PA NT APP lA IN TH IR T I NWI R b u ann Muirh ad THESIS SUBMJTT DIN PARTIAL FULFILLMENT OF THE REQUIREMENT FOR THE DEGREE OF MASTER OF EDUCATION m THE FACULTY OF GRADUATE STUDIES (Counselling Program) THE UNIVERSITY OF NORTHERN BRITISH COLUMBIA December 1999 All rights reserved. This work may not be reproduced in whole or in part, by photocopy or other means, without permission of the author. WN ar nt Appr iati n 2 RAT hi pr ial tudy i d n fr m a ailing i w n wn ndr m n tru ti ni t p r p cti and ar nting hildr n with regard d as d minant ultural p rtra al or n tructi n syndrome, and par nting childr n with wn negatively skew d-ID cu n id r d appr ciati in parenting a child with D wn wn ndr m ar Aft r r vi wing th developm nt f the bi m dical , hi t ri al , and cultural .D nn nth wh r th f di c ur ab ut wn ndr m - c n tructi n I think ar exp riences involv d ndr me fr m birth t adulth od. With the stead increa e and sophi tication in genetic testing pro pective parents of children with Down yndrom now face critical decisions r garding the life of their fetus and their future a parents. In the absence f other, more appreciative views, prospective parents and health care professional draw on dominantly negative views to make momentous decisions. For this study, nine parents were interviewed who had experienced life with a child with Down syndrome from birth through to adulthood. Analysis of the data produced three themes. The first theme does not address pecific appreciative experiences but instead looks at a consistent process of reconstructing meanings that appeared to occur in order for each parent to first accept their child with Down syndrome. ach parent appeared to go through an acceptance proces each in his/her way and in some respect said "yes" to this child who was different from what they had expected. The second theme looks at experience parent appr ciated regarding their child Par nt Appreciati n with Down yndrome a at ach r. Par nt r p at dly shar d h w th them so much ab ut th m el and what experienc lifl and th w rld. children taught h final th m 1 k at car giving par nt appr ciat dab ut that r le in 1 d in rai ing th ir child with Down yndrome. Thi the i e amine challeng wn ndr m thr ugh an ap reciativ len and som of the traditi nal imagining ab ut what it might b lik t par nt a child with Down yndrom . Thi tud i ab ut haring new meaning and images about Down syndrome and of parenting a child with D wn syndrome fr m birth to adulthood and th importance of balanced informati n being hared in the encounters between provider of genetic information and prospective parents. Par nt Appr ciati n 4 Dedi ati n Thi re arch i d dicat d t m br th r, Mi ha 1 hawn had the chanc to xp rienc Jifl with a r th r with ix year and had apr wn und and p w rful impa t n m life. ill. I appr ciat having ndr m . H liv d fl r fl rty- Par nt Appr ciati n T BL OF 0 T T AB TRA T . . 2 DEDI ATIO . 4 TE T . 5 A KNOWLEDGME T . 8 TABLEOF 0 CHAPTER 1: I TROD TIO The Research Problem Research Que tion Impetu for the tudy . Personal Stance Per onal Experiences - Family Personal Experiences- Career . Significance of the Study Organization of the Chapters . CHAPTER 2: liTERATURE REVIEW Social Constructionist Inquiry Appreciative Inquiry . Construction of Disability. The Biological Construction of Disability The Historical Construction of Disability The Cultural Construction of Disability Construction of Down Syndrome The Biological Construction of Down Syndrome The Historical Construction of Down Syndrome The Cultural Construction of Down Syndrome Role of Long Term Caregiver . An Appreciative Lens . Providing Balanced Information Reasons for Research uestion . 9 10 10 10 11 12 12 13 14 . 15 15 18 20 20 21 23 27 27 28 30 36 38 41 46 Par nt Appr iati n THOD RAPT R 3: METHODOLOGY AND Meth d I gy . d h r ti al nd rpinning fl r ppr ach M th d fth am at a ata naly i . p nda ility and r dibility Tru tw rthin thi al n id rati n . 48 48 49 52 53 55 58 nfirmabilit 0 61 CHAPTER 4: DI Pr ntati n f th pen nc Theme Awar n and Ace ptanc - A R c n tructi n Pr c A ompan n. Awarene Acceptanc of the Proces Acceptance - Uniquen Child a Teacher earning on a Deeper Le el Acceptance of Other . Acceptance of Self Distinguishing Characteristics . Forgiving and Loving . Stopping to Smell the Roses . Determination and Pride in Accomplishments Family Dynamics Caregiver Appreciation Caregiver Struggles Appreciating the Care giving Role as a Purpose in Life and for Companionship Caregivers as Advocates Children's Successes . 62 2 63 63 CHAPTER 5 . . 98 Summary of the Study Conclusions of the Study Limitations of the Study. Implications for Further Research. Implications for Practice Implications for ducation 64 65 68 70 74 75 76 80 81 81 82 83 85 86 88 90 92 95 98 . 102 . 104 . 105 . 107 . 11 0 Par nt Appre iati n . 112 APPENDIX A. M dical In£ rmation n APPENDIX B. Definition wn yndr m f Mental R tardati nand APPENDIX Amniocente i V . 122 . 123 ev I pm ntal and Triple Mark r cr rung i ability . 124 . 125 . 127 . 128 APPENDIXD Dimensions of the ample .130 APPENDIXE. Letter of Introduction . Consent Form . . 132 APPENDIXF. Interview Guide. . 135 . 131 . 133 . 134 . 136 7 Par nt Appr ciati n NT A KN W I wi h to thank fir t and cl r m e fri nd forth ir r a uring n long proc of r arch, anal urag m nt and unqu ti own upp rt during thi rv and writing. M m th rand father d ac r cogniti n fl r th y exhibit d uch 1 brother with m 1 ing family and t m · hu an ptan and appr ndrome that th r lati n hip th iati n p cial r Micha 1, my fl rrn d with him rv d as an in piration for thi the i . I wi h to gratefully thank m up rv1 consi tent support, hi unfailing e p rti As well, I wi h to expre r, len chmidt, fl r hi gentle yet about a wid range f topics, and his resp ct. my inc re appr ciation for my other committee members. I thank Tom Strong for his curiosity, his insight, hi prompt, constructive feedback, his editing ability and the sharing of his resourcefulne s in many areas. I appreciate Martha MacLeod for her exuberance as she energetically came on to my committee at the last minute sharing her knowledge and expertise when one of my committee members left the university midstream. She painstakingly took the time to enthusiastically contribute a myriad of worthwhile revisions. Finally, I would especially like to acknowledge and thank the people who participated in this study . Without their willingnes to share conversation with me I would not have been able to complete this thesis and share with others the appreciation these parents have for their children with Down syndrome. ar nt Appr ci tion 9 hapt r 1 Intr du ti n D wn ndr m i n f the m found in human and ha b c m n depiction or con tructi n f fth m w genetic variati n of human ki d. vrn t fr qu ntl t ccurnng hr m mal an mali ar h d and di cu ed ntr r d minant W t m hi t rical and cultural ndr m ha p rtra mething that h uld b d it a a ri u di ability, ither pr vent d r cured. Within the e dominant con truction , the birth fa child with wn s ndr me ha commonly been viewed a a traged and gr ted with fl eling of 1 and di appointment. The e constructions of Down syndrome upport the genetic te ting program for Down syndrome that currently continue to expand and devel p ( Blumberg, 1994; lkins & Brown, 1995; Glover & Glover, 1996; Williams, 1995). As prenatal diagnosis becomes more common, an increasing number of prospective parent are faced with difficult decisions. Presently, many fetuses that test positive for Down syndrome are aborted. This situation seems reasonable considering the dominant view of Down syndrome is one of ongoing burden. At the same time as genetic testing is becoming more prevalent, increasing numbers of people are starting to question and challenge the current dominant constructions of Down syndrome. More people are talking about ways in which people with Down syndrome are of value to society and how they enrich people' lives. With this study I want t continue to open spaces for more appreciative voice to b heard in the cultural dialogues on own syndrome and parenting a child with Down syndrome. I ar nt Appr iati n want to enrich th lit ratur that i n w a aila 1 and ugg t n w p par nting a child with ndr m . wn e pand the information ba dding a pr ar nt h Dr will furth r cti iati a aila 1 D r h alth pr iliti 1 pr fe i nal ri r t th diffi ult, compl har n par nts must mak in ur g n ticall ad an d w rld. uring thi pr -birth r flecti n time on wh th r t ab rt r k ndr m pa tu with wn parent have balanced inti rmati n with whi h t rna it i im rtant that in.D rm d deci i n . The Research Problem The purpose of thi inquiry i to xpl r e penence primary parent caregivers appreciate about living with a child with Down yndrom from birth to adulthood and to add to the traditional understandings of parenting a child with Down syndrome. Research Question What experiences are appreciated by primary parent caregivers living with a child with Down syndrome from birth to adulthood? Impetus for Study The impetus for this study originates from my stance as a person and my belief that as people we socially construct our meanings together. I think that it is possible to construct new and different meanings in dialogue with others. As well, my personal experiences within my family and in my career have contributed to my passion for this topic. ar nt Appr iati n 11 Personal Stance I com fr m a ial indi iduali m and h w w tum t our mearung . na it fl u m t intere ting fl r me b au ial n tructi ni t inquiry i ial appr ach aluing r lati n hip ver ti n tru ti ach th r mo t rg n 1 94 a fl r runn r in ocial n in languag t c n truct and har n tructi ni t th ught di cu the e ch wing indi iduali t traditi nand th gr wmg upp rt t ward g1 mg alu t relationship o er i lati n. e tat that pl in r lati nship m t ward c llective agreements on what i real , rati nal and right, and articulat the e agreement in their form of language. erg n 1994 tat that regardl of our ociety r culture, we develop working languages for carrying out our collecti e live . The working language and collective agreements in We tern society regarding parenting children with Down syndrome have traditionally focused on pathology. Consistent with the social con tructionist per pective, Cooperrider and Srivastva (1987) have developed a theory of organizing and a method for changing social systems labeled "appreciative inquiry' . I intend to use a basic process of appreciative inquiry in this thesis -to begin with a grounded observation of the "best of what is"( Cooperrider, 1998, p.12) to expand on the current working language and collective agreements about parenting a child with Down syndrome. This decision to take an appreciative stance, to focus on the "best of what is" comes from my life-long experiences of living with a brother with Down syndrome. ar nt Appr i ti n amily Personal Th dri ing fl r wa b rn with of experi nc par nt 12 1 m e p n n with m f 1 50 . M lifl h t d 'th li ing and w rking with m cifi all wh wer at th fl r fr nt f m r th r n nc The openly har d th ir 1 and ap r ciati n a My car gi ing faced chall nging, w 11 as j frustrating and fri ght ning ld t br th r, wh n full fa wid van ty ndr m in Jul wn c nn b hind thi th fill d and r warding xp ri nee . ut p ri ncing lifl with a n with Down yndrom and w r th indi idual that mo t dir ctly c ntribut d t my current con truction of Down ndrom . Furth rm r a a ibling, I had many of my own experiences that I appreciated. Living with thi appreciative dialogue within my family and with the knowledge that there was a lack of appreciative voices in formal research, I chose to follow thi passion and engage other parents ' voices in dialogues regarding appreciation. Personal Experiences- Career Another driving force behind my wanting to do this study originates from my work as a teacher and counselor and working with people who have been labeled " mentally challenged" or "developmentally disabled". These labels are often focused on how much extra funding is provided for a child within the school system and so serve legitimate purposes. However, these labels focus specifically on maladaption and inadequacies. Segal (1986) uses the words ofNorman Gamezy, a University of Minnesota psychologist, to emphasize the common negativity of the coun elling professions, " We have directed our energies to study maladaption and incompetence. ar nt Appr ciati n ur m ntal h alth practiti n r and r and training in (p.9). Thi appli d to p ing d ianc p tudy rna facilitat di pl with wn h path 1 gy , an w a ne u 1 n t, inv tment d ar h r ar predi 1 r th n new r di fi r nt ap r ach 1 k" t label ndr m . Significance of the Study Per n with D wn ndr m h hi tory of people with m ntal handicap Age fr m Anci nt to pre ent day practice i full of i id ace unt reec f oppr thr ugh th Middle i n. h m aning that have been con truct d o er th la t century ab ut D wn syndrome , and the wid pread use of genetic testing, ha mo ed u a a oci ty to where there appear to be a determination to prevent this " condition . The importance of this study rests in my fear that the increase in genetic testing represents an increase in negative perceptions of persons with Down syndrome within our society . These negative perceptions support the abortion of fetuses with Down syndrome. With the increased availability and subsequent use of genetic testing, fetuses with Down syndrome have become particularly vulnerable. Growing numbers of prospective parents are faced with making life or death decisions regarding a fetus with Down syndrome. This study is not abo t judging prospective parents' fmal decisions as right or wrong as each genetic decision is unique and influenced by multiple factors . However, for this critical decision making process, parents deserve a broad picture of what it is like to share one' s life with a child with Down syndrome from birth to adulthood so that prospective pare nts' deci ion are well informed. ar nt Ap r ciati n r m a c n tructi ni t p r p ti th m antng c n truct d a yndr m ar c ntinually n g tia 1 . It i 1m a umpti n ab ut rtant t qu wn yndr m and what it might gen tic pro p cti par nt in thi d li consideration per p cti e and r rati wn ti n tak n-[i r-grant d lik t p n nc par nting a d ct r , child with D wn yndr m and f r th r m aning . H alth peciali t ut 14 u pr ti n . h m anmg and 1mag s cr ated ab ut parenting a child with D wn yndr m fr m th appr ciati dial gu re earch are int nded to add br adth t fact r con ider d b pr c ntained in thi p ctive parent and the health care professional that a si t them in making deci ion about the future of fetu es with Down syndrome. Organization of Chapters This study is presented in five chapters: In Chapter 1, I introduce the topic, which includes the research problem and question, the impetus for and signjficance of the study . In Chapter 2, I present the literature review. In Chapter 3, I outline my research methodology, description of my approach, and ethical issues and considerations. In Chapter 4, I present analysis of my fmdings and in Chapter 5, I share a summary of the study, my conclusions, limitations of the study, and implications for further re earch, practice and education. Par nt Appr ciati n 1 hapt r 2 it ratur R i w Social Constructionist Inquiry he traditi nal und r tanding a Down yndrome have gt e u our n came into exi t nc n c n truct d wn ndr m and r nting a child with W t rn ci ty within n er ati n that ut a t 100 m th Ia the w rking languag u d to d crib wn fr ality . r th enlightening per pecti e on h w D wn ar ndrom ha In the e taken-for-granted con truction Down yndr m 1' wn yndr m " ndr me pr vid an m t b g nerally under t od. 1 c nceived ass mething to be cured or prevented. The term in language u d to describe the condition referred to as Down syndrome speak for them elves: mongoloid idiocy, an imperfection in DNA, fetal abnormality, choromosornic abnormality , severe disabling, genetic disease. People with Down syndrome have been labeled with titles such as mongoloid idiots, mentally retarded, mentally handicapped, clisabled, slow, and mentally challenged. Giving birth to a child with Down syndrome has been described a a "tragic instance" (Berube, 1996, p. 25). While not discounting that there are biological differences in a child with Down syndrome, these differences have been inordinately skewed to mean pathology and negative experience. In this study, I am adopting a social constructionist perspective and want to offer other experiences to these dominant, cultural dialogues on Down syndrome and parenting a child with Down syndrome. I would like to elaborate now on what I mean by a social constructionist perspective. Par nt Appr iati n Thr ugh ut hi t ry human m aning f kn wl dg d mg ha r ality, and truth. ci nti t wer H we er, n id r d apabl er tim ha i on 'truth or n a bj f upplying ti i ntifi m thod ring what wa r al and what w c m p tm d m m urat t di c v r th chall nged th m uring th R nai anc , the elop d a th perc i d m th d f unc glimp tru . f truth and r ality . em nt that chall ng th li fthat th r wa t und r tand r t kn w th w rld. b lief in the capacity f language t r pr nt th w rld in an accurat and bjectiv manner i b ing challenged. Broad r wa f i wing r kn wing, r ality and truth continue to dev lop and toda ther ar a wide range of acti understanding the con truction of self and world. mqmn 1 h devoted t ne of the e way is called the ocial constructionist movement. Ernest ( 1995) states that there are as many varieties of constructionist positions as there are researcher . Gergen (1999a) shares that there is a pervasive tendency to view current constructionist inquiry as a unified front. However, he states that there is a wide range of variegated and overlapping ideas and practices with three major movements in constructionist inquiry - ideological, literary-rhetorical and social. Each of these three major sources of contemporary construction shares in their critique of traditional views of language and authority but differs in their mode of critique and their political investments. For the purpose of this paper, I will be coming from a social constructionist position. According to Gergen (1994), renowned scholar of social construction, there are several important assumptions that are made by a social constructioni t science: ar nt Appr iati n • The term by which w ace unt [i r th w rld and ur 1 tipulated obj ct • are ocial artifact pr du t und r tanding f th w rld and ur 1 f hi t ri all and culturall peopl . [W und r tand th w rld and ur 1 t which a gi d p ndent on th ar n t dictat d b th f uch ac ount . he term and form b whi h w a hi • The d gr 17 bj cti n ace unt fw rl ituat dint rchang within th r nt t fr lati n hip.] lf i time i n t alidity f th a c unt but n the ici itud proce . [Meaning ar c ntinuall neg tiabl until w find am ng f ocial m thing that w rk for u . People u e ati fying meaning for them el e in di cus ion with others or renegotiate their meaning • hould new experience find them inadequate.] Language derive it significance in human affairs from the way in which it functions within patterns of relation hip. • To appraise existing forms of discourse is to evaluate patterns of cultural life; such evaluations give voice to other cultural enclave . [In language there are taken-forgranted patterns, repetitiveness, and engrained patterns. Thus language used in local ways excludes other experiences.] (pp.49-54) Gergen ( 1999b) states that "the vast share of human action grows out of interchange and is directed into further interchange .. . .Words are not 'my own' the authorship is misleading. Rather, I am a carrier of relationships, forging them into new relationships" (p.6). Par nt A ppr iati n Murph ( 1 97 p int ra r ality d not ha an bj cti reality and that p pl int rpr t and int raction with th ir n ir run nt. "very difficult t a c n tru ti ni t i w argu ut th lut a\u trul t an p rti ular r ality p transparent D undational r that kn wledg and r that th r i n way fkn wing thi n tru t r ality a d n th ir n 1 n n and nt ring a c n tru ti ni t fram w rk it i it , truth claim , r m ral principle a nd c n tructi n ... n tru ti ni t thinking t nd to remo e th grounds :D ran strong claim t th r al and the g d '( erg n, 1999a, p.6). By using a ocial c n tructioni t fram w rk I invit r f1 cti non our society ' s taken-for-granted a umption regarding Down yndr me. ergen (1999b de cribes the danger inherent in the solidification of an given way of con tructing the w rid . He states: It is essential to set in motion proces es of reflexive deliberation, processes which call attention to the historically and culturally situated character of the taken-forgranted world, which reflect on their potentials for suppression, and open a space for other dialogues of the culture ... .Reflexive deliberation has been, and continues to be, a significant form of scholarship within the constructionist frame. (p. 5) This thesis might be viewed then as reflexive deliberation focusing on what has been excluded from the dominant discourses regarding the experiences parents appreciate about parenting a child with Down syndrome from birth to adulthood. Appreciative Inquiry One application of social constructionist thought is " appreciative inquiry". Appreciative inquiry, according to Gergen (1982, 1990), treats social and p ychological ar nt 'Appr iati n r ality as apr duct fth mom nt (1995) of im n Fra r ni r ity tat that and p ch I gical r ality a apr duct f th m m nt argu that th th ri w h ld ur a pow rful organizing ffi ct nth natur beli but th f ry a t f b lie ing it cr at . R. u h wh tr at cial n tru ti n. ntinu u r p nt r. nt ntinu u r c n tructi n ut ial y t m , hav a li f a cia! r ality . ' t nl d w e what w it rrid rand riva tva .14 . (1987 contend that looking at th pr bl m in rg nizing and inquiry r due pos ibility of generating n w imag 19 th of ocial r ality , n w the ry that might help tran cend current ocial forms . Bu h (1995 ) ask th qu ti n , ' What if in tead of seeing organizations a problem to be ol ed w aw them a miracle to be appreciated? How would our methods of inquiry and our theories of organizing be different? ' (p.15) Bushe states that in the past he focused on under tanding the failures and pathologies of leadership and organization and now he focuses on helping people become aware of how good things are. From this stance he is finding that change happens more easily, people don't get so bogged down in despair. "The appreciative lens has opened up a new vista for viewing and understanding the process of change in human systems" (Bushe, 1995, p.15). It is my choice to put on an appreciative lens rather than get bogged down in despair, and help generate new meanings and images of parenting a child with Down syndrome. ar nt Appr iati n 20 Construction of Disability Biological Construction ofDisability Wh d fin and id ntifi indi idual a di abl d ith r h icall The World H alth rganizati n att m t d t uni the Jnt mali n I 11 n if Imp 1rm nt , 1980 . Und r th W rld alth defin d a 'any 1 structure or function rganizati n or abn rmality f p WH at g ry 'di a 1 d' und r r aliz th 1 bJ!JtJ r m ntally? nd Hand1 rp, (W I , cla h l gi al, ph i 1 gical , r anat mical 1980 p.27 . Impairm nt i d fined " primarily by th se qualified to judge phy ical and mental functi ning ace rding to g nerally accepted standards" (WHO, 1980, p.27). Impairment are di turbance at the level of the organ, which include defects or loss of limb, organ or other body structure, as well as defects or loss of mental function (UN, 1990, p.1). Disability is defined as " any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being" (WHO, 1980, p.28). Handicap is defined by the WHO as "a disadvantage for a given individual, resulting from an impairment or a disability, that limits or prevents the fulfillment of a role that is normal (depending on age, sex, and social and cultural factors) for the individual" (p. 29). This broad concept of disability was used in the Statistics anada Health and Activity Limitation Survey (HALS) to develop an in-depth profile of people with disabilities in Canada (WHO, 1980). In British Columbia those labeled with a mental disability are categorized into three broad categories, the mentally challenged, the chronically mentally ill, and those with other mental health concerns (British Columbia ar nt Premi r' Forum 1 chall nged b cau ppr iati n 21 nditi nand th c nditi n i pr nt 4, p.4). the ar b m with a p rman nt at all time thr ugh ut n 1ifi . Historical Construction of Disability dat Negati Ci ilization. In An i nt de r c ac t th davming fWe t m ft n i \ d a th cradl loped W t m w rld, indi idual with di abiliti f i ihzati n in the w r lumped al ng id live and outca t nam ly la and w m n. Indi idual with di abiliti con idered the pri at p opl a pp d t th " public p opl ", in were' the idiots '. However the idiot held en le ther 1 w w r r ek t rm , they tatu than women or laves. They were considered monster , the lowe t form of life. If the could be identified at birth, they were put to death (Stratford, 1991 p.5). Attitudes in Europe during the Middle Ages continued to reflect rejection and intolerance of those considered to be disabled. The birth of a child with a disability was associated with sin on the part of the parents (Stratford, 1994). "Feeble minded" children were thought to be born as a result of a liaison with the devil and both they and their mothers should be burned at the stake. There was a well-established assumption that somehow evil was involved in the birth of these children (Stratford, 1991 ; Coleridge, 1993). By the mid-1800s, physicians, psychologists, and medical scientists had come under the influence of a relatively new science known as statistics. These new scientists had a distinct way of looking at the world and at the people in it. Re earcher looked at ar nt Appr iati n larg numb r pie and tri d t d cid h w t gr up th m a c rding t diffl r nt f haract ri tic . w t m a ur int llig nc w m thing "g n ral int lligen f th m r a tra t human hara t ri tic lik m n id r d ri d d rth tud in g. If th r wa m th n it c uld their l el of int llig nc During thi 22 1 ur d and uch a thing a uld b rank d ace rding t 1. alt n, u m f harl arwin , wa the fir t t a sert that intelligenc wa a ci ntificall m aningful c nc pt an that it w inh ritabl . He concentrat don de 1 ping n w tati ti al and anthr p m tric techniqu tom asur intelligence (McLar n 1990). In 1 3 alt n a ert d that th used to encourage selecti e breeding could sol tati stical approach, if the ocial ill that plagued Britain by developing enhanced humans. He graded and counted people according t their civic worth in the categories of desirable, pa sable, and unde irable and pushed for restricted breeding for the inmates in prisons, hospitals, and for the feeble-minded. Galton' s "positive eugenics" was to encourage the fertility of the fit (McLaren, 1990). Francis Galton's theory of eugenics had enormous appeal, not only in Britain but also in North America. In the United States by 1911 , the American Breeders Association had been established to oversee the reduction of the mentally retarded population. By 1926, 23 states had made sterilization mandatory for any individuals considered mentally deficient. This resulted in the involuntary sterilization of over 60,000 individuals with mental retardation or illness by the year 1960 (Glover & Glover, 1996). In anada a early as 1922, H. S. Patton, a University of Alberta economi t not d that the ri of eugenics was a symptom of the new reign of professional expert who ought to control ti n ry ituati n. At th ci ntificall the No a c tia H outgrowth n hi t rically m pi tal :D r th In an ci ty c uld n t ritain th that per ns with di a iliti imperfl ction that am tim r. Al and r du M u rint ndent D r d ar n 1 anada th r w r in tan w r n t highl r gard d but rath r ntaminated th g n ti id u and di d clar d that th p rmitt d t r nit d tat an er 0). hu that ugge t n id r d tr am. Cultural Construction of Disability To look at ur pre nt cultural c n tructi n f di sa ility w mu t also look at the cultural construction of what it mean t b n rmal ' :D r with ut lo king at the construction of normal, the cultural con truction of di ability would be difficult to discuss. These two constructions seem to go hand in hand. Everyday we are bombarded with information about what it means to be a normal human being. Despite the fact that human beings are refreshingly diverse in shape, size, color, texture, structure and functioning, both mentally and physically, modem commercial cultures construct the requirements of normality early in life. Anyone that deviates from these requirements is subject to much ridicule and biased treatment. Children are taught in our society to conform to standards in body size, carriage, movement, gesture, speech, emotional expression, appearance, scent, ways of eating, control of bodily functions such as salivation, passing gas, urination, and defecation. These standards are enforced by teasing, taunting and the threat of social o tracism (Wendell, 1996). P r nt Appr ciati n Th f normality appl n t nl t th phy i al haract ri tic di ciplin human b ing butt th ir m ntal apa iliti a w ll. ietal n n u that ha ing a child l meaningful. Fletch r ( 197 defi ct ha a 1 le f hildr n learn that it i imp rtant to k ep up top r£ rm a ad mi all at a c rtain tan ard r app ar to b 24 ubj 1 d n rmal i r f1 ct thi n ti n wh n h tat tt failur . hr ignifi anti that "a fl tu with a v r r m ral claim n th m ther than a n rmal ' child b cau e he r h lik ly t re p nd t th pr m1 e f b (p.672). Kliewer 1998 tat that th mmg a n in th c mmunity f per ns" ocial c nstructi n of th nature f childr n with disabilitie produce a cultur that prop rtionat to their percei ed defects, devalues them. Goodey (1991) takes us back to the creation of conversations around the word normal, as we know it today . At the time large- cale institutions were being set up to segregate people labeled insane, the science of stati tic was also taking hold. Medical science became enmeshed in the task of relegating how many people belonged to different groups according to intelligence. Tests were devised to measure how much intelligence one person had compared to someone else. Thus, there came to be a "common or normal intelligence" that was easier to measure. At first normal was a new word and meant something like average. However, since many of the groups categorized were considered inferior, this changed the perception of the word normal. Normal became a word constructed with a positive value attached to it. Normal intelligence became measurable with a val ue of superiority over everyone who was not considered normal. ar nt Appr ciati n Today, n rmal int llig n or ther about d note th b rag indi idual '. I t and a c r me f 10 imp rtant t that r a rung a rtain 1 int llig nc 1 n Dr reaching a tat f 'hurnanne '. H w r, trat[i rd 1 1 tat s ft n cit d a th m tim that although intelligen thi t 1 in th ir ey . Lu thau th pr r qui it a i m a ur d b a ari ty f I 25 tate of hum ann it f rtant pr r qui it D r r aching i th mo t difficult human charact ri tic t d fin . oo frequently we ha e to fall ba k n th m a urement f I , the int llig nt quotient, or h w much one has of it in r lation to how much of it one n ighb rs have " p. 7). tratford suggests that IQ te t are a crude mea urement of intelligence at the be t of times. Nonetheless, IQ tests are still used as criteria for distinguishing between whom is considered normal and who is mentally disabled. Current cultural constructions of disability appear to reflect our culture's aesthetic norms and preferences. In our highly competitive ociety certain human abilities and characteristics appear to be valued over others. Physical beauty, youth, virility, intelligence, and health, are all characteristics that are highly prized. Our society seems bent on producing "a perfect human being", the Brave New World' vision, referred to by Bjerklie, Dorfman, Gorman and Nash (1994). Blumberg (1994) states that people with disabilities have been objectified and no where is this objectification greater than in babies with disabilities. Babies that are labeled disabled are con idered "defective" and labeled with such terms as "glaringly imperfect", "nature's mistakes" and "gro sly malformed"(p. 137). According to Murphy (1995), who became disabled as an adult, our present Par nt Appre iati n cultural c n tructi n 1 contra en all th alu n that a f uth 2 that th di a 1 d indi iduall and a a gr up, irility acti ity and h ical aut that Am rican cheri h. Wend 11 (1 96 r gard thi curr nt 1 I f ultural id alizati n and que t fl r p rfi cti n a c 11 ti an ali nati n fr m x ri nc and reality. h qu tion wh de fin di a iii con qu nc . W nd 11 tat m ur i ty , ~ r what purp bj ctificati n, , and with what that w n d an und r tanding f di ability that c nte t the dominant di c ur e f humanity a y ung and h alth . W nd 11 tat ha biological ocial and xp ri ntial c mpon nt and 1 k at th di ability ' through th failure or unwillingne that disability cial c nstructi n of t cr at ability among peopl who do n t fit the physical and mental profit of paradigm citizen (p.40). The cultural con truction of disability is focu ed on weaknes e and inferiority rather than strengths and capabilities. Murphy (1995) believes most people labeled as handicapped are subverters of the American ideal and as a result are interpreted by many people to be ugly and repulsive. Dahl (1993) exhibits how the media supports this construction. He states, "the mass media affects public opinion and public perception of social reality by their ability to create typifications"(p. 79). Children' s classics are particularly graphic in their depictions of the villains as ugly and deformed while heroes and heroines are beautiful and graceful. Dahl suggests that Hollywood has tended to sentimentalize the disabled and film and television still often portray the disabled a helpless victim . However, Ingstad and Whyte (1995) state the concept of disability itself must not be taken-for-granted as this concept has been culturally con tructed. There are many ti n n tar gniz d at g ry. cultur 'di a ility att mpt t uni r aliz th d finiti n f di di ability and h with n than th wa oth r cultur und r tand thi 27 tat that th W h ili n tru t d in ur - m ri an W t m ci ty i difD r nt nc pt and fundam ntal th m underlying our d finiti n f di ability i th a um ti n f th d ira ility r imilarity p. 7 view d as di ability and W nd 11 1 di abilities might b i w da h i al r m ntal diffl r n In ur ugg that in an id al tting aluabJ fl r th ir diffl r nt kn wl dge, experi nc in tead of b ing pitied, patr niz d, r hunned. ar ft ntime pl with r pe tive and i a ility right activi st and scholars alike are now focu ing on the s cial proce e that construct handicap not so much in term of pe ple with impairments but a outcomes of society 's discriminatory practices (Anderson & Bury 1988· Williams, 1989). If there was more acceptance of differences and not such a strong striving for what is considered normal in our society, Down syndrome might not be considered a disability but just another way of being in the world. Construction of Down syndrome Biological Construction of Down syndrome Down syndrome occurs in all parts of the world, irrespective of race, creed, color, climate, or economic status, with an overall incidence of approximately one in 700 to 1000 live births (Trumble, personal communication, April, 1997 ~ Stratford, 1994 ~ Steele, 1996). The exact cause of Down syndrome is still unknown. However, the biological mechanism by which Down syndrome occurs is now understood. All people with Down P r nt Ap r iati n an extra critical p rti n f th num yndr m ha r 21 chr m m pr nt in all ur at r ar und th m ment f c nc om ofth ir c 11 . Thi g n ti alt rati n The additi nal g n tic mat rial , in th rrn f xtra g n al ng th tw nty-fir t d pm nt and cau th chrom m alt r th c ur with the yndr m . pp ndi ~ r hara t ri tic as urth r in rrnati n nth r ti n. iat d i 1 gi cal d finiti n ofDown yndr m .) The mo t well kn wn hara t ri tic a retardation . ( ciat d with wn ndr me i "m ntal e Appendix B form re d tail d d finiti n o mental r tardati nand developmental di ability . Th Nati nal Down yndr me ciety tate that D wn syndrome account for one third of all ca e of mental retardation (p rsonal communication, November 25 , 1996). Historical Construction of Down syndrome Individuals with Down syndrome do not constitute a new presence in this world. For centuries, people with Down syndrome have been alluded to in literature, science and art (National Down Syndrome Society, personal communication, November 25, 1996). Historically, people with Down syndrome in the developed, Western world have been judged harshly. Stratford (1996) states that in European society, handicapped people were lucky to survive at all. People with Down syndrome were easy to pick out as different and therefore easy targets as patients for the first institutions that were developed in the 1800s for those considered mentally defective. Britain's first large-scale institution to segregate and incarcerate the "idiots" and "the insane" or people considered mentally defective came in the mid-1800 along with 2 ppr iati n th d velopment of ug me . angdon D wn. He had d h chi f h i ian at thi n win tituti n wa a t d him lf t th tr tm nt f th men tall d fi i nt though th c mm n train f th ught wa that n thmg c uld pe ple o d hang th beyond reach of all m dificati n tratf r 1 r. wn appearance tog ther with the n wid a n f r th typ hiatry umm d up . In rd r t e ta li h int 11 ctual m ary t Disregarding hi c 11 agu d n th f: th r n id r d t 19 1 . the thinking f th time: ' It i u activity, it w r. J hn n rmati n f th rgan which ar 4 ld emphasis n ph sical f tati tic and intelligence. He dev loped a theory that some people at the lower end of th int lligenc cale might have a diffl rent physical appearance from the rest. He found that there was a gr up of people in this large institution that he labeled Mongol because of what he considered to be their Mongolian type facial similarities; for example, their almond shaped eyes. Down appeared to regard the retarded as evolutionary throwbacks or "atavistic regressions" to inferior races, hence his "ethnic classification of idiots" (Clarke & Clarke, 1996). Ethnicity was an accepted cause of mental deficiency during this time and the further away from London one lived, the more primitive one became (Goodey, 1991). To use the label "mongoloids" fit well with Down's construction. By the turn of the century, the condition Down had labeled as "mongoloid idiocy" was now also being referred to as Down syndrome. Throughout the 20th century, advances in medicine and science enabled researchers to continue the study Down had begun. In 1959, the French physician, Jerome Lejeune, identified Down syndrome as a chromosomal anomaly . Instead of the Par nt Appr ciati n pr entin ach c 11 , u ual 46 chromo m indi idual with wn ndr m red 47 in th c 11 un di f tratD rd 1 4 . Cultural Construction of own syndrome ince th fir t m dical d en ti n f Down in th la t century ther ha accumulat d ab ut wn ndr m wn ndr m put[! rth n a a tam unt wn in medical term u d to d cribe a hr m ar hand kn wledg ndr me ha b c me d minantly p rtray d mal an mal intellectual delay and ph ical irr gulariti r r. angd n rag n tic di ea oucault 1 77) ha that cau es ugg sted: n language (including all fl rm of text) and th rei a clo relationship b t\ ocial proce (concei ed in term of power relation ). In particular, as various professions (e.g. the sciences, government religion, and the courts) develop languages that both justifies their existence and articulates the social world, and as these language are placed into practice, so do individual come under the sway of such professions. (p.102) The primary development of historical and cultural forms of discourse about Down syndrome have taken place in medical and scientific circles and created language that articulates Down syndrome predominantly in biomedical terminology. There is no disputing the biological differences in someone labeled with Down syndrome and medical terminology has been dominantly used to discuss these variances for more than 100 years. However, this powerful, bio-medical discourse about Down syndrome ha empha ized pathology and abnormality and has created the cultural con truction we know today. Kliewer ( 1998) identifies what he calls the "commutative law of Down yndrome: mental ar nt Appr iati n n and th retardation and D wn yndr m ar h ld t am · nam 1 n and it i th am a th other p.5 The d minantl n gati d picti n p rp tuated with bi -m di al d en ti n . text a 'An imp rtant and tragi in tan syndr me r m ng 1 id idi y ru wn f wn f tri ndr m 1 till di cu m in human m .2 1 ndr m c ntinu t d in g n tic wn In m dical j umals th :D cu often on health complicati n : Down syndrome ... i the c mm n t cau f m ntal r tardati n and i al o a sociated with maj r tructural anomali f th h art and gastr inte tinal sy tern and an increased ri k of leukemia. arl mortality i high, mainly due to congenital heart defect ... Mo t surviving adults go on to develop brain abnormalities that are typical of Alzheimer' disease. (Williams, 1995 , p.47) These accounts illustrate the medical dialogue used to describe a person with Down syndrome. With our society ' s strong drive for normalcy and perfection, many people, including health professionals, have come under the sway of this medical language. Focused on terms that describe health complications and intellectual delays, these dominant discourses on Down syndrome have articulated our social world and focused individuals on the medical label of Down syndrome. Along with these dominantly negative medical articulations of Down syndrome, comes the perspective that having a child with Down syndrome is a drain on resource . Stein, Susser and Guterman (1973), Sadovnick & Baird (1981), onley (1985), Hook (1994), and Kupperman, Golberg, Naese, and Washington (1999) have done studies that P r nt t ting and ab rti n caring :D r om n with n ma h r wn ndr m put attractiv . Pu ch 1 19 1 soci ty w uld a plain that th m n y if fi tu aborted p.189). With th pr ailing di c ur complications and financial burd n f t- wn with wn wn 2 ut th burd n that hey nth m d1 al d li a hil with conclud that pr natal id ntificati n ti n ppr ndr m n fit tudi ndr m w uld e n mically ft n indi ate that le ti 1 u ing n the m dical pr bl m , ndr m , the curr nt :D us n prenatal detection and prevention appear rea onabl and irrefutabl . With the availability of genetic te ting the diagno i of chromosomic abnormalities, specifically Down syndrome has become common place in our society. Prenatal diagnostic technique have slipped almost unnoticed into routine obstetric care with little public scrutiny or debate (McDonough, 1990). Kolker and Burke (1993) state that as prenatal screening for fetal abnormalities has become safer and cheaper, its use has grown. Prenatal screening specifically for Down syndrome is now part of regular prenatal care. Blumberg ( 1994) states that "prenatal testing has become entrenched in American culture" (p. 136). Because the risk of Down syndrome increases with advancing maternal age, policies to offer amniocentesis and chorionic villus sampling (CVS) (see Appendix C) have generally focused on women who are at least 35 years at the time of delivery. However, with the current expansion of maternal erum screening programs, prenatal detection of genetic abnormalities is becoming accessible for pregnant women of all ages r nt Appr iati n in an ffi rt t parat mild and n n nlethal an mal li t dam ng cr ning pr gram in th di lkin and W hingt n, 1 Kupp rman n u an mali nit d tat . rder with an n-1 thal r gn olleg of bst tri ian and tates b offi red a tripl women, regardle wn an mali r wn 1 ndr m wa th [! und b g n tic t h fir t uni r al cr reen [! r of th ir age ar own nly ting in th larg t th Am rican ry pr gnant w man in the ndr m . tat that mng f[i rt [! r a ingl 1s cam aft r th r c mm ndati n n c 1 gi t that 5 urr ntl in nited , all pr gnant ffered th trip I mark r cr en. If the cr n Js return d \vith po iti ere ult th e women th n have th choice fa m re c nclusiv test for Down syndrome. This focus on prenatal detection is the subject of a study done by McDonough ( 1990), who reviewed 104 empirical studie (published between 1967 and 1987) in leading medical journals affiliated with the major Canadian, British and American medical associations. McDonough found that prenatal diagnosis was considered to be a desirable course of action to promote the births of "normal, healthy" children. Social striving for the birth of a healthy fetus versus a fetus considered to have a disability , defect, or impairment is strongly supported in the literature (Glover & Glover 1996; Blendon, Benson, & Donela~ 1993; Botkin 1995; Blumberg, 1994). Botkin (1995) reports that the prerogative of using prenatal screening and selective abortion to avoid the birth of an impaired child has been widely accepted in our society and for the past twenty years 79o/o of the U .S. public had supported abortion in the case of seriou fetal defect. Abortion is not only largely supported by the general public for what is judged to be ar nt 'Appr n u fetal d [! ct but al tr ngl appear t ion. William (1 95 tat ndr m pr gnanc1 that ar d t t d will D wn dat , th rear n n 4 upp rt d y th m dical that th r t rminat d p ific r gi nal r nati nal aborti n [! 11 wing th pr natal diagn wn Palm r penc r u hnick W il r 1 lurn and Glo rand lo and .4 7 . ti tic r garding th incid nc f l cti r 1 96 1 ti ndr me. rg(l 4, tat that m t w m n fac d with th diagn syndrome choos to t rminat th pr gnan would wish a child to be affected by diagnosis enable parent to exerci own 19 6 w v r, rub 199 ), is f tates, " !early, n own ne ndr me and d vel pm nt in prenatal much great r choice n w" (p.54 ). The desire for normal, healthy babie and the prevailing negative bio-medical depictions ofDown syndrome have helped create the scenario where given a choice, the majority of women will not bring a fetus with Down syndrome into the world. I suggest that women's choices are strongly influenced by our historical and cultural constructions of Down syndrome and parenting a child with Down syndrome and that within our society these constructions have become solidified. With these solidified constructions, it is difficult to see someone with Down syndrome as a unique person. However, Gergen (1999b) reminds us that there are critical dangers in holding on to any given way of constructing the world. Centuries of labeling, categorization, and different degrees of persecution of people with Down syndrome has moved us as a society towards collective agreements on what is real, rational, and right about Down syndrome and we have articulated the e agreements in forms of language. The dominant articulations depict a per on with Down ar nt Appr iati n yndr me a the "di ea , wh r the indi idual with fl rg tt n. Kl iw r 199 c mm nt Though the that ar imp rtant h r f m n with wn ut th m amng ur diffi r n g n tic and ph ical diffl r nc our interpretati di ndr m nth phy ical diffi r n yndrome and h wit i n t th diffi r nc ociety ha attached t th wn pr c ar a r ality ut id and apart fr m it i th m aning w attach t th diffl r nee , th ar nt A ppr i ti n Mo t parent want th b t [! r th ir childr n. Whit in:flu nee reproductiv d ci ion ar par nting alu f th ir childr ~ par n their p ctati n f m typ 1 ) tat th tin lud ar nt d ir t minimiz th ir hildr n c nc m [! r th u ring and f r warding r lati n hi \ ·th th ir hildr n. urr ntly, iti r nmg r ult fl r when pr pecti e par nt r cet a concerns and fear about the fat f that hild \ hat th might cope a par nt are con train d th pr wn ndr m , utur will ring and h w they ailing di c ur n wn yndr me. At thi critical deci ion making time h alth pr fe i nal inv lved in g n tic c un elling (medical profes ional , genetic coun elor , or c un el r ) play a crucial r le in helping parents make informed deci ion b providing a balance of information about Down syndrome. This information need to include not only the medical issues regarding Down syndrome, but also what it might be like to share one 's life with a person with Down syndrome. Regardless of whether parents finally decide to abort the fetus or continue with the pregnancy, the critical issue is that parents ' decisions are well informed. The Role of Long-term Caregiver As prospective parents reflect on parenting a child with Down syndrome, one of the concerns that may arise is what will happen as their child gets older and enters adulthood. Prospective parents are faced with the idea that their child may not ever live independently. The idea of giving care to or being caregivers for adult children with developmental disabilities is described by Cantor (1983) as at least a two-per on dyad, the person receiving assistance - the care-receiver, and the individual providing care - the caregiver. Caregiving has been referred to as "a life long task" (Roberto, 1993, p.7) or ar nt Appr iati n 1 7 p.4 . With th n 1ng num ndr m li ing t adulth d th l ng-t rm car gi "p rpetual par nth with Down d (J nning r 7 f childr n rb c m m re f an 1 u [i r pro pecti e par nt . With impr d h alth car living w ll into their adult syndrome wa nin y ar communication, rv1 , many hildr n with wn ar . In 1 32 th m an urvi al ag [i raper n with fag ati nal mb r 25 199 ). wn wn ndr m nc rn that w uld hav pr v d fatal [i r a per on with Down yndrom in th pa t ar no 1 ng r hfe thr atening. per on with Down ndr m ar n w ndrome can xpect t r ach age 55 . day 80o/o of urth rmor , improved health care ha al o lengthened survival of par nt and many par nts of children with Down syndrome are now caregivers well into their senior years. Seltzer, Krauss and Tsuenmatsu (1993) state that across all ages fewer than 20 percent of those with mental retardation live in a licensed residential setting. With more than 80 percent of adult children labeled with mental retardation still at home, elderly parents remain the major resource and support for these adult children (Jennings, 1987; Roberto, 1993). Currently, parents are the main caregivers for their children with Down syndrome throughout their lives. Because there is very little research done with caregivers of adult children with developmental disabilities, more research is being called for in this area. Jennings (1987) wants the focus of caregiving research to be on the "nature of caregivers' stresses and service needs" (p.432). She describes some of the problems long-term caregivers face as they age and their own health becomes increasingly fragile . Jenning states that these ar nt Appr iati n lati n 1 n lin fatigu inad quat train n farnil finance r 1 rl ad caregt er truggl with i re ourc ce life tyl 1v and fl ling of burd n. ack:n wl dg th car g1 r in thi ar a. Pro pecti rtainl truggl upp rt fr m c mmunity hang and adjustment f it i 1mp rtant t b a war and c nc m and m r r par nt n ed t kn w ab ut th to make inti rmed d ci i ns and t learn that ar gi ing in and dn arch n hall ng f car gi ing in rd r 1 trum of a full s exp nences. An Appreciati e Lens Roberto (1993) tate that very little ha been written about caregivers of adults with developmental di abilities and that negati e a p cts of caregiving predominat the research in this area. However, more studies are beginning to foc us on the rewards of parenting a child with Down syndrome and the role the parent takes on as caregiver is not one that is totally consumed with burden. Studies by Grant (1986), Gath (1985), Elkins, Stovall, Wilroy, & Dacus, (1986), Pueschel (1991 ), Cunningham (1998), and Van Riper (1999), all suggest there are experiences parents appreciate raising a child with Down syndrome from birth to adulthood. Grant (1986) suggests caregiving of mentally handicapped adults is not just a burdensome association for the caregiver but also serves as a relationship that may provide reciprocity of care and companionship. In his study on older caregivers, regarding their interdependence with the care of mentally handicapped adults, he found that there were strong bonds of mutual aid between some caregivers and their dependents, caregiving was not unidirectional. Moreover, Grant states that it would be wrong to assume that old age brings nothing for caregivers but social euthanasia. He Par nt Appr ciation discov red that n tactic d pl d b 1 n car g1 r w t tract v ry ounc ati fa tion and r ward fr m th pr f caring. car gi ing rol r d and that th traditi nal d c uld b c m partl r relation hip pictured ften, r all r carer and cared [i r (p.33 ). caregi ing than str m f ugg t d that thi m ant that nd ncy fan int rd p nd nc b tween th rant' r earch ugg t that th r i m r t 1 ng-term and burd n. Pu hel ( 1991) not that t da th maJ rity f individual with wn yndrome are not in titutionalized and b com pr ducti e citizens rather than what s me would con ider burden to ociety. Gath (1985) ha conclud d that when things go wrong for a family , the fact that they have a child with Down syndrome often leads people to believe that problems will be the inevitable results of the increased stress associated with raising a child with Down syndrome. However, she found that many families of children with Down syndrome are able to function in a healthy way and a notable number of families have found their lives were enhanced by what they originally thought was going to be an unbearable burden. Elkins, Stovall, Wilroy, & Dacus (1986) surveyed 101, predominantly white, middle income families . They found that over 70% of mothers of children with Down syndrome indicated that their marriage and family had been brought closer together as a result of having a child with Down syndrome, and 84o/o stated the experience had been rewarding overall (p.l92). Cunningham (1998) began one of the largest and most detailed multifactorial programs of research ever done in this area in 1973 with 183 families of children with Down syndrome. Today over 100 families still remain in the study . This study Par nt Appr concluded that the pr d minant impr ndr m i and th ir child with ne f n rmality . Th fa t r that influ n d th w 11 each family in th majority ffamili imilar t th influ n ing an xhibited n path 1 gy a a yndrome but rath r the e id nc memb r ha i n f famili inted t owns ndr me. Van Ri r 1 9 n equ nc iti mg hild r famil 40 ti n wn m mb r f h fha ing a child with wn ffi ct [! r man familie wh n n ha c nduct d i tudi ab ut the family e perienc of living with D wn ndr me and her finding t dat indicate that "while the birth of a child with Down ndr m in ol es a ' chang of plan ' for familie , it does not have to be a negati e e peri nee. In fact, for many familie , it i a positive, growth producing experience (p.3). Van Riper i calling for more re earch that shifts the focus from assessing stress and distress, to assessing resilience and adaptation with regards to parenting a child with Down syndrome. As well, first hand experiences have been shared about parental experiences that challenge the dominant constructions of Down syndrome. Over thirty years ago, Nigel Hunt, a young man with Down syndrome authored the first book ever written by an individual with Down syndrome. His parents had been told many years earlier, that no matter how much trouble they went to, no matter how much love and care they gave Nigel, he would be an idiot and there was nothing they could do to alter that fact (Hunt, 1967). Other parents have been told to institutionalize their children with Down syndrome and instead kept their children at home, loved and upported them, and have gone on to see their children graduate from high school, author books and/or become actors. (Kingsley & Levitz, 1994). It is becoming apparent that there is now academic ar nt Appr iati n lit ratur a ailabl that i ginning t challeng m f th d minant c tructi n 41 f own yndr m . Providing Balanced Information ingly a aila 1 clinician fa in providing a br ad a the nature of the te f inti nnati n t pr th r ult and th significance fa con ultati n with p r n cti par nt pti n a ailabl . Whit r r ourc challeng that th y und r tand 1 impli the that can be c unted n t provide prospective parent with a ariety f iev.rpoint : We make mo t of our important deci ion fi llowing c n ultation with others both within and be ond our immediate communitie · perhap an expert, a trusted friend, or an authoritative text - in any case, persons or resources that can be counted on to provide additional considerations or perspectives ... through dialogue with an infonned partner, the understanding and perception of one's alternatives may be increased. (p.17) The conversations between prospective parents and a health professional during these counselling sessions have the potential of increasing the parents' understanding and perceptions of alternatives. Burke & Kolker (1994) state that genetic counselors now play a vital role in helping parents make informed decisions regarding prenatal testing. However, Williams (1995) states that currently, "concern has been expressed that the information and advice given to parents at the time of these (prenatal) decisions is overly negative"(p. 46). A number of researchers agree that prospective parents need to be provided with more extensive information and greater opportunities for counselling and ar nt upp rt. u ch 1 1 lkin all, Wilr 19 lwn parent rna b in 4 tat 7· and 1 acu that th ad IC g n tic ita ly di t rt d au tting wh r the £ cu is n th indi i ual Int mati nal L agu 42 ti n 4·, and rg (1 ppr f ieti £r lm Mirand , and cti un lar di a led th d functi n. At a with M ntal in anada in 1992 it w hed in m di al nfi r nc h ld ndicap n the i ethical I ue d in pr natal diagn i and couns lling know fright ningly li ttl ab ut th li about new developm nt in educati n and training and about th r a outlook. Worse, they may note en kn wan one affected by n £ rap sitive own yndrome. The conference delegates determined that information provided by health professionals during prenatal diagnosis should not merely con ist of medical facts, but should draw a fuller picture of what can be done to make life meaningful for persons with Down syndrome (Spudich, 1992). Drawing this fuller picture of a person with Down syndrome is one of the biggest challenges health professionals face in their counselling sessions with prospective parents. In the study done by Helmet al. (1998) ten mothers who had decided to keep their babies with Down syndrome had several recommendations for medical professionals who work with parents undergoing prenatal testing. Some of the advice they offered was: Make sure parents understand all prenatal tests .... Do not make a sumption about the parents' decision ... .Do not make judgements about the par nt ' Par nt Appr d ci i n.. .. i n nj udg m ntal in[! nnati n on all thr iati n 4 : c ntinuati n f pti th pr gnancy and par nting c ntinuati n f th pr gnancy and ad pti n up-t -date print d mat rial n plac ment and terminati n f pr gnanc Down yndr m .. . .Mak r [! rr l t accentuate the negati Asch & in (1988) pr p .... n tu wn yndr m pr gram n gati .5 that th m r in nnati n a w man ha a of disabled children and adult , rath r than imply a ' progno is' , th le t nnin 1 gy. tract medical n t ut th r allives nc pti ns about likely h r d ci ion will b bas d n fear and repugnance towards person with disabilitie . Howe er, in ur ociety wher the ' fficial medicallydominated" construction are that Down yndrome is an " abnormality" or ' error of nature' (Williams, 1995, p. 48), health professionals are faced with the challenge of somehow imparting to prospective parent different information about Down syndrome. Pueschel (1991) suggests how paramount it is for genetic counselors to sensitively provide the positive aspects of caring for a child with Down syndrome. He states that factual information, various options and guidance are essential components of these counselling sessions, in order for prospective parents to make independent, informed decisions. Saxton, Anderson and Blatt ( 1991) state what is lacking is information and guidelines on how to support parents who choose to continue with a pregnancy. Finnegan ( 1991) states that information is also lacking for parents deciding to make adoption plans. Kolker & Burke (1993) agree that couples undergoing prenatal diagnosis deserve more complete information about the consequences of alternative procedures so they can make truly informed decisions. H elm et al.( 1998) states that the mothers in their p r ciati n tudy did n t want th ir informati n' ugar- c at d p. 1 . H w want d health pr fe ional t pr id curr nt up-t -dat in[! rmati n a do so in languag that was th und r tanda 1 and n t [! cu d n th neg ti he imp rtance fa c mpr h n iv , th r u0 h di parent regarding D wn yndr m with a alanc e en more ignificant wh n th u prenatal testing tim . Pu ch 1 1991 ut all pti n and t n with pr fin[! rrnati n and pti n m ti nal tate f the par nt 44 ctiv ec me n id r d during thi tate that wh n par nt are c nfr nt d with the diagno is of a fetu with Down yndrom , th y frequ ntly di play impaired decisi n making capacity and they are xceptionally vuln rabl . Palm ret al. (1993) agree that prospective parent are often still in the state of shock when life and death decisi ns must be made and time constraints are an issue because such decisions must be made rapidly. In the study done by Helmet al. (1998) prospective mothers who had had positive diagnoses for Down yndrome made these recommendations for other mothers facing similar situations: Take as much time as you can in making your decision, try not to feel rushed or pressured by others' opinions. Consider the positive and negative aspects of all options. If you decide to continue the pregnancy, then talk to parent of different ages with Down syndrome ... .Gather as much information and resources as you can. (p.60) Berube (1996), a parent of a son with Down syndrome, gives a description of what he considers the ideal prenatal testing setting. Upon learning that their unborn child has Down syndrome, prospective parents would be given all the relevant medi al ar nt Appr ciati n pr gno e about p testimoni ible h alth ri k and at th fr m vari u famili am tim th w uld b . With thi ty fin[! rmati n deci ion kn wing that p pl with ndr me ar indi idual lik an \VD withe ery indi idual c me a ariety f j Blumberg (1994 ffl r d pl with b th par nt and i ling a w ll a fr m Down yndr m ar nt c uld make in rm d n and rr w , and chall ng ugg t that th gr at t failur counselling is that couples are rar 1 4 n uraged t m f nv nti nal gen tic t with di a 1 d p r on or th ir parents. In the stud done by Helm tal. ( 1 98 m ther de crib d m eting r phone calls with parents who already had children with Down yndrome as b ing tremendous sources of support and information. The e mother said that the e conversation with other parents were the single most important connection they made during the prenatal period. The prenatal counselling session that Berube (1996) describes is conceivable. However, in order for this counselling setting to become a reality, parents' voices are an essential ingredient. Goo dey (1991) states that parents' voices are not often heard in the existing academic and professional literature on the subject of raising a child with Down syndrome, in the media or anywhere else. Although there is an increasing amount of recent research about enhanced family environments related to having a child with Down syndrome in the family, parents' voices are lacking. In order to address this issue, Goodey (1991) interviewed and then transcribed conversations with eighteen famil ies who had a child with Down syndrome between the ages of two and eight year . He did not try to interpret but simply published selected extracts to reveal what the parents had ar nt Appr iati n t ay. n par nt in being h ard wh n h o d tud umm d up the ignifi anc tat d 'I d n t think th children (p.l35 . The tran cript pr In thi tud d umenting f par nt ' v ic und r tand d ct r · I can t they can and lik th onl pe pl that r all und r tand ar th n 46 that ha eh w th id d ar larg l appr ciativ p n n par n a pr ciat with adult childr n with D wn yndrom rna add m r c nfigurati n t limit d traditi nal imaginings because of the 1 nger tim p nt by par nts with their 'adult' child. Par nts ' v ices are an essential part of balanc d inti rmati n for pr pecti e par nt , a they alone really understand the joys sorrow , and challeng of parenting a child with Down syndrome. Parents can share the e experience like no one else is able to do. Reason for this Research Question With the steady increase and sophistication in genetic testing, there are continually increasing numbers of critical life and death decisions that are being made by prospective parents about fetuses with Down syndrome. Kolker and Burke (1993) suggest that in real life, reproductive decisions are neither rational nor simple. They state that decisions about prenatal diagnosis are socially constructed in accordance with the parents' experiences, needs, and meanings. The decisions made reflect the parents' backgrounds, the dynamics of the counselling session and subjective perceptions of the different outcomes. It is not the intent of this research to judge th se decisions. very genetic decision will be based on multiple factors and the unique characteristic of each parent's situation. Each individual will re pond to the information provided by the health ar nt Appreciati n prof! 47 ional in th c nt t f h r/hi p r nal und r tanding and ir urn tanc . How v r, th inti rmation pr id d during th profes i nal and pr p ti par nt critical d ci i n making r c . R ar h t dat impli w d t th n gati available during thi m eting tim dominant forms of di cour e on bri f nc unt r b tw n h alth wn that th inti rmati n mad ca e f th l ng tanding ndr me. This r earch ffer an opportunity t experience of parent of adult children with har the rar l c n ider d appr ciative wn syndrome. coking thr ugh an appreciative len , this research expand on the current dominant form of discourse on Down syndrome and what it might be like to par nt a child with Down syndrome and thereby challenges the primacy of these dominant forms of discourse. The findings from this research are based on the voices of parents that took part in this study and the meanings and images constructed as we dialogued together. These findings are intended to add an appreciative breadth to factors considered by prospective parents of children with Down syndrome, and the health care professionals that assist them, in making decisions about the future of fetuses with Down syndrome. ar nt Appr ciati n 48 hapter M th d 1 gy Thi tudy regard pr n ailing 1e wn ndr me and par nting a child with Down yndrom , a d minant cultural c n truction . Aft r reviewing th development of biomedical hi t rical and ultural form syndrome, and parenting children with ovm ndr m f di c ur e ab ut wn I ch e to hav c nver ations with parents and focu on their appreciati e e perienc s f parenting adult children with Down syndrome. I wanted to offer other options to the taken-for-granted patterns and engrained forms of existing discourse about Down syndrome and parenting a child with Down syndrome. My research que tion gives voice to another cultural enclave, one that includes appreciated experiences about parenting an adult child with Down syndrome: What experiences are appreciated by primary parent caregivers living with a person with Down syndrome from birth to adulthood? Because I come from a constructionist perspective, I am part of this study's constructions of appreciation. I have helped create the concepts of appreciation developed in this study through my choice of topic, my assumptions, my questions, and my choice of method and analysis. Together in conversations, the participants and I created the concepts of appreciation to be shared in this study. It is important to remember that as a constructionist, I believe that we create meanings together in dialogue. The concepts of appreciation were not something I discovered as I did this research, but something the participants and I built together. Par nt A ppr ciati n 4 Theoretical Underpinnings for the Approach Used Until rec ntl , a Plag r 1 94 n t , r world iew that fi cu e ar h ha b n d eply entr nch d in a art ian m d 1of inquiry n which m nth sctenc and re arch i ba ed. Th art ian m d 1 has al the sci ntific paradigm r a the rati nali ti paradigm mod l or paradigm f inquiry a tra from our world through th proc paradigm include that ther 1 and g n raliz f t of m dem n c mm nl refi rr d t as uba and inc ln (1982). hi that th r i a di engag ment 0ectifying it (pp. 7-68). Axi ms fthi on singl reality and that the inquir r remains independent and objective. very action can be explained as the result of a r al cau e or causes. The best method for establishing cau e-effect relation hips is the experiment that demonstrates via manipulation that introducing the cause(s) produces the effect, and context-free generalizations are made based on similarities (Guba and Lincoln, 1982, pp. 236-238). Guba and Lincoln (1982) propose that the naturalistic paradigm has recently emerged as a serious contributor in social/behavioural inquiry as it is a paradigm that can "tolerate real world conditions" (p.234). They describe interactions between humans as multilayered and complex and language as multidimensional as it is used in different contexts. The naturalistic paradigm fits with my constructionist perspective. It enables me as the researcher to cope with actual world conditions rather than manipulating those conditions to meet the design requirements of a more rationalistic paradigm. Therefore, the naturalistic paradigm was used to guide this study, as it is the paradigm that fits with a constructionist perspective. Th r ar fi e ax1 m utlined by naturali tic paradigm and th will b u a and e penenc an p pl int rpr t and ribe the ial c n tru ti ni t the ry h fir t a i m tat c n truct db con tructi ni t p r p cti ln 1 2 that d amin d in r lati n t and th ar a f inquiry t illu trat th fit. intangible r aliti in that th r ar multiple, tudi d h li tical! . r ma n tru t r allty a d n their and int ra ti n . W c n tru t ur m anmg , ur r ali tie , ur truth , a we relate to one another andy t m aning , r aliti we find omething that work for u . truth , ar ntinually n g tiat d until h caregi er ha had d1fferent xperience ; each parent creates hi !her own r ality a he/ h int ract with hi /her child and oth r . The econd axiom states that th re i mutual interaction between the inquirer and the respondent. Guba and Lincoln (1982, p.239) believe that it is impossible to abandon one's humanness when doing research. They state that the inquirer and other human beings, or the participants interact to influence one another. During the interview , the participants and I turned to each other in language and constructed our meanings of appreciation together. I interacted with the participants and used conversation to negotiate shared meanings of appreciating their adult children with Down syndrome. The third axiom recognizes that generalizations are impossible since phenomena are neither time nor context free. The naturalistic paradigm recognizes that in the social/behavioural sciences, "the truth" at one time and in one context may change to a different truth in another time and context. Differences are as interesting as similaritie . rom a constructionist's perspective, it is very difficult to accept any particular solidification of the world, as meanings, truth, realities, are continually negotiable. P r nt Appr uba and inc ln 1 1 ti n 1 2 r c gruz that in th naturali tic aradigm human m m a ure of generalizability fr m n par nt nt :-.1 t an th r ituati n and c nt under to d t b diffi r nt. T g n raliz i n t a g al f thi r ti coming fr m naturali tic and c n tru ti ni t p r creating om truth ab ut c rtain a p ct The£ urth axiom stat ar h. t ar . . an mqutr r I am n t c ncemed with f parenting. that all ntitie are in a tat f mutual imultan fr m f£ ct " (Line In & u shaping so that it is imp ible t di tingui h cau uba, 1985, p.38). Inquirer can only tabli h plau ibl infer nee ab ut th pattern in any given action and is best done in the fi ld in a holistic, natural cont xt. There can be no certain way of determining a cause-effect relationship. The aim of this research is to focus on the rarely considered experiences parent appreciate about having an adult child with Down syndrome, not to isolate a cause-effect relationship. The fifth axiom is that inquiry is always value bound. Naturalists presuppose that inquiry is based on the value systems that characterize the inquirer, there pondent, the paradigm chosen, the methods selected, and the social and conceptual contexts. "Anyone who has done research involving humans is well aware that one cannot abandon one's own humanness in the interest of 'objective' inquiry; it is impossible and ethically undesirable to do so" (Guba & Lincoln, 1982, p.240). A rationalistic paradigm, where the inquirer attempts to remain value free, independent, and objective is not possible or desirable according to Guba and Lincoln. As the researcher I have expo ed and explicated my values so the reader knows where I am coming from a the inquirer. U ing ar nt Appr iati n con tructi ni t th m amng ry I c n id r m f appr iati n that builder inc n m 2 lf a part f th c n tru ti n f th c nc pt and ut thi r arch. I am n t a di r ati n with m parti ipant Th r wa littl qu ti n that a qualitati r ar h d ign fit with my con tructioni t tance and with th ph n m n n that I want d t int rview I all wed par nt t n n har th ir negotiation of n w m aning t g th r. ar ing in d pth m r full and facilitat d the ar h r it wa 1mp rtant t me to communicate cl arl what I had don . Ther for e plicitly. According to tud . I d cum nt d m meth d of research ilgan (1993), the fit of the qualitative appr ach to the research study i critical for seriou and aluable re ul : Qualitative approaches are about ideas: discovering them, developing them , and communicating them ... We cannot as ume readers will understand what we are doing. We not only must do our research well and write it up in ways faithful to what we have found, but we have a special burden of explaining to others what we have done, why we have done our work the way we did, and why ideas supported by words and not numbers can be serious and yield valuable results .... The burden is on us to figure out and communicate what we did. (p.179) Method I chose some of van Marren' s (1997) research activities to use in my study because they provided salient guidelines for a beginning re earcher. Plager ( 1994) state that as one gains skill and alacrity in interpretive work, that th need for models canons, P r nt guid lin and rul guidelin and th r t h lp m • fall away. H w r a a b ginning r ta fl ppr iati n archer I u d th u d: urning t a ph n m n n that eri u I ar h rand c mmit him r her to th world. Reflecting on th e entia! th m • • • that haract riz th ph n men n. e cribing th ph n m non thr ugh writing and r writing. Balancing there arch c nt t b co id ring art and wh l . pp.30-31) Dimensions of the Sample I began my re earch in January 1999 when I made initial contact with potential participants. The ampling procedure u ed in thi re earch i known as purposive sampling. Palys ( 1992) describes thi procedure as one that does not aim at "representativeness" (p. 146). The criterion for inclusion in this tudy included being a primary parent caregiver and having a child with Down syndrome over the age of eighteen. I enlisted the help of two people who work with adults with Down syndrome who intentionally sought parents who met the criterion for inclusion in the study. They gave me names of six families who resided in either Prince George or Comox. Of these six families, all six mothers agreed to be part of the study. However, three of the mothers wanted to include their spouses in the interviews. One mother stated that both she and her husband contributed equally to the caregiving and therefore she could not stipulate who the main caregiver was. The other two mothers stated that although they were the main caregivers, the fathers still wanted to contribute to the interviews. Both fathers in these two cases had been involved in many a pect of the r nt Appr ci ti n car g1vrng pecially aft r r tirem nt. In th nin par nt , ix moth r and thr nd th r w re i famili fath r wh t with D wn yndr m had n part fth c n Dimen i ns fth r ti n in thi \vith at tal f tud . Th childr n pp ndi tud . ampl ) P t ntial participant participating in th r k part in thi 54 nta t d b ph n . p n c nfirmati n f int r t in arch I arrang d an int rvi w tim and dat . interviewed, each participant wa nt a 1 tt r my research and a con nt [! rm. ( ee App ndi c.D rc mg intr du ti n utlining the purpo e f ) nfid ntiality and the v luntary nature of th ir participation were empha iz d. I had a h rt briefing ion b fore each interview to make ure that the participant under t od th context of the study and were comfortable with the use of the tape recorder. Any questions that the participant had were answered at this time. Once the consent form was signed, an identifying code number was given to each participant that identified him or her throughout the rest of the study. The research consisted of a total of twelve interviews; six initial interviews and six follow up interviews. A block of time lasting from one to two hours was allocated for each initial interview. All the interviews took place in the participant ' homes except for one set of interviews, which took place in my home at the participant's request. Each parent or set of parents was interviewed two times, the initial interview and then a second interview to check out my interpretations. hours to complete. ach interview took an average of one to two ar nt A pr iati n Data Collection In thi thr ugh an appre iati appr ciat d a each caregi f dial guing with arent tud th int rvi ut par nting a child \ ith rw as ar gt initial int rvi \ e pl r d th l n . dt d n wn and la rat n r m fr m irth t adulth n th n n r d and . an Manen (1990) tate that £ r int rvi wing: .. . it may be helpful t b in tance ituati n, per n fullest .... And when think fa sp cific ry r nt. h n r it e m that th per generalize about the experienc plor th wh I e p rienc to the n b ing int rview d begins to you can in ert a que ti n that tum the di cour e back to the le el of concrete experience. pp.67- 68) I attempted to conver e about concrete experiences and establish an atmosphere where the participant felt safe enough to talk freely about her or his experiences and feelings. I tried to encourage the parents to explore their experiences and no participant was stopped from sharing if the interview went a little longer than expected. I used the questions and probes provided in the interview guide (Appendix F) to help facilitate the discussion around what parents appreciated about the experiences of parenting a child with Down syndrome from birth to adulthood. Underpinning each of the interview conversations was the fundamental research question. At the end of each interview I followed a debriefing procedure. Kvale ( 1996) states that the subject may be tense or emotional after such personal haring and it is important to close with some debriefmg time. I found that once the tape recorder wa pr ciati n turned ff th participant c ntinued t har and a qu ti n b rat 1 a t fift en minute . Aft r I had c mpl t d a h int rvi wand 1 ft th parti i ant fift n to thirty minut imm diate impr f qui t tim t r f1 h m It k t n ach int rvi w and k pta j urnal ab ut r calling an p rtin nt in[! rmati n n t captur db the tap ale ( 1 all a alua 1 c ntext b r the later analy is of th transcript . It i imp rtant a rding t Kr fting ( 1991 that the recorder. Thi wa d n t pr id what research r utiliz s r fie · ity in rder t e aluat the influenc background and construction on th r fthe re archer' arch tudy . Therefore, my background and assumptions were noted before the research began and ong ing field note were kept during data collection and analysi a an important supplement to other data collecting methods. All data was considered valuable. Bogdan and Biklen (1982) state: the tape recorder misses the sights, the smells, the impressions, and the extra remarks said before and after the interview. Fieldnotes can provide any study with a personal log that helps the researcher to keep track of the development of the project, to visualize how the research plan has been affected by the data collected, and to remain self-conscious of how he or she has been influenced by the data. (p.107) One of the things I noted upon reading my reflections was the importance of nonverbal communication. There were situations that transpired during the interviews that were not part of our verbal discourse, and yet appeared to be way s parents di played their love and caring for their adult children with Down syndrome. or example, after pr ciati n two f my int rvi w w r c mpl t ~ par nt w r an ' 1 u t f th ir child b 1 ngmg that th writing and art a cof[i cup , p refl cted n thi 1 u th 11 cti n d k lip children th li e . A well, in m r f1 ti en t u d id f 11 ti n ' and tr phi f m h w p par nt t k in baring I int rpr t d it a a wa w re to th ir par nt and h w mu h j har with m a numb r har d with m pl tr a ur d. Par nt mpli h db th ir hildr n 57 I ial th e childr n ing part f th ir I n tic d th num r f times I had comment don par nts em ti ns b ing hared during th int rvi ws in th [! rms of laughter and tears. Thi motional haring wa n t in the foregr und wh n tran cribing strictly verbal data from the intervi w . With consent of the participant , all intervie\ s were audio taped and transcribed verbatim after the interview. Participant were told that if they were quoted in the study that they would be quoted as close to verbatim as possible. Parents ' language would only be "tidied up" if there were repetitions, digressions, pauses, ' hmmms" and the like, where it might be difficult to grasp when presented in a written form . At all times their anonymity was respected by assigning codes to each participant so that their statements could not be identified. As well, all children in this study were referred to as male to further enhance the anonymity of the parents even though one adult child with Down syndrome was a female. In the actual quotes used in writing up thi thesis the adult children with Down syndrome were referred to either as "my son" or with a " the words "my son" did not fit into the context of the quote. " if P r nt Appr iati n Data Analysis am in d a a wh 1 during th anal i t xt a a wh 1 . I r ad all th tran ri pt t g th r f th int rvi w . l gan by t n tran ript wa r all f the initial int rvi w w r c t d and th n tran crib d. diffi r nt part and p cific f a h int rvi w and tri d t d v 1 p meamng . ut of th whole int rvie\ pr d until hen I w nt a t int rpr tation th part w r again r lat d t the wh 1 . and diffi r nt part he f int rvi w were read thr ugh n after another several time . • Once I had read all the transcripts cat gori meanmg w re summarized in each transcript/unit; a synopsi of each intervie\ ' set of categorie wa typed up with a number of different categorie identified in each separate interview. • Once I had categories fore ery interview, I went through and identified reoccurring categories in each interview. I then returned and went through all the interviews looking for how those categories fit into themes, comparing, looking for patterns and groupings of meanings. Themes were developed encompassing all of the interviews and reviewing all the categories I had identified in each interview. I used what van Manen (1997) calls the selective or highlighting approach. The text was read several times and then I asked," What statements, phrases, seem particularly es entia! or revealing about the phenomenon or experience being described?"(p.93) This statement was then highlighted. ventually my categories started to make more n ibl patt m · th m a m re • The w re a tart d t app ar and a I r gr r nt Appr iati n d the th m m d int n hr n u wh 1 . c nd int rvi w wa u d t clari d t li t n t the th m and alidat m data anal 1 . h par nt m u with and th f n er ati n n. h I had fr m th ir fir t int rvi ew that I th ught 1t int th th m di di torti n or art I had ch ing, cl ri ing, n ting an agg rati n ace pt ing r r futin g m pr limin ry th matic analy is. I then made correcti n wh n nece ary . Th articipant w r n v r involved in the analyzing of actual text. Guba and L ine ln ( 19 9) tate that thi i ne method for achieving credibility b checking with tho e interviewed t confirm the re earcher' s construction of their multiple realities. The econd interview was u ed for further conversatio~ consultation, and validation of the first intervi ew. Taylor and Bogdan (1984) state that for a study to be valid there need to be a close fit between the data and what people actually say . It was important to be clear in the second interview that what I had come up with as themes for parent appreciation, is what parents involved in this study actually appreciated. • To ensure soundness of the data throughout the research process I kept the lines of communication open between interviews. When necessary, I contacted the participants, in person or over the phone, to stay clear about and validate what I was doing. I then brought my results before my thesis committee for review. Change and adjustments were made according to the feedback received. • The final research report was developed . Par nt Appr iati n Trustworthiness: Credibility. Dep ndability and Confirmability uba and inc ln (1 tru tworthin h id ntifi d maj r rit ria£ r judging th f finding that m rg wh n r inquiry . Alth ugh naturali tic inquiry i ar h r u e naturali tic£ rm f ry diffi r nt fr m rati nali ti inquiry, uba and incoln ha e c m up with anal g u t rm that uppl nt th rati nali tic t rm int mal validity reliability and bj cti i Cr d.ibility r plac f p. 24 ). int mal validity and tand £ r wh ther the participant £ und my analysi , formulati nand int rpr tati n cr d.ibl study by u ing th participant a co-anal r dibility wa e ta li hed in thi s t . Dependability replace reliability and thi was accomplished in one way as I kept an audit trail which outlined all the methodological steps and decision points in the research study. As well, I was open to my thesi committee accessing any of the data including memos, notes and any documentary material used in the research. Since the research committee was acting in an advisory capacity, they were allowed to view the documentation if they chose to do so. No one else was permitted access to the raw research data. Confmnability replaces objectivity and as the researcher I continually tested to see if the study remained credible by consulting with my advisors to keep me honest, by cross checking data and by participant checks. The field notes, a reflective journal, a list of assumptions about the research context, and participants as co-analyst helped me keep this research confirmable. ar nt Appr iati n Int rvi wing pr c 1n c mb r 1 North m Briti h fr m th d d only u n r c ipt f thic appr a ulty fR lum ia thic ar hand al whi h wa grant d tudi , m r ity f mmitt All f the participant agr t arti ipat in th assur d of confid ntiality and that all audi ta when not in use. I incticat d t raduat 1 tud . ach partici ant was and c ding infi rmati n wa s cur d ach participant that nc the thesi was compl ted and defend d that all the raw data would b d tro ed and a final c py of the thesi would be made availabl to them. The following chapter present the o1ce of parent appreciating their adult children with Down syndrome that emerged from our conversations together in this research inquiry. ti n Par nt Appr 2 hapt r 4 Pres ntation of th Thi in xpenence tigati n conv r ation to pr id gan with m wi h t ngag par nt in appr ciati th r m aning t what it might b lik t parent a child with Down yndrome from birth t adulth d. dat , heard in the acad mic and pr :fl ionallit rature and really understand what is invol d. Voic f par nt hav ldom been t parents are th p opl wh fthe e parent will n w be presented. By choosing an appreciative len , asking que tions, engaging in conver ations and then analyzing the transcribed conversations, I acknowledge that I am a part of the e constructions of appreciation I now present. This study was not a case of discovering appreciation, but rather by engaging parents in conversations about appreciation, the participants and I actively constructed these meanings of appreciation together. Although appreciation was our focus for this study, parents did talk about their struggles and worries raising this child. It is not my intention with this study to deny these issues and I will address some of the parents' main struggles in a section on caregiving. It is ludicrous to think that parents would only share appreciation for their experiences, because parenting, regardless of the child, is fraught with challenges. Sharing some of their major concerns in raising a child with Down syndrome creates a fuller picture and provides options for further studies with parents. Par nt A ppr iati n T hemes gan Th proc r and rand pulling ut at g ri c n r ation o th m . In the nd, I cam up with thr th m most appreciat d ab ut haring th ir li m r a ding th tran cript of th that I th ught har d what th e par nt with a child with to adulthood. The fir t th me did n t addr ifi e Instead it looked at what I aw a c n i t nt r n becoming aware the had gi en birth t a child with became aware hi !her child had b ntuall tum d int that I wn n nc ndr me fr m irth par nt appreciat d. from th e parent up n wn n labeled with D wn ndr m . nee each parent ndrome, they appeared to go through a process a reconstructing of meaning in order to accept thi child. ach parent went through this acceptance proce s each in his/her way and in some way said " yes" to this child. The second theme looked at experiences parents appreciated regarding their child with Down syndrome as a teacher. Parents repeatedly shared how their children taught them so much about themselves, life and the world. The final theme looked at caregiving and what experiences parents appreciated about that role involved in raising their child with Down syndrome. Awareness and Acceptance - A Reconstruction Process As I repeatedly reviewed the transcripts, I began to see a number of consistent responses from parents that occurred after the birth of their child with Down syndrome. These responses appeared to involve a letting go of the " perfect" or " normal" child concepts and reconstructing new meanings around thi child and parenting this child. Par nt Appr iati n 64 In th literature r i wand th tran cript , par nt r peat dl talked ab ut th id as of the al rfl ct child r th n rmal hild . ha Down yndr m newb m child i 1 1991) auth r f u [! r b ing t ld your m King l and e itz, 1 4 . 1). Mari I n rainer mmon and m th r fa child with state , Wh n I fir t 1 am d that ur bab that r wn yndr m , dimpl d infant, wa r tard d I almo t died of agony . The d ct r \ r wr ng... ur child with Down on i an auth r and itz v h tat than p rfl rffi r n ar ara n c uldn t be what th y said, a ndrome (p.37 . With the concept of the p rfl ct or normal child g ne, parents in this study appeared to begin their own form of recon truction to s mehow fit thi child with Down syndrome into their worlds. In thi reconstruction process I saw consistent responses from parents as they reworked the idea of parenting somehow coming to accept this child with Down syndrome whose label was dominantly constructed to mean so much about difficulties and burden. A Comparison I came across a pamphlet with Emily Kingsley ' s Welcome to Holland, a mother's short story that compares the experiences of raising a child labeled with a disability to planning a fabulous vacation trip to Italy. I want to share a short, edited version of this story because the comparison she uses works so well to illustrate the consistent responses parents in this study had to the news that their child had Down syndrome. Kingsley's comparison begins with you imagining that you are planning a fabulous vacation trip to Italy. After months of eager anticipation and preparation, the plane Par nt Appreciati n amv and awa y u g . Holland. (A war n - thi par nt i t ld hi /h r hild ha you hadn t planned t g t H lland. All But ther ur lifl ) " W lc m t wn yndr m I w ver u had dr am d f g ing t Italy. been a chang in flight plan and th plan land d in H lland and th r you must tay. o y u must g (Proce ann un e eral h ur lat r th 65 ut and u n w guid b k and 1 am a wh le new language. f acceptanc b gin a par nt tart t r c n truct id a Holland i ju t a diffl rent place ha e been there for a while l w r pac d and le u catch ur br ath, n par nting.) fla hy than Italy and after you u 1 k ar und. Y u begin to notice Holland ha windmill , tulip , and e en R mbrandt . If you pend y ur life mourning the fact that you didn t get to Italy, you may never be fr e to enjoy the very special things about Holland. (This parent now has constructed some new meanings; he/she is accepting and appreciating this child with Down syndrome for who he/she is.) Awareness Awareness that a child has Down syndrome appeared to come for most parents shortly after the birth of their child. (However, one mother in the study did not learn her son had Down syndrome until four months after his birth, and another mother found out several weeks later.) Parents expressed many strong feelings and stated they had a real lack of knowledge about the label Down syndrome. Marilyn Trainer (1991) an author and mother of a child with Down syndrome writes about the powerful feelings she experienced when she and her husband became aware that their fourth child had Down syndrome. Trainer aid that two feelings were very strong for her - that of unmitigated responsibility and helple ne s, exactly how sh ar nt Appreciati n felt facing rai ing h r n w child with wn to d anything~ r went thr ugh~ ling m n he did n t want th npr par d and on th brink f d patr re p n ibility f rai ing thi littl bab h lple ndr m . he judg d m r h lple f angui h, ~ ar, guilt and ham a than h r elf. h he D It ay h he fac d ha ing a child la led with Down yndrom Par nt in thi tud talk d a ut m1ng a war that their child had wn yndrome, the fl ling the had and th n t kn wing what that m ant~ r them r their child. At thi point there wa no eel brating, n appr ciating n c nver ati n about joy. With the birth of a child with D wn ndrome into a w rld that ha dominantly constructed Down yndrome to mean abnormal, unhealthy and mentally challenged, these parents did not feel appreciative : It's very difficult to realize you have a handicapped child. It is a disappointment. I mean you expect so much from your offspring to be able to make a little mark for themselves in the world ... and you wish you had the perfect child. **** You first start off thinking this is a burden and it's a life time burden, its not one that's at the age of 18 going to move on. **** When they broke the news that our son had Down syndrome I asked, ' Well how handicapped will he be? How retarded is he going to be? ... As with any child you expect this perfect little child who will come out and ay, ' Hi, here I am world, I'm perfect, and I'm going to take it on.' And with our son, I lo tit. Par nt 'Appr iati n 7 **** I wast rrifi d and I wa ign rant a all g t ut. I wa 1 t ab ut handicap . I'd n v r actually b n in c nta t with an n with an kind f handicap. **** I ne er n er h ard fa mentall r tard d r n until ( ur n) wa b m . I didn t know what it m ant. **** I couldn't believe that h wa born v.-1th 'Well i there omething own syndr me . I went to the doctor, u can do about thi ?' That In these description parent appeared to ha how naive I was. no id a what having a child with Down syndrome might mean. They talked about disappointment, terror, still wishing for the perfect child, about wanting to do something to change the circum tances, not wanting to acknowledge that this child was different from what they had planned. The moment when parents became aware that their child had Down syndrome appeared to be a time of immense confusion and feelings, a time of questioning, a time of letting go and los ~. Parents at this point appeared to have to begin to negotiate new meanings that worked for them in this situation. Their given accounts of the world around parenting and having the normal child or the perfect child were no longer viable, therefore not sustainable. According to constructionist theory, meanings are continually negotiable until we find something that works for us. Now that they had a child with Down syndrome, parents in this study appeared to go through a process of reconstructing, of accepting finding different meanings that worked. Par nt Appre iati n Acceptanc rom th par nt f thi mak p ace with r c nt nt n tud it m a ituati n t lf with n a child that hi t ricall and ulturall ptanc m an t g with li[i , and a " t and ackn wl dg ha n t b n warm] w I med. hi d finiti n agree with theW rldWid W b t r di ti nary r ad r d finiti n which tate acceptance m an to rec iv willing! admittanc describ d her 1 tting g or t gi r appr al t . A par nt f th id a f normal, ackn wl dging that h r child with D wn syndrome wa differ nt and tating her p ctati n a a par nt needed to be r vamped (recon tructed) : All the expectations you have for thi normal child g out the window. You have to totally revamp .... So the hopes and dreams you have of your son going on to do this, you don t have that any more. o you have to totally restructure your thoughts about how you are going to look at this kid, you know as a life time thing. Another parent shared how her conceptions of parenting the perfect child had to change as she acknowledged and accepted her child with Down syndrome. This mother shared how important acceptance was to her: You have to take your own ideals of what you thought life was going to be, this perfect child you're going to have and you didn' t and all of a sudden you' ve got one you've got to change your ideals on, ... y u have to learn to accept thi .... It' s one of the very first rules really because if you don' t accept your own child, you don't accept him for who he or she is ... nothing will mean anything. ar nt 'Appr ciati n Anoth r par nt gav an e ampl yndr m for h r f how ace pting h r he c uld appr ciat him j u t a h wa . n with D wn ndr m t b n rmal b cau yndr m i part fwh h i . na m h talk d a b ing a n with 9 wn ut n 1 ng r wishing r n with wn eing n nnal i no l ng r art fth t rm orb rm that ar important to her in relati n hip t him. he ha neg tiated n w m aning : If om bod could c m and make rum, a th a n rmal, r n t syndrome an more I w uldn' t want it becau e I think m wn n 1 very happy with his life and I m certainly happ with him and if h wasn t Down syndrome, it wouldn t be him. Like it would just, itju t, it wouldn t be him anymore. It would be somebody totally different and that not what I want. I love him because of who he is and I don't want to change that. A mother shared a new and different meaning of the word perfect. In thi s new meaning or reconstructing of the concept perfect she states how she no longer saw imperfection but saw Down syndrome as a part of him and a part of her new version of perfect. She no longer wanted to change him and now accepted him as he was: They will bring joy to your life and that' s really hard to see when you have thi s imperfect child. It' s not that he ' s not perfect because he is perfect. But he i perfect because he is _ _, he' s perfect because he has Down's and that's what he is perfect in. I wouldn' t change it, I wouldn' t change having ------ as I said it would be a void without him .... Because I've learned to accept him, I've learned to accept me ... as much as I never would have aid this when he was born, I wouldn't change having him. ar nt Appre iati n 70 ther par nt talk dab ut ace ptanc and appr ciati n fi r thi child in th ir liv . Acceptanc cam up rand r again. Ac ptan appear d t b part f rew rking th meaning of par nting and ha ing childr n and th n appr iating th new con truction : I think that th end re ult if u an thatj fwher ur child i , to ace pt him r h r y u kn w a their wn indi idual p rs nand t ac ept their limitations and t r v 1 in th gr wth that th ee in their lifi . Acceptance - Uniqueness of the Proc ss In the many conv r ation that I hared with parent the concept of acceptance were similar and yet parents' exp rience were unique. T\ o participants described having experiences where they could remember consciously hifting from denial and wishing for a normal child to accepting their child with Down syndrome, they described it wa a precise moment in time when they made a conscious decision to accept this child. One mother said that she did not find out that her baby had Down syndrome until her baby was four months old. She said that this was her first baby and that she was quite young and inexperienced and therefore treated this baby with Down syndrome a if he was normal. When she found out that he had Down syndrome, for her, he was already a little person with a personality all his own, her chilcL and he had no other label. When she was told he had Down syndrome she remembered feeling upset and that she didn' t know what to do. Then about ten days later she woke up one night and very clearly remembers a "moment of revelation", where he asked herself the que tion, "Why am I feeling so sorry for myself?" At thi point he aid she made a consciou choice to focu Par nt Appr iati n n h r child and ace pt whate r wa to c m . In thi m m nt f r 71 lati n thi mother appeared t accept h r child with D wn yndr m . A econd m th r t ld h r t ry a h r memb r d it. he aid that h wa hom al ne itting in th li ing r m with h r ix-m nth- ld ba crib. hining brightl int th r h rem mb r the un wa y I eping in hi m and h r mind wa full of all the terribl pr gno e th d ct r had gi n her a had cried for month and that h had nl ne wi h and that wi h wa for her child to be normal. uddenl h ut her cl n. he explain d h w he aid thi inde cribable feeling came over her. h described it a a moment of re ignation and peace , a letting go, and an acceptance. he decided at that moment that he would accept hers n. These two mother were the only two that talked about a specific moment in time where they consciously chose to acknowledge this child as a child with Down syndrome, a child not considered normal, and accept him and all the experiences that life would bring as a result. Other parents talked about the amount of time it took them to accept their child. The time frames they described ranged from almost immediately after birth to what one parent described as "a long time". One couple described their process of acceptance as almost immediate: A day after the birth I went to my wife, she said I know about this and he's ours and we just have to do our best. Well right then my strength changed a lot ... she was the rock but it didn't take much time at all to realize that this wa my child. This father talked about how quickly both he and his wife acknowledged that thi baby was their child and they would do their best. The circum tance this couple faced were Parent Appr ciati n 72 n wa b m with wn difti r nt than th r parti ipant in that right fr m th tim th ir yndr m hi urvi al w thr at n db cau e f c ng nital defl ct . har d h w th ir urn tanc sputa wh 1 diffl r nt p r p ctiv ace ptanc wa p diti u fl r th m to urvi philo . T thi da th a th au ha h y n thing and h w inv lved in their n' truggl maintain d an ' accept it v r u fix it" phy . An th r s t of par nt talk d ab ut h w the id a f ackn wl dging their s n wa differ nt and ace pting him came fairl easil t them becau e one they became aware h had Down ndrome th Father: He just got on with it : obviously different from the normal child ... but it has never bothered me and I don t believe it ever bothered my wife. Mother: First accept .... He was our child and he was going to be brought up. For other parents, their process of acceptance seemed to transpire more slowly. Trainer ( 1991) suggests that when parents first find out that their child has Down syndrome they may develop another kind of syndrome whereby they repeat over and over ag~ "Why us? Why us? Why us?" (p.3) One mother in the study talked about this type of experience where she compared her process of acceptance to a grieving proce s. This process involved the letting go of the idea that her child wa going to be born and be a certain way in the world, a reconstructing or negotiating of new meanings. She described this process: The first two months, I don't remember but they go in a blur because you' re still accepting this, the 'Why me God' type of idea. And it take a long tim t get Par nt 'Appr ciation ov r that, a 1 ng tim . It lik ha ing ad ath, and th r cov ry th e ample h ga u g thr ugh th gri ving and am thing .... but th fir t i m nth i t ugh it of thi pr c ery t ugh. face ptance a " a gradual pr c Another moth r d crib d h r pr 7 '. An wa h w h did n t t ll h r th r childr n £i r th fir t thr e year after having her bab with vm ndr me a as normal. Wh n he finally t ld th m th h want d th m t tr at him urpri d. H w v r, sh said that her on with Down syndrom wa alr ad an ace pted part f the family for wh he wa a a person and o there were fl w reaction to the lab 1 wn ndr me. In my conversations with parent , it was apparent that appreciating th ir child was not something that just happened. When parent fir t became aware of their child having Down syndrome there were many feeling , many wi hful thoughts that their child could somehow be normal or perfect once again. However, upon realizing that there was no trading their child in for a normal version, the renegotiating of meanings began around that child and themselves as parents and accepting this child. This was not a clear-cut process as real life experiences are often blurred and intertwined. However, similar and consistent patterns of responding appeared to emerge and each parent in this study, in their own unique way said "yes" and eventually accepted his/her child with Down syndrome, they no longer wanted to change him, or trade him in for normal. This acceptance proces , this reconstructing process, is part of our constructions of appreciation in this study. Consistently the parents in this study 1 t go of the concept of the perfect or normal child and said ''yes" to this child and accepted this child, who Par nt Appr ciati n within dominant con tructi n i c n id r d a n rmal and di abl d. thi proc f r c n tructing And now I fa c pting wh n h rt f g w 11 m n par nt urn up tate : n will fit wh r h fit . I I am d t r adapt and r focu and r chang and ju t 1 kat h w h ha gr wn and wh r he fitting int 74 n w o i ty . Child as Teacher The second and third th me in thi tud l ok at xpenence parent talked about appreciating ha ing hared their li e with thi child with wn syndr me from their birth through t adulthood. R peatedly, in interview after interview, parent talked about appreciating what their children with Down syndrome had taught them about life, about themselves, and about the world. Parent talked about how much they had learned. Parents' dreams and expectations shifted as their children grew and became an integral part of their lives. Acknowledging and accepting their child with Down syndrome and watching this child grow and develop was a learning experience for all the participants in this study. Having a child with Down syndrome somehow seemed to enlighten, illuminate, or teach things that these parents might not have experienced if their child did not have Down syndrome. This theme of "child as teacher" is not aimed at sentimentalizing or as Marilyn Trainer (1991) would say "adorning (them) with a mantle of the supematural"(p.64). People with Down syndrome are not " mongoloid idiots" and neither are they "angels". However, to these parent their children with Down syndrome were and still are teachers. The e parents appr ciate what these children have taught them or are in the proce s of teaching them. Par nt Appr ciati n 75 Learning on a Deeper Level v ry child, ry p r on 1 at ach r in hi /h r wn way. A human b ing w 1 am and con truct ur m aning t g th r in c ntact with ach th r. Parent in thi tud talked ab ut h w mu h th y ap r ciat d 1 arning thing that th y might n t hav learn d had their child b n om n rmal. taught th tn in way th y had n t parenting her child with D wn om h w thi child with p ct d. A m th r c mpar d h r ndrom t th and hare how every child ha taught her wn ndr me perience of peri nee of par nting her oth r children mething but her on with Down syndrome has taught her mor at a ' deeper level ': He 's taught me lot . I've taught him lots but he's also taught me more ... You will learn something from his downfall , you will learn from his joys, you will learn from everything but at a greater scale than you wouJd from a normal child .... You learn all the way through his life and I'll continue to learn ... .I think every child teaches you something and he has just taught me more on a deeper level than my other kids have. One might wonder what this mother meant by "more on a deeper level" and she goes on to share what "deeper" meant for her: He's taught me, I think humility. I mean he's taught me all the basics that we tend not to learn .... He's taught me patience and he's taught me just acceptance of people .... You learn to be humble about things because you learn to take the stares and you learn to take the questions that other people have fyou .... He's really taught me that, patience ... .I've learned to be more patient with him becau e ar nt Appr ciati n I ha t be .... h You e thing taught met lo kat liD differ ntl , ery, u w uldn t eD r . (M ther tart t hen r aw h appr ach exp n need with h r child with wn li ry diffl r ntly. ry her ). I with thi child and he ee Thi mother ugge ted that h ha learned at a deep r l thing 7 diffi r ntl cau ndr m . The diffi r nc f what h has in th wa h 1 k , how h 1 am , and how he int ract with th r , thi moth r ugg ts, ha e all b en opportunitie for her to learn a out humility pati nee, and acceptance f th r . It app ared that she felt very tr ngl ab ut what h wa aying. Her words, her tears, the tone of her voice, her having to top and t take several deep reaths suggested that this mother had trong feelings of appreciation for the experiences her on had brought into her life. The lessons he taught her at a deep level were al uable to her in her life now and her constructions of the world were different as a result of having this child with Down syndrome in her life. Acceptance of Others Many parents talked about how they watched their children with Down syndrome openly accept others without judgement. Parents commented on how their children with Down syndrome did not seem to use the same criteria for judging other a many of the normal population might: You know we cannot just accept people. My son doesn ' t have that. He doe accept everybody. Like it's so different for him, to look at a per on and he ju t accepts them for who they are and the general p pulation d esn' t do that. He does. So he's taught me that. Par nt Appreciati n A 'r warding exp ri n ace ptanc wa fa woman wh bar d by a c upl a they witn fa had b n n 77 d th irs n ' r ady carr d and di figured fr m burn . Hi r acti n was quit diffi r nt fr m their initial r acti n . They n ticed and appreciated hi acceptance: Mother: ne thing that \ a reall r warding fl r me ... fl r all of u wa wh n ... th lad \ h w rk d with th m had been r ly burned in a r ally bad fire .... Th n thi opp rtunity cam up t work with ( ur son) ... and that was the first time he actuall had com him and at th ut in the public eye.... he wa incredible with am time it h lped her. .. I can rememb r the fir t time I looked at her. It was all I could do to look at her face it wa ju t Father: It was hard. She was really badly burned. Mother: And then the more you got to know her you didn ' t see the physical anymore. It was the total personality . Father: I'm convinced that our son in the beginning didn't see the physical. Mother: No he didn' t. Father: ... to our son she was just another person .. . he has been always a very compassionate, loving person ... .He has a warmth about him that is rather special, I think ... he treated her like anyone else. There wasn' t the staring, there wasn't the questions. Mother: No he never stared at her. He never really asked her que tion because (Mary) was (Mary) and (Mary) wa fun .. . And that wa all (our on) aw. Par nt Appr ciation Thi r ady acceptance of th r r gardle parent appreciat d. n a h liday difference in col ur: 'H y the ai~ ' h tr s med t b a 1 n m ther n tic d h w h r e pe pl ar black. nth s n r p nd d t a I n ticed the difference and very accepting. It didn t make an dif[i rene t him. He didn t car about that. " Or an ther moth r wh wa aware h w h r th f diftl rene 78 n re p nd d to p ople a king for help on t: Weoft nsa and and such and uch and judge them before we even know. o I think he ha a lot of compa sion for people. And ven for going downtown. If he see omebody there with a hat or a hand out or whatever, he always reaches into hi wallet and gives him or her something. Experiencing life with a child with Down syndrome appeared to give parents and siblings many opportunities to learn about becoming more accepting of other people' s differences themselves because of the differences in their child: I never had an understanding. I remember as a child though ... I teased people that were handicapped when you ' re in groups where you stared or whatever, so he ' s been good for me in that respect. A father shared: It's been rather enlightening and it gave me a greater appreciation for those people that are this way. You know I expect I always kind of would look over my shoulder if I saw someone go by like that. But now, heck, they all call me by my first name ... .I feel that's an achievement that I've been abl to exp rienc whereas I wouldn't of, if I hadn't had a Down syndrome child. Par nt Appreciati n In con 79 r ation one m th r talked a out her lib and h w h appr ciat d her hift from what h con id r d lfi hn ex:p rienced lib with h r on . hr ugh h r and pride, t one f m r humility a n n e with h r he n, h 1 am d to be mor accepting of th r and th ir dif£ r nc I d n t think I' d be the p r n I am t da . I think I'd b c rtainly am mor humbl . elfi hand I ur n wa b m I wa quit proud f my elf, thinking that a 1 t f thing I did w r u ri r to other pe pie ... and he ju t let me see that. .. e erybody i the arne and nobody i sup rior to anyb dy else and then I saw p opl in a different way, I could see ort of wh re they cam from, I wasn't so judgmental about them ... what they could and couldn ' t do, or how they dressed or how they didn ' t dress or how they looked or how they talked. Parents noticed that their other children' s acceptance level of others' differences shifted because of the presence of a sibling with Down syndrome. Thi mother shared how she appreciated that her other children had had an opportunity to learn: He benefited my own kids in the way that they have a better understanding. They have more compassion towards any sort of handicapped person or anyone ... .I've never had to say much because he was just part of the family and was treated very equal ... .There was never any embarras ment. ... They all feel like me, we're so lucky to have him. Somehow having a child with Down syndrome appeared to affect how parent and sometimes how whole families experi need thems lve in the world. In my conversations with parents they talked about how much they appreciated th shift . Par nt Appr ciation A parent xperi nc d life with their child in a w rld full fjudg ment , they ugg t d that they found th m 1 e and at tim th ir th r hildren, b c ming 1 about oth r and mor ace pting f diffi r nee b cau child with 80 f their pen nc judgmental with their own yndr me. Acceptance of Self Ace ptanc of other wa n t the nl type f acceptanc that parent talk d about appreciating. ne m th r d cri ed her nand gave a picture of hi elf- acceptance: He i proud of who he i . He doe n' t want to be like other people, whether others consider him too short or too fat or whatever he is, he doesn't even think about being different, or to be like other people are or look like them ... our society today is too self conscious of how they look or who they want to be like in tead of being proud of being who they are. And so I think that's a good lesson to learn from my son .... He is never trying to be anybody else or look like anybody else. He likes to look neat and tidy but he is always proud of who he is ... .He is never afraid to dance by himself or sing as loud as he can. A lot of people are afraid to do these things .... And he doesn't think what anybody else is thinking around him or looking at him ... but he loves to do those things and he does them . And I think we have to learn a lesson from that. That we shouldn't always think what other people do or think of us when we do things but do them if we feel it in our hearts that that's the right thing to do and that' what we want to do, we h uld do it. Par nt Appreciation Wong and McKe n (19 8) tat that' it i rar to nc unt r p hav achi d uch a omfortabl from low lf-e teem (p.5 . A I r ad a c ptanc , h app ar d t ha tat ple wh appear t f b ing. M r c mm nl , peopl r thi m th r enc unt r d m thing a He did n t worry ab ut oth r judgem nt h just mt d cription f her ut her 1 n that wa uffi r n rare '. em d t lik b ing him elf. Anoth r par nt aid he 1 am d t accept h r lf through her child with Downs ndr m , "My son taught me how t accept m elf. .. he' taught me how to b accepting of me and how I look at things and of j u t who I am. Distinguishing Characteristics Parent shared how they appreciated their children with Down syndrome as they learned from them as they watched their children experience the world. There were different characteristics that parents respected in their children with Down syndrome. Each child had different ways of teaching and yet parents talked about learning and seeing things they might not have seen had their child not had Down syndrome. Parents talked about learning about forgiveness, new dimensions to loving, taking time to stop and smell the roses, determination and pride in accomplishments, and improving family dynamics. These characteristics that they saw in their children taught them something about life and about the way they viewed the world. Forgiving and Loving Some parents appreciated the forgiving natures of their children; "He is alway ready to say I'm sorry. And I think that teaches u ale on in forgivene s"· "He doe n' t hold grudges or resentments. He's very, very forgiving ." All of the parent talked about Par nt Appreciati n th ir childr n' lo ing natur ' H bring us an awful I t f 1 e. H i full f I ju t lo th famil and family cca 1 n . al o gi an awful! t of lo very ea y. Hew 'M n r p nd t 1 ur n in him elf ha ur nd bad thing in p pi · ' He 1 ok on th bright id He love everything. brought to their li n t ha n m an n in hi fe . "H ) do nth .... H uch a I ing di p iti n .... He s easy g ing lik an thing went.. .h ju t nJ j u t o ea y · ' 2 d d ing verything, d .... H doe n ' t 1o k at th rything. He s uch an ptimi t. On moth r hared her th ughts on th 1 ving their son had s: We didn t know what love wa until he came into our lives. My husband once said it's a whole new dimension. And I think it's becau e you really discover what love is. Stopping to Smell the Roses A common complaint today in our society is that people ' s lives seem so bu y that often the everyday things go unnoticed. There is a phrase coined in our society that describes a busy lifestyle, people not taking time to "stop and smell the roses". The following conversation tells one mother' s story of the appreciation her son with Down syndrome has for those things considered ordinary by many people in our society and what it has taught this parent watching his appreciation of things others may often think of as mundane or inconsequential: He shows us h w great the gift of life is and that each day hould be lived to the fullest. .. just by the little things he appreciate . You know it do n' t matt r whether it's a cup of c ffee or going out with friend or all the kind of Par nt Appr iati n c 1 brati ns we ha lik birthda and anniv r ari .... H thing that ar in that mom nt. And an th r thing to thing ... .I think a lot f thing a I a y ur j b oth r pe pl thing ... .W m to enjoy the I think h h ws I ve for ou take[! r grant d. I m an your hou e, ur famii ... but I think we [! rget th mall hould b thankful [! r th m and I think that i what he i t lling me anywa . That w h uld b m r a war of th thing that w hav e pecially for family and friend . Marilyn Trainer (19 1) agree with thi mother as h watch d her son experience the world. he con iders her on with Down yndrome fortunate : He i lucky this little boy of mine. He will not conquer the world of the academic, the scientific, or the great doers. But he has a unique appreciation for those ordinary rites of life that seem only dull and jaded to the rest of us. (p. 38) In watching and relating with their children with Down syndrome, parents appeared to be aware that they wanted to take time, to stop, to appreciate the moment. Determination and Pride in Accomplishments In this busy, industrialized, highly technical world people will often look at how individuals with Down syndrome might take longer learning something or struggle more in attaining a certain skill and judge this to be negative. Yet several parents that were interviewed looked on these struggles and the determination with which they were met as something they appreciated and learned from. One father shared: I think the thing that stands out in my mind was the way he conquers thing . Th way he is able to put his mind to something and d it. And he doe it and he ar nt Appr ciation pro e t him lf and t u that he can d thing from an b dy el much i tak n-t r-grant d om thing. h ga n in h w ea y it may b t learn w r of thing lik tying ho , ating with a knife and fork, wtm.mmg kating, and 1 aming h w t d al with m n It alwa take wn with ut any help . A mother har d h w xampl n hi 84 and t ll time: ur on a lot 1 ng r t d , 1 arn thing ... .All those sort of things we tak for grant ditto k him 1 nger. But he did th m b cau e he wanted to do them and h mu t ha e kn wn h could do th m . And I think that helped u too in our daily live in om of the thing y u s rt of want to give up on ... you think oh I can t do that just let it go ... .I think that i one of hi big attributes is his determination to do things and he does them. **** He ' s made us appreciate the fact that he is handicapped and what he has been able to achieve. Another mother talked about learning to appreciate and enjoy her son ' s accomplishments even though she suggested the milestones in his life were smaller. Regardles of the size of his accomplishments she says she is learning to appreciate each step as he is teaching her something as she watches his process: So it's different. You take each day at a time. You know you look at the small steps that they make and you enjoy and have joy in those teps becau e they are smaller. ach little milestone in hi life will be small r, but it' maller in th overall picture, but it's a great step for him. And you hav to 1 am to enj y tho e Parent Appr ciation tep and ju t 1 ve him .. .. A much a you ar th r t teach him· he 5 th re to t ach you a well. amily Dynamics Par nt talk dab ut th influ nc that having had th ir child with D wn syndrome had had on their p r nalliv and what 1 aming th y had had in the experience as th y r lat d to one anoth rand a a family and th gratitud and appr ciation th y fi lt for the experience. Although the experienc wer sometime really tough, thi father sugge t that the e difficult time brought them t gether and broadened their lives a lot: Mother: And I think to have survived as a couple and as a family in the face of adversity and in the face of having to work at something Father: It's a good point. It s brought us together. Mother: It didn' t rip us or tear us apart. Father: But it's sure made us a hell of a lot stronger. .. he has brought us together. Sure it's made us go through tougher times but as a result of those tougher times it's broadened us a lot. This couple stated that their son with Down syndrome brought their family together and they imagined that they wouldn't be as close a family without him: I think we've been closer because of(our son) ... .It'sju tall the family, you know like they want to do things for (him). And they just all love him .... You know at our age most of them would be into something entirely different but they want to stay close. Par nt Appreciati n A teacher i r cognition by omeon people oft n equat with ch ci ty. H w lev 1 of int lligence t b a g He i a bl r on parent chall ng th id a that and orne rt of u ne d a c rtain d teacher: mg. If th r wa any bl orne of the 1 degr 8 mg h i th gr at t bl mg. I think pe pl teach u a 1 t m r than an teacher ha ever taught. Looking back on th ir p n nc parents appr ciat d all that they had I am d. ach parent had had dif:D rent exp ri nc , yet fr quently many of the r pon es they shared were similar. The e par nts' storie came aero as genuine, raw and powerful. istening to their storie captured some deep, important challenge to some of the more dominant discourses about people with Down syndrome. lkins and Brown (1995) state that individuals with Down syndrome teach the rest of us how to cope, to grow, to overcome, and to understand humility, gratitude, and joy. By looking at parenting a child with Down syndrome from birth to adulthood through an appreciati e lens, parents in this study shared how much they had learned from these wise "teachers". Caregiver Appreciation Parents of a child with Down syndrome are faced with issues and challenges that are different from most other parents because they are rai ing children who often have intellectual delays or physical challenges. For the purpose of this study, I define thi different role by using the term "caregiver" or the act of"caregiving" which are common terms used with people who are responsible for others' care. Heller (1993) tates that "most families of persons with developmental disabilitie provide liD long family ba ed care for them"(p.22). he term "caregiver" that I u e in thi study, i ba ed on thi idea Par nt Appreciation of family-based care thr ugh a lifetime. Th t rm fit fi r thi par nt ar tudy a participating till r pon ibl b r th ir adult childr n with D wn yndr m . re pon ibilitie c ntinu d pit the fact that om how f ut f h m placem nt and n t er thes par n ar till acti I in h ir parental wn fth ir adult children with yndrome w r Ii ing away fr m h m in ' ut f h m placem nt . different in the e cas 87 h ir car 1 phy ically inv lv d, 1 din their childr n's car and in choice about their car . are giving t the par nt in thi s study had a vari ty of m aning and they described what appeared to be multiple, complex layer to their role as caregivers for their children from birth into adulthood. Talking to parents, it was evident that there were many experiences that parents appreciated about the role of caregiver through their children's lives. This became my third theme. For some parents caregiving was a total immersion in the care of their child. For these caregivers, caring had become the center of their lives at some point, and they derived great pleasure and meaning from their caregiving role, they appreciated all the satisfaction they took from caregiving. There were other parents who appreciated their caregiver roles, and yet care giving did not appear to be so all encompassing. Part of the caregiving role for most parents was becoming advocate for their children from birth, through school age and into adulthood. In this role as advocate, parents were involved in efforts to further their children's achievements and set goal . orne parents noticed that as their children got older, their advocate role changed. Not only were th y advocate in their adult lives for employment opp rtunities, training, etc., but th y became educating Parent Appreciati n advocat , haring th ir knowl dg and appr ciati n fi r their child with wn yndr me f childr n with D wn yndr me. Al ng with thi r 1 f caregiver a with oth r par nt adv cate cam the r ward , the appr ciati n that parent fi lt when they realized that their ad ocating their hard w rk, had help d th ir child with thing the ne children b ucc r thought p wn yndrome achiev ible. Parent r all appr ciat db ing able t e their ful in thi w rld. efore I go on t d cribe appreciation ab ut caregiving, I want to addre the struggle of caregiving b cause truggle did come up in conv rsations despite our focus on constructing appreciation. here are many challenges parents face a long-term, lifelong caregivers. To deny the e difficultie would be similar to denying that there are things parents appreciate about caregiving. Caregiver Struggles As we shared conversations, parents discussed some of the problems they faced parenting a child with Down syndrome. There were many obstacles, challenges, fears and disappointments as well as joys, rewards, and appreciations. One of the difficulties that one couple talked about was their child' s struggles with speech and motor coordination and how difficult it was for them not to be able to do anything: I know its hard, but you have to sit back sometimes and swallow and say, ' Well you know so you know he might not be able to do thi or he might not be able to do that but he is going to be able to do this' .... We had a person who was am iable and wonderful who you could take anywh re but who had a lot of speech problems, who was dif tcult to under tand and we had a hard tim communicating Parent Appreciation and a hard time with mot r coordination ... m rt f th n gati For 89 on ha limit d ability ... tho e are thing but they r th fact . m par nt th r app ar d to till b a 1 nging fl r what the c n idered to beth n rmal child. Ther wa a n that th ir child wa reall mi ing s m thing by not b ing normal, n t b ing abl t d \ hat th capabl of doing. Th s phra c id r d th r p ple hi age were fr m tw djf'fi r nt par nt describ thi cone pt, "Thi guy love hi sports o much he c uld exc l if he wa normal '; and: Thi i wh reI feel ery badly for my son, he will not have a family of his own ... .I can ay that I do envy people who have normal children his age because they have much more future than my son ever will. Another conflict for one couple was when their child moved out. They were ready and yet it was still difficult: When reality (their son moving) came it was a bit of a shock ... and I think to us the biggest adjustment. .. and I just think both of us thought. .. you're not staying home until you're 42 years old .... I think for a lot of people it is really hard to let go. One of the biggest worries for older caregivers was what would happen to their child with Down syndrome upon their deaths. Even when their child was no longer living in their home they worried about who would care for him as well a they would after they were gone; "I have one fear ... I hope in some ways my on goes before I do because I don' t want t go not knowing that he is lo ked after"; " What' bothering my Par nt Appreciation wifi and I right now r all 90 th fact that what' g ing to happ n to him when w are gone. How r n m ther bared h w truggl wer mi ed with appr ciati nand j h artach and difficulti s fi r her h appear d cl ar that fi r h r the joy have outweigh d h r burden: I think of all th things that I d t 11 n w par nt wh nth hav a child, is that they will bring pecial jo ... I mean there i a lot of hard work, a lot of heartache, a lot of you know mental abu that go s along with it in your life. But there will be joy and the jo will far out\veigh all there t. That there will be benefits and that's the parenting. Appreciating the Caregiving Role as a Purpose in Life and for Companionship The parents in this study for whom caregiving appeared all encompassing or the center of their lives suggested how care giving made their lives worthwhile. In some cases, the presence of an adult child with Down syndrome in the home provided parents with a clear purpose to keep going, to continue on, "my son set my life free ... I mean I couldn't bear it, separate me from my son and you'd destroy me"; "It gives me a reason to get up in the morning"; "You have a purpose if you have a child with Down syndrome"; "I did a lot with my son and I found it fascinating ... I didn't have a job so this became my purpose or my focus ... this became an enchantment for me ... that I had a focus I felt worthwhile"; and "You just can't sit down and die because w ve got ur son to keep us moving, keep us busy." These phrases sugge tju t h w important these childr n with Down syndrome are in the lives of some parent and h w much the parent appreciate Parent 'Appreciati n 92 how v rything chang d wh n her on got married and a third per on came int the picture. Her on was n 1 nger h r primary c mpanion becau e n w he had a wife: A littl lfi h part of m i we ha so much fun traveling together. .. and I kind fthought ... we 'r g nna t trav 1 th r t f ur liv and I'll take him and we ' ll have fun and ... .I wa quite happ about that and th n all of a udden I 1 t my travelling partner.. .you ha e thi 1 ng tenn rang and I thought he would sort of be with me forev r. Like wh nth oth r kid grew up and wer gone, it would be my son and I. I never envi ion d a third per on. Caregivers as Advocates Not all parents saw their child with Down syndrome a their " life's purpose" or as a companion into old age. As caregivers, parents saw their roles differently when it came to how much emphasis they put on caregiving as part of their lives and where their child fit into their lives as they got older. Some parents desired complete independent living situations for their adult children and had planned for independence from an early age. One parent said, "It was always detennined that our son would eventually not be living at home ... I think he enjoys the joys of independence"; another said, "He needs to be on his own." Regardless of the different amounts of emphasis parents put on their caregiving as part of their lives, or how much companionship they wanted in their live as they got older, one purpose that app ared to be common to all the parent in their roles a caregivers was that they became advocates for their childr n in on way or anoth r throughout their children's lives. ne parent put it very clearly, "You have to be an Parents'Appreciati n advocat . A paren de crib d the ad Down yndrom 93 ating th y did and till d for their child with word like supp rting d fi nding and prom ting came to mind. orne parent associated th ir adv eating fi r th ir children a part f th rea on their children w re able to ace mpli h thing th n ver thought po ible. appreciate their adv eating becau ofth part they fi It thi played in their children's succe s n par nt wa abl to de crib the differ nee for her and ace mplishrn nt . h e par nt appeared to between advocating for her child with Down yndr me and advocating for her other children. I get a en e that advocating in her caregiving role is different because of the amount of time and inten ity involved: You become an advocate for your child and I mean you always are regardless, but you' re far more so with a special needs child ... you have to be an advocate ... with school, you just basically have to really look out for him .. .. your role changes type idea ... you really have to go after what you want and what you think is good for your child because if you don the won't get it. .. .don' t be afraid to step in and stand up for him. The school system appeared to be a place that many parent became strong advocates for their children with Down syndrome. A hu band talked about hi wife and her role as an advocate for their son within the school system "She's worked harder than anybody I know who 's had Down syndrome children from the standpoint of studies, working hard to change the programs within the chool system.' Oth r parent talked about how having a child with Down syndr me has created experi nee wh re they had chosen to advocate for these children, som thing they might not have done if their Parent Appreciation 94 children had n thad D wn yndr me " I know as far a the education syst m goes, it made m get off my duff and confr nt thing I didn t like · and: I had to fight thr ugh th ch 1 tern [! r a 1 t of thing and that fight just sort of continu d nand on and n. Y u alway had t be hi advocate and be up there y u kn w I want thi and I want that. Advocating forth ir childr n m d to b m thing wher parent immer ed them lves when their children with Down syndrome went to school. However advocating forth ir children did n t stop when their children finished school. It was something described as continuing ' on and on and on." A mother shared how as her son ha gotten older she is now, " another advocate for him in where he ' ll go and what type of job he' ll have ... still looking out for him, directing him." Another mother talked about how the ways in which she advocated for her child changed as her child got older and graduated from high school. She now is advocating with, and educating other new parents by sharing her experiences as a parent of an adult with Down syndrome: The role changed and you became an educator ... you go out of your way to make a comment and comfort people, to educate them just about what Down syndrome i about and how well these kids do ... all of a sudden you' re an educator which is not a role that I would normally think of myself. .. you' re going to give them your advice ... because I appreciated when our son was little ... it's nice to relay sort of positive things and the special joys. Par nts 'Appreciation Now that her child wa an adult thi m ther want d t d th 95 arne for ther n w par nt that more xperi nc d par nt had d ne fi r h r when sh wa a n w par nt. h want d to focu on th joy and th po itive a a wa f comforting and letting them know that there are j y t parenting a child with ndr m and he appr ciat d being able to wn do thi for ther parent . Children' s Successes Interviewing parent for thi tudy with adult children with Down syndrome, many of these parent had faced difficult and very n gativ progno es from health professional upon the birth of their children with Down syndrome. In the past, even the best trained medical practitioners informed parent that their children with Down syndrome would never be able to walk, talk, dress themselves, have a single meaningful thought or even recognize their parents (Berube, 1996; Hunt, 1967; Kingsley & Levitz 1994; Williams, 1995). This was the case for many parents in this study. Some parents were encouraged to institutionalize their children, "The doctor wanted u to leave him there (hospital). And I couldn' t, I couldn' t leave him there"; "He was an idiot and should be put away and forgotten"; "It's your child and there is no way you' re going to put him away"; "There was no way that we were, I was going to let them put (our son) in anywhere. No way." One mother gave a clear example of how the proces of advocating for her son began right from the time he was born: My doctor wanted me to put him in an institution right away and that wa the last straw ... that enraged me and I became very reb lliou and I said well if it take Par nt Appreciati n 96 th la t br ath in my body he 11 get as far, he 11 be ace pt din ociety, and we'll bring him along a far as we can. After ad ocating :D r th ir child inc birth and battling the progno watching their childr n uc ed and a c mpli h thing th f th doctors, w uld never have imagined was som thing parent gain d a gr at d al of ati faction fr m. n moth r hared how she had b en an ad ocat for her on and w rked ery hard with him and so every accomplishment for him was 'a feather in h r cap as a caregiver. Watching her child accompli h a wide range of challenge , ga e her great atisfaction and fulfillment as a caregiver because of the effort he had put into her caregiving role: I remember just how rewarding ill accompli hments were ... .Every little accomplishment is absolutely huge, different than your other children that automatically do everything and that you work so hard towards, that he works so hard towards ... going through high school and then advancing to college and doing all the things that I probably never expected him to do .. . .I basically was told that he would probably never read and he wouldn't write and he wouldn't do all these things .. . everything was just exceeded, everything I thought would ever happen. And then I guess the last eventful thing was him getting married .... It was just perfect and probably something that I in all expectation probably didn't expect to happen ... you just keep getting the rewards year after year and you know it quite amazmg. Another parent stated to see her son "develop and grow and mature and be an activ part of society is really a plus for me. That' s really, that' s tom i r ally lik wow.' Parent Parent 'Appreciations 97 appeared to celebrat when they th ught their children with Down yndr me had succ ed d. One parent aid that h learned to appr ciat the mall accompli hments, "the small st ps they mak andy u njo and have joy in tho e tep ... littl mile ton . hi One of th e mil t n t r a fath r wa how happy and pr ud h wa for on when he graduated: The mo t IX> itiv time h had, them t e citing time h had has to have been his graduation .... They actually hav a videotape of the grad, which la ts about two and a half-hour . He play that con tantly, backwards, forwards, he knows everyone of the four hundred kids there and it was a real highlight for him ... .We were very proud of him. The caregiver role and all the different ways parents experienced it appeared to be a role that these parents appreciated as part of parenting a child with Down syndrome from birth to adulthood. For some parents this life long or long-term caregiving from birth through to adulthood and beyond appeared to create a sense of feeling needed. For some parents it provided a purpose for living, a reason to get up in the morning. For some parents it allowed for companionship. For all parents in this study caregiving involved advocating for their child and then experiencing pleasure and appreciation in seeing their children's accomplishments. Parent Appreciation 9 hapt r 1ve Summary of the Study Two primary pr mi of thi tudy hold that the way we conv r e with other a key factor in th mearung we con truct and that the meamng are c ntinually negotiabl . This res arch was about negotiating n w meanings and challenging the engrained patterns of language u ed in our cultur to describe D wn syndrome and parenting a child with D wn syndrome. After r viewing the development of biomedical, historical, and cultural forms of di course about Down yndrome and parenting a child with Down syndrome and judging them to be largely negatively skewed, I chose to have conversations with parents of adult children with Down syndrome that focused on experiences that they appreciated. I wanted to look at the assumptions that are takenfor-granted about Down syndrome and parenting a child with Down syndrome and open spaces for other ways of thinking. Drawing on these concepts from constructionist theory, nine parent participants and I constructed the findings in this study together. Through our conversations and research analysis, validated later by the participants, I came up with three central theme regarding experiences appreciated by parents of children with Down syndrome spanning the time from birth to adulthood. The first theme looked at what I saw as the reconstructing process parents appeared to go through after they became aware that their child has been labeled with Down syndrome. Upon being told their child had Down syndrome, parents struggled with inten e feeling , confu ion, and disb lief This wa not Parents' Appreciation 99 a joy filled celebration time for par nt where they immediately expressed appreciation for thi child with D wn yndrom . My conver ations about appreciati n could not have be n con tructed with th e parents at thi birthing time. However, a they began t acknowledg that this child wa not what they considered normal or perfect a th y had previou ly imagined, a proce or acceptanc b gan. Parent r Drr d to thi proce of reconstruction as "a gradual process", "totally revamp(ing)' , chang(ing) your idea on' "restructur(ing) your thoughts", "readapt(ing), refocu (ing), rechang(ing). ' Repeatedly parent talked about a process for them where they learned to accept this child with Down syndrome for who he/she was. The word "accept' appeared repeatedly as parents, each in their way, eventually said "yes" to this child. This process was different for each parent. Nonetheless, all of the participating parents consistently responded with descriptions of a process they went through in gradually accepting their child with Down syndrome. In the WorldWide Webster Dictionary the word appreciate means to grasp the nature, worth, quality or significance of, to judge with heightened perception or under tanding, and to recognize with gratitude. In order for parents to be thankful for or recognize the worth of their child with Down syndrome they appeared to have to let go of the concepts of the perfect or normal child and accept this different child, this child labeled with Down syndrome. Theme one looks at this process of acceptance, this reconstructing process. The second theme that was analyzed from these conversation concerned experiences parents appreciated describing their child with Down yndrom as a teacher. Parent Appreciation 100 Throughout the interviews, parents hared their appreciation forth ir children a teacher . Par nt used word like "I v I amed' thought "he how u ', "he turned my "he let m s e that" "he s taught us a I t "h ther t teach you", "you learn , ' h made u appr ciat ',"it been rath r enlightening , "I've been able to exp rience wherea I wouldn t of The par nt p k of h w their live had hifted because they took om thing from their exp ri nee with th ir children with Down syndrome and learned from them. Parents talked about learning more about humility, patience, loving compassion, forgiveness, valuing small things, optimism, acceptance of themselves and others, determination, kindness, family relationships, judgements, and selfishness. When people think of teachers, it is not likely that someone with Down syndrome comes to mind. Through these conversations with parents some distinct appreciative concepts of the experiences of parenting a child with Down syndrome from birth to adulthood have been constructed. The third theme focused on the role of caregiving and what parents appreciated about that role. For some parents the care was all encompassing and these caregivers shared that the care of their adult child with Down syndrome gave their lives meaning and purpose. As caregivers, some parents appreciated their adult children with Down syndrome remaining in the original family home because they were then companions for them. Parents also appreciated advocating for their children with Down yndrome as part of this caregiver role, and then watching their children succe d in areas they had oft n never dreamed of They appeared to appreciate different a p ct of their own hard work and how it was connected to their children's ace mpli hments. Parent 'Appreciation 101 The e thr th me fit t geth r t fonn n w meaning of appreciation about life with a child with Down yndrome fr m birth t adulthood. When childr n are born with Down yndrom par nt can gr w t ace pt th e children (Theme 1) and appreciate them in differ nt way . n f th way parent may appreciate th ir children with Down yndrome i a t acher (Th me 2) appreciating all the unique le ons in life that parent are expo ed to b cau e they ha e children with own yndrome. Another way parent may appreciate their children with Down syndrome i in their role as caregivers. (Theme 3) One f the bigg st differences in parenting children with Down syndrome may be the number of respon ibilities involved in rai ing this child and a great deal depends on the child's intellectual and physical development. Appreciation for the caregiver role fits with the first theme in that through acceptance of this child, parents are able to appreciate their role as caregiver even if it is over the long tenn. This long-tenn caregiver role is often viewed negatively because of the life long responsibilities that so often go with this role. This research is consistent with Van Riper' s (1999) findings to date that indicate "while the birth of a child with Down syndrome involves a ' change of plans' for families, it does not have to be a negative experience. In fact, for many families, it is a po itive, growth producing experience" (p.3). My fust theme about the process of acceptance or reconstructing fits with Van Riper' s idea of how the birth of a child with Down syndrome involves a "change of plans". As well, this study with parent shares how they view that process and what kinds of feelings and adjustments are involved in thi change of plans or reconstructing and create a "positive, growth producing exp rience' or experiences parents appreciate. Parent Appreciati ns 102 Par nt in this tud indicated that th ir live have be n enhanced by the experience involved in rai ing a child with D wn yndr me fr m irth t adulth od. Many parents aid they would now never wi h for a child labeled normal , that their lives wer omehow better as are ult of these experiences. The e finding agree with (1985) where a notable num ath ' r f familie have fl und their live were enhanced by what they riginally thought wa going to be an unbearabl e burden. As well, this study adds parents voi ces to academic lite rature~ voices Goodey (1991) says have been seldom heard. These voices are from parents of older children and add depth to the voices of parents who have much younger children as in Goodey's book. Finally, this study provides voices of appreciation that need to be heard to balance the dominant cultural constructions about Down sy ndrome and parenting a child with Down syndrome. Conclusions of the Study Three themes were constructed in this study : • Theme One: Awareness and Acceptance - A Reconstruction Process • Theme Two: Child as Teacher • Theme Three: Caregiver Appreciation These three themes open up spaces for new thinking and add new and different meanings to the concept of Down sy ndrome and parenting a child with Down ndrome from birth to adulthood. The two simple words " own yndrome" often conjure up many negatt e images in the minds of those that hear them Those images oft n relat to the dommant bio-medical di courses ab ut own syndr me where the p r nh d f the mdt tdual Parents' Appreciations 103 with Down syndrome is overlooked. However the e parent ' voices together with mine as the researcher, have constructed different image . Parents in this study shared rewarding joy fill d, 1 arning experien "' gained from raising a child with Down syndrome. The e experience have continued as thi child ha grown into adulthood. The fir t theme about the recon tructing proce of acceptance is important becau e it suggests that thi s typ of r earch focusing on appreciation could probably not have been done with new parents of children with Down yndrome. In order to discuss experiences that these parent appreciated, parents went through a process of reconstruction, a gradual process of acceptance of the birth of this child with Down syndrome. In order to look through an appreciative lens, parents in this study needed time, it was a "gradual process" for them to create new meanings for themselves and accept this child with Down syndrome. Once they had accepted this child, something that seemed almost impossible at birth, parents could construct meanings of appreciation with me. The importance of doing this research with parents with adult children is made clear by this parent: The rewards I think are much greater now ... .I wouldn't have ever aid that when he was little. I couldn't see past all the fears you have and all the questions you have that you really couldn't answer ... .I've come to a place of really valuing him in my life versus thinking of him as a burden. I think a lot of parents do that, or you fust start off thinking this is a burden and it's a life burden. In our conversations, parents reflected back on their live with these children and portrayed their children with Down syndrome as teachers of important le son , le on Parent 'Appreciations 104 that they appreciated. Many of the e le on wer le n par nt learned a their childr n got old r. hildr n with D wn yndrome di cu ed a teachers i a different p r p cti n w meanmg t th lab I D wn and gi parenting a wi ndr me and t th concept of and valu d teacher v r u par nting a child wh i abnormal, di abled, di ea ed. Finally the role of caregiver, a r le often 1 ked upon as burden, stres , and long term 'perp tual par nth d' wa discus ed from an appreciative tandpoint. truggles were acknowledg d, however appreciati ns [! r the r le of car giv r carne from a variety of standpoint a parents acknowl dg d there were many rewards for them. Some parents specifically appreciated that caregiving was long term. This study has provided alternative portrayals of Down syndrome and the experiences of parenting a child with Down syndrome. In li ght of these constructions that focus on appreciation there are implications for further re earch, practice and education. Limitations of the Study Disguising subjects in this research project is not without hazards. In order to respect the privacy of the participants, the one female child with Down syndrome wa camouflaged in this study. Therefore, in all the transcript quotation u ed in thi the i paper, the children with Down syndrome are referred to as male. As the re archer I do not think that the concealing of this information has chang d any f th cor meamng shared. However, I think it is imp rtant to mention a a limitation becau e there are differences in relationships between mother and daught r , father an daughter Parent Appreciati n 105 moth r and ons and father and on and the u e of m may in flu nee n versu " my daught r" m of the int rpr tation of the r ader . Implications for urther Research Thi tud focu childr n with Down on xp n nc par nt appreciat m haring their liv s with ndrome from birth to adulthood. It offi r a beginning for further re earch in adding appr ciativ to d rninant fl rm of di c ur e on syndrome. R search to date ugg t that more tudi own need to be done that focus on resilience adaptation and positive a pect of living with a child with Down syndrome. As well, researchers are calling for more research that focuses on r allifl information instead of simply abstract concept . Appreciative inquiry, a version of social constructionist inquiry, is a relatively new wa of conducting research and focuses on generating new images of social reality. This type of inquiry could be used to fill gaps in the literature on Down syndrome by looking at the positive, resilient, adaptive experiences of living with a child with Down syndrome. More appreciative inquiry could be used in studies with people who have been labeled with disabilities other than Down syndrome. Wendell (1996) states that there needs to be an understanding of disability that conte ts dominant discour e and focuse on the strength and capabilities of the disabled. More studies could be done focusing on expanding and challenging some of the social depictions of di ability and cr ating new images of disability. This research discussed the use and impact of language a a way of con tructing meanings together. ocusing on language i an ther area wh r much m r re arch could Parent Appreciation 106 b d ne. Re earcher might 1 ok more pecifically at how perception ar £ rrned and interpr tation ar mad a are ult of u ing certain type of word normal health di abiliti and uffering r lating to peopl with uch a di ea e, wn yndrom and other . In ight from thi between the con truction tudy ugge t that intere ting compari ons c uld be made f pe pie wh know omeone with Down syndrome per onally and th con truction of p ple who know only the dominant societal depictions of Downs ndrom . Thi could be done with the general public and heal th profes ional to see how the e con truction affect an individual 's views on abortion of a fetus with Down yndrome. The literature that was reviewed for this study suggests that there is little research done using people with Down syndrome as the participants. Research could be done that examines what they appreciate in their own lives and what they view as difficulties or burdens. This research indicates that we are only beginning to discover the many areas where studies could be conducted regarding genetic testing. With the information about genetics inundating the medical community and the public at large, more studies could be done looking at how parents and health profe sionals view genetic testing and how far they think testing should go. There are many area where researcher could focu th ir attention. thical issues, the notion of eugenics and prenatal te ting and th concept of producing the ideal human being are xample of p t ntial area f study. Parent Appreciation 107 Implications for Practice Par nt in l ed in thi tud gave birth to th ir children with Down syndrome tw nty t forty y ar ag . Although upp rt for par nt and th ir children with Down yndr m has incr ased dramatically inc that tim , negativ depictions of own yndrom per i t. With the in r a ing pp rtunitie fi r genetic te ting, many pro p cti e parent ar now fac d with difficult d ci ion , deci i n pro pective parents were never faced with in the past. Re earch t date suggests that pro pective parents need to be provided with: • A clearer under tanding f genetic testing pr cedures and test results . • All of the options available to them if a prenatal diagnosis is positive . • More opportunities for counselling and up port. (Pue chel, 1991 ; Spudich, 1992; Statham and Green, 1993; Blumberg, 1994; lkins, Stovall, Wilroy, and Dacus, 1986; Stein 1997; and Helm, Miranda, and Chedd, 1998) In the study done by Helmet al.(1998), ten mothers who had received a prenatal diagnosis of Down syndrome, repeatedly stressed that it was incumbent on health professionals to present all options available to parents in an open-minded way and to provide current and up-to-date information. They stated that negative terminology or accentuation of difficulties was quite unhelpful. These same mother con i tently tated that they had felt unsupported in arriving at their deci ion to keep their fetu e with Down syndrome because health profes ionals were overtly or covertly ad ocating from their wn point of view. Although the m ther ' e perience with health pr fi varied and s me were positiv and re uring, all of the m ther in thi study rep rted ional Parent Appreciation me ting with som health care pr fl i nal 10 including b t trician , nur e , technicians, and g n tic coun lor that did n t upp rt th ir ch ice to c ntinue th pregnancy. en though genetic c un elor ar curr ntl trained t b nondirective, Burke and Kolker (1994 finding upp rt that th th i te ted in r al-life ituation . In th ir final anal nondirecti ene f n ndirectiv nes in g netic coun elling i , they sugge t that th principle of in g netic counselling i fr qu ntly challeng d. ounselors in their study talked about making th ir own judgments about a eli nt' capacity for absorbing information under tre ful conditions. It was not considered that it might be directive for the coun elor not to share all pertinent information with the client. Nor was it considered directive to hare one' per onal opinion. Pueschel (1991) states: Counselors must realize that no message provided to parents is value-free ... .If factual information, various options, and guidance are sensitively provided by counselors, parents will be able to make independent decisions based upon the knowledge they have gained through the genetic counseling process.(pp.189-190) In order for prospective parents to make fully informed decisions with clarity, health professionals must be willing and able to share with pro pective parents all the options available and then respect and support parents' final deci ions. Prospective parent need to be provided with an understanding of the current general prognosi for children with Down syndrome, but also the understandings discussed in this th si - that par nting a child with Down syndr me may also bring j ys and reward . One mother in thi shared her thoughts: tudy Par nt Appreciation 109 And I think a lot of pe ple probably make that decisi n to do that (abort) out of ignoranc , y u kn w, through no fault f their and out of being frightened and the unknown and all the r t and I think it' a hame b cau e people need to know all the j y attach d with it. You kn w, in tead of the tigma and that thi horrible thing has happened ... .It d e n t take ery l ng andy u start experiencing all the wonderful parts of a bab like that. .. .It's v ry atisfying .. . .I think I could probabl ad pt ten other D wn ndrome kid , if I had the en rgy I probably would. It has been sugge ted by Palmer et al. (1993), Blumberg (1994), and Helmet al. (1998), that parent-to-parent referrals are one of the most effective ways a health pr fessional can provide prospective parents with information on what it might be like to parent a child with Down syndrome. Although these referrals by health professionals appear to be occurring in some prenatal counseling situations, these referrals could happen more consistently and become part of regular prenatal counseling procedure when parents have received a prenatal diagnosis of Down syndrome. Elkins et al. (1986) suggests standardized guidelines for prenatal counselling could be put into place that would be acceptable to both parents and professionals. This most critical sharing of information between pro pective parents and parent who already have children with Down syndrome would involve prospective parent in very different discussions than those they would have with health pr fe ional b cau e other parents would be sharing their life experi nee with a child \vith Down yndrome. When prospective parents are making lifi and death d ci ions, oth r par nt may pr v Parent Appreciations 110 to b in aluabl urce of information becau e they have been there and experienc d what life i lik with a child with D wn yndrom . However if dir ct acce to other parent wa n t a ailable, par nt c uld b pr vided with curr nt reading r video mat rial that fl cu parents vo1c n paren child r lati n hip . Inti rmati n from thi could be u edt ince g n tic coun elling i prof! sional , tudy, the e hare inti rmation about appr ciation. till a r lativ ly n w and gr wing fi 1~ health pecially phy ician ar often the one involved in handling issues spawned by g netic testing. It i important that b th coun lors and health professionals be aware of how dominant form of discourse regarding Down yndrome may inform prospective parents deci ions and their own counseling procedures. Reflec ive practices and questions could be used as a means to create room for consideration of other possibilities. Implications for Education This research indicates that there is much work to be done in educating the general public and health professionals about new and fuller portrayals of persons with Down syndrome. The Down Syndrome Research Foundation is in the process of creating pamphlets and a CD that will be available for health profes ional a d pro pective parents. This study could provide more material for pamphlets, video or poster and share appreciative quotes directly from these parent who have adult children with Down syndrome. Today, people with Down syndrome are steadily integrating into the main tr am world. However, letting go of the dominant cultural con tructi n f omeone with Par nts Appreciation 111 Down yndrom i om thing that will be helped through education. Medical, coun lor, and educational training c uld includ mor dir ct contact with pe ple with Down syndr m and ther di abilitie for tudent in these di cipline to begin t get beyond label and actual p ople in t ad . pecifically £ cu re curriculum c ur e c uld be offered that n experiential w rk with people with Down syndrome or with other disabilitie . Blurnb rg (1994) uggest that all g netic counselors a part ofth ir specialized training should be involved in an activity that will give them contact with persons with disabilitie in non-medical settings. In conclu ion, this study ha offered the "glass half full " per pective. In conversations with these parents, they shared a wide range of experiences th y appreciated having lived with a child with Down syndrome from birth to adulthood. This research is about how parents said "yes" to a child when the child was born with Down syndrome, how they have constructed concepts of appreciation even though the dominant articulations about Down syndrome are rooted in pathology and deficit. This research gives another perspective, that a child with Down syndrome can be celebrated and enjoyed. Through challenging taken-for-granted assumption and constructing new meanings by sharing conversations about experiences parents appreciated living with a child with Down syndrome from birth to adulthood, parents have been able to share elements of human possibilities that might have otherwise gone unheard. The possibilities need to be shared to help create a larger ba e of informati n that can b u ed by health professionals in their encounters with pro p cti e parent in soci ty at larg . Parent 'Appreciation 112 American A ociati n n M ntal R tardation. ( 1992). Mental retardation: D finition cla ificati n, and tern of upport . 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Parents'Appreciation 122 Appendix A Medical Infonnation regarding Down syndrome I r nt Appr ciati n 123 1 u u ll n ndi Jun t1 thr num u n1 a r 21 hr ndr m ur n rr r In ell d1 i i n kn wn as ul 11 dt 1 1 n that r ult in an embryo with m 1n t - 1 au as"tn m ... 1" tm n t1 n au th r ar m t a wn t n thre p r nt fall cases of Down ndr me 1 c pi ften referred to fth 21st chromo m Tw th r lso impli t m wn hromo m c ur aft r hr m m 1 abn rmalitie , m aicism and translocation, are n r m In m aict m, n ndi Junction fthe number 21 rtilizatt n Th r [! r there i a mixture of two types of cells, orne containing 4 chr mo orne and m c ntaining 47. This creates a mosaic pattern and thus the t rm "mo aici m 1 used. M aic1 m i rare, and is only responsible for 1 o 2 percent of all case of Down yndr me. Translocation occur when part of the number 21 chromosome breaks off during ..,ell division and attaches to another chromo orne The total number of chromosomes emains 46; however, the presence of an extra part ofth number 21 chromosome causes own syndrome. This type of chromo omal change ccur in only 3 to 4 percent of ople with Down syndrome (personal commumcatiOn, National Down Syndrome ociety, November, 1996). Parents Appreciations 124 Appendix B Definition of Mental Retardation and Developmental Disability Parent Appreciation 125 According to the American A ociation on Mental Retardation (AAMR): an individual i consider d to ha e mental r tardation ba ed on th following thr e criteria: int 11 ctual functi ning level (I ) i b 1 w 70-75; ignificant limitation exi tin two or more adaptiv kill area · and the c ndition is pre ent from childhood (D fin d a age 18 or le s. (AAMR, 1992) Adaptive kill ar as include ten adaptive skill : communication, elf-care, home living, social skill , leisure, health and afety, lf-dir ction, functional academics, community use and work. The Diagnostic and tatistical Manual ofMental Disorders (4th edition) (1994) bases its definition of mental retardation on three diagnostic features . The essential feature of mental retardation or criterion one, is significantly subaverage general intellectual functioning . This subaverage general intelligence must exist along with criterion 2, significant deficits in adaptive behaviour, and criterion 3, it must manifest before adulthood, or before age eighteen. The use of standardized IQ tests is still used to determine intellectual functioning. The intelligent quotient or IQ of an individual i obtained by administering one or more standardized tests such as the W echler Intelligence Scales for Children - Revised, the Stanford-Binet, or the Kaufman As e ment Battery for Children. Four levels of mental deficiency have been r cognized by the D M-IV and are rated according to IQ range . owever, the diagnosi fl r mental retardati n must also include deficiencies in adaptive behavi ur. Parents'Appreciations 126 Th four degr e of e erity of mental r tardati n are de cribed a follow : Mild Mental Retardation (50-55 to 70 I , M derate M ntal Retardation (35-40 to 50-55 IQ), vere M ntal Retardation (20-25 t 35-40 I ), and Pr found Mental R tardation (Below 20-25 I ) (Am rican P chiatric A sociati n, 1994). The American As ociation on Mental Retardation AAMR) no 1 nger label individuals according to the categories of mild, moderate re and profound m ntal retardation based on IQ level. Instead, it looks at the intensity and pattern of changing support needed by an individual over a lifetime. How er, everal article and books still use the terms "mild", "moderate", 'severe' , and ' profound' when referring to mental retardation. Many people who think that the term "developmental di abilities" is simply a politer way of referring to "mental retardation' do not realize that the terms are defmed differently. People referred to as having a developmental disability may also be referred to as mentally retarded. However, being referred to as mentally retarded does not automatically mean you are also developmentally disabled. Federally defined, people with developmental disabilities are at least five years of age with a mental and/or physical impairment that occurred before they turned 22 year of age. This mental and/or phy ical impairment must limit them in at least three of seven major life acti ities. ighty-seven percent of people with mental retardation have mild mental retardation. Unle they have a second disability, people with mild mental retardation may not have limits in thr e of the seven major life activities ( ovemment Affair ffice, July 1998). Parent 'Appreciations 127 Appendix C Amniocentesis, CVS, and Triple Marker Screening Parent Appreciation 128 Amniocente i generally performed b coil cting amniotic fluid using a needle pa ed through the moth r The fluid contain foetal cell chromo m abd minal wall int th amniotic ac urrounding the baby. hed b the fl tu and th e are cultured and their e amined to det ct fl tal abnorrnaliti . Whil t amniocente i is a well- establi hed prenatal diagno tic proc dure de elopments c ntinue to be made, particularly in how quickly r ult are obtain d. horionic villus sampling (CV ) is a later development and usually performed between 8 and 11 week of gestation thereby giving parents an earlier opportunity to decide about a po itive prognosi . It involves taking a villus (placental tissue) sample at the point where the placenta attache to the uterine wall. Genetic abnormalities are often reflected in this tissue. Like amniocentesis there i a small risk of miscarriage after the procedure (Steele, 1996; Glover & Glover, 1996). Previously in BC, only women thirtyfive years of age or older were offered prenatal diagnostic testing, amniocentesis or CVS. However, over the last ten years there have been considerable developments in maternal blood tests for Down syndrome. These tests do not give a definite answer through analysis of foetal cells, but indicate the level of risk of having an affected pregnancy by establishing the levels of certain protein in the blood. Currently, all women in BC, regardless of their age, are offered Maternal Serum creening al o known a Triple Marker Screening. Thi prenatal screening te t i offered during the econd trimester of pregnancy and tests maternal blood for abn nnallevels f thre biochemical markers - alphafetoprotein (AFP), chori nic g nad trophin (h estri 1. A low level of AFP, unc njugated ), and unconjugated triol, and a high lev 1ofh G are a s ciated Parents'Appreciations 129 with an increa ed pr bability for Down yndrome. Women who screen "po itive" with the triple mark r te tar then ligibl for amniocentesis or CVS. Younger women, where the majority of Down yndrom births occur now have access to a prenatal screening procedure ( teele, 1996). urrently, there are studie underway that are looking at a c mbination of blood tests and high defmition ultra ound in fetal screening for Down syndrome (Key & Lindgren, 1999). Parents'Appreciations 130 Appendix D Dimensions of Sample Dim ension s of Sampl e Female 1&2 & Canadian Caucasian $75,000 'Vlale Female 3&~ & above $60,000 Caucasian English \1a le Female· B.A. Good Male· 2 yrs. Univ. SO's 21 2 2-t Caregivers Asthma Back Operntions Both High School acuuming No No J 52,~8 33 Caregivers I Day Program I Recreation Centre No I Day Progrnm O's Female & Male 5&6 Fema le Female High School Irish I C au casian I $30,000 to $50,000 40 3 Male Technical Tr. I E ngl is h No Good $18,500 Caucasian I B. Ed . Degree ~ 9,-t Yes Day Progrnm 80's I Good ---·---- ......... 70 's Yes I 5 I 28 I 51, ~ 9. ~5,38 Io~~·A·t·t~~hed ... Apartment No job Placement College Video Store -- .... --- ...... -- ------------ I v ..., t:l) (') ::l ....... 8 I Female Iri sh I E nglish Sco tt ish I Ca ucas ian I above $75,000 I High SchoolSome college I '0 Excellent I -----------SO 's I ~ I 19 123,23,151 Yes I -----------Post Seconclnr,v (/) job Placement ------ .. --- . 'vlotcl )> "0 "0 ..., (1) ::l 9 Female Eng lish/ Swiss C aucasian $30,000 to $50,000 Yes Good High School ..j ..j 29 27, 24, 221 0~~-A~-t~~hed Apartment 0 At home - , Parents'Appreciations 132 Appendix E Letter of Introduction Consent Form Parents Appreciations 13 Letter of Introducti n Dear ______ My name i , u anne Muirhead and I am curr ntl working on my Mast r' Degree in ducational oun elling at the ongoing intere tin Down niver ity of Northern Briti h olwnbia. I have had an ndrom ince I wa a very young girl, a I grew up with an older brother with D wn syndrom . A well, my experience with my brother continued when he moved t Prince George and lived here independently for more than eight years. I worked with him on a weekly basis, completing his budget and as family members we did a great deal together socially. The research I have chosen to undertake involves looking at the experiences parent caregivers appreciate about living with a child with Down syndrome from birth through to adulthood. The study will consist of two formal conversations, each lasting approximately one to two hours. As well, I will contact you by phone or in person if there is any reason that I may need some clarification on the conversations. This research is completely voluntary . If you agree to participate I will ask that you fill out the attached "Consent Form" and return it to me personally. I will then set up an interview time and place that is comfortable, private and convenient to you. If you have any questions please contact me at 250-562-3232, or one of my thesi supervisors, either Professor Glen Schmidt at 250-960-6519 or Dr. olleen Haney at 9605639. I look forward to your assi tance in this research tudy . Sincerely, Susanne Muirhead Parents Appreciations 1 4 on ent orm Title of Project: Appreciating Adult Children with Down Syndrome I, h r by gi e my con ent to part1c1pat in this tudy. I understand that th purpo of thi res arch i t xplore the experiences that parents appreciate about living with a child with Down ndr me from birth to adulthood. This study will be conducted by talking t indi idual parent wh have an adult child with Down syndr me. Susanne Muirhead has informed me that this research forms a component of her Master' s Degree in Educational Coun elling at the Uni r ity of Northern British Columbia. This study is being supervised by Profe or Glen chmidt. If I agree to participate in this study, u anne Muirhead will arrange interview time and places at my convenience. I agree to take part in two discussions and they will each take approximately one to two hour . I agree to allow them to be audiotaped and transcribed. I am aware that all conversations will be kept strictly confidential and only usanne Muirhead will have access to the tapes. I understand that all the interview material will be coded by Susanne Muirhead to ensure anonymity and all audiotapes will be destroyed upon the completion of her thesis. If I agree to participate in this study, I understand that I may still withdraw at any time. If I have any questions or concerns, I know I can contact Susanne at 250-562-3232, Professor Glen Schmidt at 250-960-6519. Your signature below indicates that you have read and understand the above information and consent to participate in this research study. Please sign two copie and keep one for your records. Thank you for your time and your assistance. Name: _ _ _ _ _ _ _ _ _ _ _ _Signature: _ _ _ _ _ _ _ __ Date: - - - - - - - - - - - - -Witness: - - - - - - - - - - Parents'Appreciation 135 Appendix F Interview Guide Parents'Appreciations 1 6 Interview Guide • Introduce and re iew the purpose of the re earch . • Discus confidentiality and v luntary nature of participation . • xplain th audi recording pr cedure and give a surance that the tape recorder may b turned off imply by hi or h r r que t. • Obtain igned consent for the interviewing . Keep in mind there earch question: What experience do you appreciate as a parent in regards to living with a person with Down syndrome from birth to adulthood? Sample question and probes that may be used in the interview in order to elicit information - • As you think back, can you think about and then share some of your most memorable moments, moments when you really appreciated being a parent of a child with Down syndrome? • What rewarding experiences stand out for you since you began parenting a child with Down syndrome? • How did you feel experiencing that moment? • Why are these moments meaningful to you? • How has your role as caregiver shifted over the years and is there any appreciation about those shifts? • How have these experiences affected you as a person? • What experiences might you share with someone who has just had a child with Down syndrome? • What would you miss most if you had never been a parent of a child with Down syndrome? • How does your experience of being the parent of a child with Down yndrome equate with the experiences you anticipated or you were told to anticipate? • Is there anything else you would like to add to your list of e perience ? • Thank the participant for their participation in the re earch and remind th m about taking part in a follow up interview once the fir t interview ha been tran cribed and analyzed. xplain that the second interview will b forth purpo e of validating th interpretation of the conversations and to make any change nece ary to fit with their views as the participant .