devam ettiği rehabilitasyon merkezlerinden beklentilerinin ve önerilerinin belirlenmesi [Define the expectations of mothers whose autistic children attends to a rehabilitation center]. International Online Journal of Educational Sciences, 1(1), 124-153. https://www.ajindex.com/dosyalar/makale/acarindex-1423904513.pdf

Yıldırım, A., & Şimşek, H. (2021). Sosyal Bilimlerde Nitel Araştırma Yöntemleri (12 baskı). Seçkin. Ankara

Zaidman-Zait, A. (2007). Parenting a child with a cochlear implant: A critical incident study. Journal of Deaf Studies and Deaf Education, 12(2), 221-241. https://doi.org/10.1093/deafed/enl032 DOI: https://doi.org/10.1093/deafed/enl032

Downloads

Published

27.09.2023

How to Cite

Marul, E., & Yıldırım, H. H. (2023). Growing up with Additional Disabled Child: The Life Story of a Mom. International Journal of Contemporary Educational Research, 10(3), 569–580. https://doi.org/10.52380/ijcer.2023.10.3.423

Issue

Section

Articles