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Descriptive survey of the parents of mildly retarded children Poulos, Susan J. 1968

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A DESCRIPTIVE SURVEY OF THE PARENTS OF MILDLY RETARDED CHILDREN BY Susan J . Poulos A THESIS SUBMITTED IN THE REQ.U IREMENTS MASTER OF PARTIAL FULFILLMENT OF FOR THE DEGREE OF SOCIAL WORK We accept t h i s t he s i s as conforming to the requ i red standard THE UNIVERSITY OF BRITISH COLUMBIA 1968 In p re sen t i ng t h i s t h e s i s in p a r t i a l f u l f i l m e n t of the requirements f o r an.advanced degree at the U n i v e r s i t y of B r i t i s h Columbia, I agree that the L i b r a r y s h a l l make i t f r e e l y a v a i l a b l e fo r re fe rence and Study. I f u r t h e r agree that permis s ion f o r e x ten s i ve copying of t h i s t he s i s f o r s c h o l a r l y purposes may be granted by the Head of my Department or by h.i;s r e p r e s e n t a t i v e s . It i s understood that copying or p u b l i c a t i o n of t h i s t he s i s f o r f i n a n c i a l ga in s h a l l not be a l lowed w i thout my w r i t t e n pe rm i s s i on . Department The U n i v e r s i t y of B r i t i s h Columbia Vancouver 8, Canada ABSTRACT M i l d l y r e t a r d e d c h i l d r e n p r o v i d e s p e c i a l problems f o r many p r o f e s s i o n a l d i s c i p l i n e s g i v i n g s e r v i c e s t o c h i l d r e n i n our s o c i e t y . T h i s s t u d y i s i n t e n d e d t o d e s c r i b e the n a t u r e o f the performance and/or b e h a v i o r a l t r a i t s o f t h e s e c h i l d r e n w h i c h i n f l u e n c e d p a r e n t s t o seek h e l p f r o m a p r o f e s s i o n a l p e r s on o r i n f l u e n c e d a p r o f e s s i o n a l p e r s o n t o g i v e s e r v i c e s t o the c h i l d and h i s f a m i l y . A sample of 65 c h i l d r e n was s e l e c t e d from the Vancouver s c h o o l system's S p e c i a l c l a s s e s f o r s l o w l e a r n e r s . T h e i r p a r e n t s were i n t e r v i e w e d d u r i n g t h e summer of 1967 by one i n t e r v i e w e r . The d i f f i c u l t i e s t h a t were d e s c r i b e d by p a r e n t s were not l i m i t e d t o d e v e l o p m e n t a l l a g s o r l e a r n i n g p r o b l e m s . They a l s o i n c l u d e d b e h a v i o r problems i n the home and community. The o b s e r v a t i o n s o f t h i s s u r v e y i n d i c a t e d t h a t the n a t u r e of the pro b l e m s , as f e l t by the p a r e n t s , tended t o change as the c h i l d passed t h r o u g h the c h i l d h o o d s t a g e s o f development. The problems c o r r e s p o n d e d v e r y c l o s e l y t o s o c i e t y ' s e x p e c t a t i o n s as r e l a t e d t o a g e - a p p r o p r i a t e performance and b e h a v i o r o f the normal c h i l d . The t y p e o f h e l p t h a t was sought by the p a r e n t s r e f l e c t e d t he c h a n g i n g n a t u r e o f t h e i r assessment o f t h e pr o b l e m s . In i n f a n c y , the h e l p sought was p r e d o m i n a n t l y m e d i c a l . In the t o d d l e r and p r e s c h o o l s t a g e s the ty p e of h e l p sought changed g r a d u a l l y from m e d i c a l t o e d u c a t i o n a l and s o c i a l s e r v i c e s . D u r i n g the s c h o o l - a g e s t a g e , the p a r e n t s sought h e l p from the g r e a t e s t v a r i e t y o f s o u r c e s , m a i n l y from t h e s c h o o l , but a l s o i n c l u d i n g p u b l i c h e a l t h n u r s e s , s o c i a l w o r k e r s , p s y c h o l o g i s t s and p s y c h i a t r i s t s . Factors other than the c h i l d ' s performance and/or behavior appeared to i n f l uence the patterns of he lp - seek ing found among the parents but these were not f u l l y assessed by t h i s s tudy. The parents were not always r e a l i s t i c in t h e i r a p p r a i s a l s of t h e i r c h i l d ' s a b i l i t i e s . Fee l i ng s of ambivalence, confus ion and anx i e t y regard ing the c h i l d ' s problems and the var ious p r o f e s s i o na l s i nvo l ved , were f r e q u e n t l y noted. To gene ra l i z e these f i n d i n g s from t h i s sample of c h i l d r e n in Spec ia l c l a s se s to the whole popu lat ion of m i l d l y retarded c h i l d r e n was made d i f f i c u l t , by the method of sampling but one might specu late that d i f f e r e n c e s between t h i s sample and the popu lat ion would be d i f f e r e n c e s of degree ra ther than k i n d . ACKNOWLEDGEMENTS I would l i k e to express my s i n ce re a p p r e c i a t i o n to Mrs. Pat Tanabe, F i e ld -work Superv i so r , Research Sequence, School of Soc i a l Work. Her suggest ions and constant a v a i l a b i l i t y provided the needed d i r e c t i o n in the o r g a n i z a t i o n of t h i s s tudy. I am a l s o g r a t e f u l to Dr. Hamish N i c h o l , Head, Sec t ion of C h i l d P s y c h i a t r y , Facu l t y of Med ic ine , Un i ve r s i of B r i t i s h Columbia, f o r the many suggest ions he o f f e r e d throughout the yea r . To Dr. Norman El 1 i s , A s s i s t a n t D i r e c t o r , Department of Research and Standards, Vancouver School Board, and the many teachers of the Spec ia l C lasses f o r slow learner s my s i n ce re thanks f o r t h e i r k ind c o - o p e r a t i o n . The many parents who vo lunteered to be interv iewed f o r t h i s study a l s o deserve s p e c i a l mention and thanks. TABLE OF CONTENTS Chapter Page 1. INTRODUCTION 1 Research quest ion 2 Purpose of the Study 2 Theo re t i c a l Framework 3 Review of the L i t e r a t u r e k Further De s c r i p t i o n of Research Question 6 General De s c r i p t i o n of Methodology 6 2. METHODOLOGY Research Design 8 Sample Design 9 Sampling Procedure Used in S e l e c t i n g 10 a Group f o r Interv iew Contro l Groups 11 Sampling Procedure Used in S e l e c t i n g 12 a Contro l Group Operat iona l S p e c i f i c a t i o n s 12 Development and De s c r i p t i o n of Research 14 1nstruments P lan f o r Data A n a l y s i s 18 R e l i a b i l i t y and V a l i d i t y 19 3. DESCRIPTION OF SAMPLE 21 k. FINDINGS 28 H i s t o r y of the C h i l d ' s Development 28 C h i l d ' s Entrance in to the Spec ia l C lass 34 Present Home,. School and Community 38 Adjustment of C h i l d Chapter Page k. FINDINGS ( con t ' d ) Second Stage of A n a l y s i s hi 5. SUMMARY AND CONCLUSIONS 52 BIBLIOGRAPHY APPENDIX LIST OF TABLES Table Page I. Percentage Table of Ages of the Ch i l d ren 21 in Sample and Contro l Groups I I . Percentage Table of Sex of the Ch i l d r en 22 in the Sample and Contro l Groups I I I . Percentage Table of I.Q.. Scores of the 23 Ch i l d r en in the Sample and Contro l Groups IV. Frequency D i s t r i b u t i o n of the C h i l d ' s 2k Behavior in Class V. Number of Parent-Teacher Conferences 2k V I . Percentage D i s t r ibut ion of Occupations 25 of the Fathers in the Sample Compared w i th the Census Tract Information f o r Vancouver V I I . Percentage D i s t r i b u t i o n of Educat ion: 26 Interviewed Sample and General Popu la t ion V I I I . D i s t r i b u t i o n of Mothers ' Ages a t the Time 26 of the C h i l d ' s B i r t h IX. Age of C h i l d when Parents F i r s t Not iced 28 Something which Caused Them some Concern X. Nature of the I n i t i a l Problem F e l t by 29 Parents Concerning t h e i r C h i l d X I . P r o fe s s i ona l Help Sought by Parents 30 X I I . Pa ren t s ' Fee l i ng s about Help Received 31 X I I I . Pa ren t s ' Fee l i ng s about F i r s t Help Received 33 and Subsequent Frequency of Help-Seeking Contact s ; Ho r i zon ta l Percentage Table XIV. Ages of Ch i l d ren a t Time of Entrance 3k i n t o the Spec ia l Class XV. Last Regular C lass Attended by the Ch i l d ren 35 XVI. Comparison of Age D i s t r i b u t i o n s : when the 37 Spec ia l C lass was F i r s t Discussed and when the Placement was Made. Table XVI I. C h i l d ' s Present Performance and Behavior in School Page 38 XV I I I . C h i l d ' s Behavior in Home 39 XIX. I n t e r v i ewe r ' s Rat ing of Parents 42 XX. Need of C h i l d f o r Further Help hh XXI. Help .Rece i ved by Parent and C h i l d over 46 the Years XXI I . Dev ia t ion of Parent I.Q.. from Test ' I .Q.. Appendix H and Rat ing of Parent Awareness XXI I I . . I .Q.. of C h i l d and Age of C h i l d when Problem 48 was Recognized XXIV. Medical Problems and Age of Recogn i t ion 49 XXV. Educat ion of Father and Age of C h i l d 49 when Problem was Recognized. XXVI. Age at Recogn i t ion of Problem and Pa ren t s ' Appendix H Fee l i ng s about Contacts w i th Regular C lass Teacher XXVI I. Age at Recognition of Problem and Pa ren t s ' Appendix H Reports of who I n i t i a t e d the C h i l d ' s Trans fer i n to a Spec ia l C lass XXVI I I . Age at Recogn i t ion and Age when En te r i ng the 51 Spec ia l C lass LIST OF APPENDICES A. I D e s c r i p t i o n of the I n t e r v i e w s B. L e t t e r E x p l a i n i n g t h e P r o j e c t ; s e n t t o a l l P a r e n t s of C h i l d r e n i n S p e c i a l C l a s s e s i n Vancouver C i t y C. I n t e r v i e w Guide D. S e l f - A d m i n i s t e r e d Q u e s t i o n n a i r e E. R a t i n g I n s t r u m e n t F. Q u e s t i o n n a i r e s e n t t o T eachers G. I n s t r u m e n t used f o r C o l l e c t i n g I n f o r m a t i o n f r o m School Board Records H. A d d i t i o n a l T a b l e s : T a b l e X X I I : D e v i a t i o n of P a r e n t I.Q.. f r o m T e s t I.Q.. and R a t i n g of P a r e n t Awareness T a b l e XXVI: Age o f R e c o g n i t i o n of Problem and P a r e n t ' s F e e l i n g s about C o n t a c t s w i t h the R e g u l a r C l a s s Teacher T a b l e X X V I I : Age of R e c o g n i t i o n o f Problems and P a r e n t s ' R e p o r t s of who I n i t i a t e d the C h i l d ' s T r a n s f e r i n t o a S p e c i a l C l a s s Chapter 1 Int roduct ion The m i l d l y re tarded c h i l d presents a problem to many d i f f e r e n t p ro fes s ions in the community. P u b l i c schools provide s pec i a l educat ion f o r these c h i l d r e n . The f a m i l y doc to r , p u b l i c hea l th nurse and s o c i a l worker are o f t en c a l l e d upon by the parents of these c h i l d r e n f o r i n fo rmat ion and a d v i c e . P s y c h i a t r i s t s and p sycho log i s t s are f r e q u e n t l y approached by parents to g ive he lp w i t h emotional problems exper ienced by the c h i l d r e n and t h e i r f a m i l i e s . A l l of these p ro fes s ions may become invo lved a t some po int in the c h i l d ' s development in a s ses s ing h i s c a p a c i t i e s , both i n t e l l e c t u a l and emot iona l , and he lp ing in some way to plan f o r the c h i l d ' s f u t u r e . The American A s s o c i a t i o n on Mental De f i c i ency has de f ined mental r e t a r d a t i o n as "subaverage general i n t e l l e c t u a l f u n c t i o n i n g which o r i g i n a t e s dur ing the developmental per iod and is a s soc i a ted w i t h impairment in adapt ive behav i o r " . A more s p e c i f i c d e s c r i p t i o n of the m i l d l y re tarded i n d i v i d u a l would inc lude some assessment of h i s i n t e l l e c t u a l a b i l i t y . The I.Q.. t e s t has been the most f r e q u e n t l y used t e s t in the past ; the scores of the c h i l d r e n c l a s s i f i e d as m i l d l y retarded vary from 60 t o 80. This does not a u t o m a t i c a l l y mean that a p a r t i c u l a r c h i l d in t h i s range w i l l r e q u i r e , or r e ce i ve s pec i a l he lp and a t t e n t i o n from the var ious p r o f e s s i on s . Rather, i t seems to be on the bas i s of performance and/or behavior that a c h i l d , and h i s parents seek and rece i ve p ro fe s s i ona l he lp ( i . e . on the bas i s of impairment of adpat ive behav i o r ) . L i t t l e is a c t u a l l y known (or a t l e a s t documented) about the - 2 -performance or behav iora l t r a i t s of these c h i l d r e n which p r e c i p i t a t e s he lp - seek ing attempts by parents and- need-meeting responses by p r o f e s s i o n a l s . One might assume that such performance and behav iora l t r a i t s would be s i m i l a r in k ind but d i f f e r e n t in degree to those d i s p l a yed by the more seve re l y retarded c h i l d . The research quest ion formulated f o r t h i s study is g ene ra l : what are the performance and/or behav iora l c h a r a c t e r i s t i c s of these m i l d l y re tarded c h i l d r e n which i n f l uence parents in t h e i r d e c i s i o n to seek he lp and which i n f luence p r o f e s s i ona l s in t h e i r d e c i s i o n to g ive s e r v i ce s to the c h i l d and h i s f a m i l y . Rather than a s se s s ing the problem from the po in t of view of any one p ro fe s s i ona l d i s c i p l i n e , the parents have been s i n g l e d out as t h i s s t udy ' s source of i n f o rmat i on . The reasons f o r t h i s cho ice were numerous. None of the p ro fes s ions provides cont inuous s e r v i c e to these c h i l d r e n throughout t h e i r pre-school and school yea r s . To gather in format ion from one or more p ro fe s s i ona l groups might presuppose the appropr iateness of the s e r v i c e to the needs of the c h i l d r e n and t h e i r f a m i l i e s and the i r r e l e vance of other types of s e r v i c e s . It is w i t h i n the f am i l y system that the c h i l d rece i ve s the most continuous type of c a re . F i n a l l y , i t is the f a m i l y which f e e l s the g rea te s t impact of the retarded c h i l d f i r s t , and f o r the longest per iod of t ime. The i n t e n t i o n of t h i s study is t w o - f o l d : to c l a r i f y those c i rcumstances concern ing the m i l d l y retarded c h i l d which p r e c i p i t a t e he lp - seek ing attempts made by parents and to assess , in a very l i m i t e d way, the extent to which he lp - seek ing attempts made by parents are s u c c e s s f u l l y met by the requested s e r v i c e ( i n the op in ion of the pa ren t s ) . The f i n d i n g s , i t is hoped, w i l l be of i n t e r e s t and usefu lness to the many p ro fe s s i ona l d i s c i p l i n e s involved in g i v i n g s e r v i c e to these m i l d l y retarded c h i l d r e n and t h e i r f a m i l i e s . Theo re t i c a l Framework: I m p l i c i t in the f o rmu la t i on of the research problem was the thought t h a t , from pa ren t s ' po int s of v iew, any recognized problems would c l o s e l y r e l a t e to t h e i r pe rcept ion of " no rma l " c h i l d development and behav io r . Problems would then be def ined by t h e i r own c h i l d ' s " d e v i a t i o n away from the norms of development and behav io r . Although i t is recognized that norms vary somewhat from c l a s s to c l a s s and from sub-c u l t u r e to s ubcu l t u r e , one can assume that there are s oc i e t y -w ide sets of expecta t i ons regard ing c h i l d development; The support g iven to these expecta t i ons by phy s i c i an s , p u b l i c hea l th and school personnel has a s i g n i f i c a n t i n f l uence on the pa rent s ' percept ions of t h e i r c h i l d r e n regard les s of c l a s s or group a f f i l i a t i o n . Dr. Spock ' s book on the young c h i l d is a good example of the type of l i t e r a t u r e that is a v a i l a b l e to parent s . In h i s book, Dr. Spock desc r ibes the performance and behavior a parent might " e x p e c t " to perce ive f o r each developmental stage which the c h i l d passes through. The " s t a g e s " that are most o f ten r e f e r r e d to e x p l i c i t l y or i m p l i c i t l y are Infancy ( b i r t h to one y e a r ) , Toddler (one to two and a ha l f y e a r s ) , Preschool (two and a ha l f to f i v e y e a r s ) , School ( s i x to ado le scence) , - k -and Ado lescence. Such stages roughly correspond to i nc rea s ing degrees of independence of the c h i l d from h i s parent s . Parents have le s s c l e a r - c u t expecta t ions of c h i l d development dur ing the school yea r s . Learn ing to get a long out s ide the home (with f r i e n d s and in school ) forms the main e x p e c t a t i o n . The school tends to assume r e s p o n s i b i l i t y f o r judg ing achievement or development of the c h i l d a lthough most parents have expecta t ions of minimal educat ion ( f o r example: w r i t i n g and a r i t h m e t i c ) which w i l l prov ide the necessary t o o l s f o r l a t e r 1 i f e . S i m i l a r l y in adolescence there are les s c l e a r l y de f ined sets of expecta t i ons than in the pre-school yea r s . Some i n t e r e s t in f u tu re jobs or careers would be expected from the o l de r teenager. The school s t i l l p lays a major r o l e , e s p e c i a l l y in determin ing the f u t u r e l e v e l or type of work, by a s s i gn i ng ado lescents to the academic or occupat iona l streams. I n te re s t and p a r t i c i p a t i o n in peer a c t i v i t i e s would a l s o be " e xpec t ed " from the ado le scent . Review of the L i t e r a t u r e : This study i s focused on the patterns of he lp - seek ing of parents and the responsiveness of p ro fe s s i ona l persons to the needs of these f a m i l i e s . Most of the l i t e r a t u r e a v a i l a b l e regard ing the m i l d l y retarded c h i l d ( i n the educable range) i s concerned w i th the s pec i a l educat ion problems presented by t h i s group to the P u b l i c School system. Family problems that are r e l a t e d to m i l d l y retarded c h i l d r e n have not rece ived much a t t e n t i o n in the l i t e r a t u r e . Fami l i e s of the more seve re l y retarded - 5 -c h i l d have come under cons ide rab le s c r u t i n y w i t h respect to the h e l p -seek ing and need-meeting processes found in many communities. The design of the present study was in f luenced to a cons ide rab le extent by these previous s tud ie s that were concerned w i t h the seve re l y retarded c h i l d . Many i n v e s t i g a t o r s of the seve re l y retarded c h i l d ( 3 , 1 3 , 1 6 , 2 3 ) have recorded the d i f f i c u l t i e s that are exper ienced by f a m i l i e s dur ing the stage of i n i t i a l r e c o g n i t i o n and acceptance of the c h i l d ' s r e t a r d a t i o n . Schulman and Stern ( 17) found that there is no bas i s f o r the w ide l y held b e l i e f that parents are unaware of t h e i r c h i l d ' s r e t a r d a t i o n p r i o r to r e c e i v i n g p ro fe s s i ona l s e r v i ce s (they compared the pa ren t s ' e s t imates of t h e i r c h i l d ' s I.Q.. to the c h i l d ' s ac tua l t e s t performance and found a high degree of correspondence). However, t h e i r awareness of the problem is sensed ra ther than c l e a r l y understood in many cases; sometimes the a c t i o n s of p r o f e s s i ona l s can convert t h i s awareness i n to con fu s i on , g u i l t , and anx i e t y f o r the parent s . Other i n v e s t i g a t o r s have concentrated on " a c t i o n s " that are taken by the p ro fe s s i ona l groups concerned. They have desc r ibed the c o n s i -derab le e f f e c t on the pa ren t s ' awareness, understand ing, and acceptance of the c h i l d ' s l i m i t e d c a p a c i t i e s which r e s u l t s from the i n i t i a l i n t e r -p r e t a t i o n of the c h i l d ' s r e t a r d a t i o n by a p ro fe s s i ona l person ( 2 , 3 , 1 0 , 2 1 , 2 3 ) . In a t l e a s t one r e t r o s p e c t i v e study (21) parents were found to be more aware of "how" s e r v i c e s were rendered than "what " s e r v i c e was g iven when they were asked to r e c a l l the he lp they had r e c e i v e d . The pa ren t s ' a b i l i t y to plan f o r t h e i r c h i l d ' s f u t u r e c o n s t r u c t i v e l y has a l s o been found to be a f f e c t e d by the i n t e r v e n t i o n of t r a i n e d coun se l l o r s ( l ) . L i l l i a n R i p p l e ' s book M o t i v a t i o n , Capac i ty and Opportunity ( 15) - 6 -i s devoted to the measurements of the e f f e c t s of s o c i a l casework. Her c l a s s i f i c a t i o n of s o c i a l w o r k e r - c l i e n t i n t e r a c t i o n as " s u p p o r t i v e , neut ra l or impeding" focuses on the c l i e n t ' s f e e l i n g s about p ro fe s s i ona l s e r v i c e s and is used e x t e n s i v e l y in the present s tudy. Further De s c r i p t i o n of Research Quest ion: The research ques t ion which is posed f o r study is gene ra l , and conta ins w i t h i n i t many other ques t i on s . How o ld . are the c h i l d r e n when the parents f i r s t no t i ce something which causes them some concern? What a l e r t s them to t h i s i n i t i a l percept ion of something d i f f e r e n t in the c h i l d ? When do they f i r s t seek the op in ion of someone ou t s i de of the f am i l y ? Are a l l parents aware of some l i m i t a t i o n of t h e i r c h i l d ' s i n t e l l e c t u a l c a p a c i t i e s by the time the c h i l d enters school ? How do the parents respond to the s c h o o l ' s suggest ion that the c h i l d be placed in a Spec ia l c l a s s f o r slow l ea rne r s ? Do parents seek help from non-school p r o f e s s i o na l s a f t e r the c h i l d is in school ? For what reasons? Is he lp - seek ing always r e l a t e d to the performance and/or behavior of the c h i l d , or is i t r e l a t e d to the s pec i a l c h a r a c t e r i s t i c s of the parents? The l i s t of quest ions one cou ld pose seems i n f i n i t e ; t h i s s t u d y w i l l not t r y to cons ider a l l . Those quest ions l i s t e d above more or les s encompass the i n t e r e s t s of t h i s s tudy. General De s c r i p t i o n of Methodology: The l e v e l of research design which was f e l t to be most s u i t e d to the problem under study was e x p l o r a t o r y . Because of the absence of pe r t i n en t l i t e r a t u r e and/or other s t ud i e s concerned w i t h t h i s p a r t i c u l a r - 7 -group of c h i l d r e n , no p r e d i c t i o n s have been made of expected f ind ings. The Spec ia l c l a s se s f o r slow learner s in the Vancouver c i t y school system provided the popu la t ion f o r s tudy. The parents of each of these c h i l d r e n ( l , 0 2 l ) were asked i f they would consent to be i n te r v i ewed . Those consent ing numbered 37^ and from t h i s group, s i x t y - f i v e f a m i l i e s were randomly s e l e c ted f o r s tudy. Each parent was d i r e c t l y interv iewed by the w r i t e r ; where po s s i b l e mothers and f a the r s were interv iewed s e p a r a t e l y . Pre-des igned que s t i onna i re guides were used c o n s i s t i n g mainly of c losed-ended que s t i on s . Each i n te r v i ew requ i red approx imate ly one hour and a h a l f to complete. Interviews were conducted from J u l y f i r s t to August t h i r t y -f i r s t , 1967. A group of c h i l d r e n whose parents were not interv iewed was randomly chosen and a l i m i t e d amount of in format ion was gathered about them from the Vancouver School Board records and t h e i r teachers of the '66 t o '67 school yea r . These data were compared to s i m i l a r data on the interv iewed sample to assess the representat i venes s of those s e l e c ted f o r i n t e r v i e w . The plan f o r a n a l y s i s of i n te rv i ew data organized the in format ion i n t o f ou r main a reas : demographic and s o c i a l c h a r a c t e r i s t i c s of the c h i l d r e n and t h e i r f a m i l i e s ; the c h i l d ' s exper ience in the Spec ia l C l a s s ; the c h i l d ' s adjustment in f a m i l y , school and community; and a h i s t o r y of the c h i l d ' s development. - 8 -Chapter 2  Methodoloqy Research Design The research quest ion formulated f o r t h i s study re s t s on an assumption: that he lp - seek ing by parents and s e r v i c e s rendered by p r o f e s s i o na l s are on the bas i s of performance or behav iora l c h a r a c t e r i s t i c s of the c h i l d r e n . Research evidence to s ub s t an t i a t e t h i s assumption is scanty (and is found mainly in the l i t e r a t u r e on the more seve re l y retarded c h i l d ) . Accept ing t h i s assumption, the study poses the que s t i on : what is the nature of these c h a r a c t e r i s t i c s . Here again the evidence i s scanty and re s t s s o l e l y on the f i n d i n g s of s tud ie s of the severe r e t a r d a t e . It was f e l t that t h i s quest ion requ i re s e x p l o r a t i o n before any hypotheses cou ld be proposed f o r t e s t i n g . To use A l f r e d Kahn's term (12) the l e v e l of des ign chosen is a " f o r m u l a t i v e - e x p l o r a t o r y " one} " i t s o b j e c t i v e is the i d e n t i f i c a t i o n of promis ing concepts and p r e l im i na r y hypotheses in a f i e l d which as yet has had l i m i t e d development and thus is not prepared f o r e l abo ra te exper imental designs to t e s t complext, a b s t r a c t hypotheses " . The d i r e c t i n te rv i ew method of data c o l l e c t i o n seemed to be most app rop r i a te to the problem under s tudy. Although a que s t i onna i re might have brought f o r t h a l a r ge r number of parents responding, much of the in format ion needed to answer the research quest ion posed, r e l a t e s to a t t i t u d e s , op in ions and f e e l i n g s which the i n te rv iewer may be ab le to detect and e x p l o r e . - 9 -The use of on ly one i n te rv iewer to conduct a l l of the in terv iews helps to ensure u n i f o r m i t y and a c on s i s t en t l e ve l of r e l i a b i l i t y of the f i n d i n g s but placed a r e s t r i c t i o n on the number of i n te rv iews po s s i b l e w i t h i n the time a v a i l a b l e . Sample Design De s c r i p t i o n of Sample chosen f o r Study: The Vancouver School system's Spec ia l c l a s se s f o r slow lea rner s provided a convenient source from which to s e l e c t c h i l d r e n to be inc luded in the s tudy. In the School year 1966-67 (the year chosen f o r the study) there were 1,012 c h i l d r e n e n r o l l e d in these c l a s se s which are w ide l y spread around the Vancouver a r ea . The main c r i t e r i o n f o r entrance i n to these c l a s se s i s an i n a b i l i t y to cope w i th the regu la r c l a s s program. Placement i s made upon a recommendation by the c h i l d ' s r egu la r c l a s s teacher and p r i n c i p a l , an assessment of the c h i l d by a School Board P sychometr i c i an , and consent by the c h i l d ' s parent s . The c r i t e r i o n f o r entrance does not d i s c r i m i n a t e between emotional d i s tu rbance or low i n t e l l i g e n c e so that one cannot be c e r t a i n of randomly s e l e c t i n g from t h i s group on ly those c h i l d r e n who are c l a s s i f i e d as m i l d l y r e t a rded . This r e f l e c t s the general l ack of c l a r i t y regard ing the d e f i n i t i o n of the m i ld r e ta rda te ( to what extent can one expect the adapt ive behavior of the m i ld r e ta rda te to be impa i red) . The popu lat ion of m i l d l y retarded i n d i v i d u a l s does not appear to be a s t ab l e one; the numbers are swe l led by i n c l u s i o n of c h i l d r e n whose f u n c t i o n i n g is retarded due to emotional d i s t u rbance . Once the c l a s se s f o r slow lea rner s were commenced ( ten years ago) i t was e s t a b l i s h e d that the I.Q.. scores of the c h i l d r e n admitted should - 10 -not be h igher than 80 (or 85 a t the most). In more recent yea r s , c h i l d r e n w i t h I.Q..'s c l o s e r to 90 have been admitted in to the c l a s s e s ; t h i s i s c on s i s t en t w i t h the general f i n d i n g in many parts of Vancouver c i t y that the average I .Q,. is c l o s e r to 110 than 100. Very few c h i l d r e n w i th r.Q,.'s lower than 60 have been admitted to these c l a s s e s . They are r e f e r r e d to a separate program that is run by the School Board (Oarkidge Schoo l ) . It cannot be assumed that a l l c h i l d r e n in the 60 to 85 I.Q.. range in the school age popu la t ion in Vancouver w i l l be found in the Spec ia l c l a s s e s . In a d d i t i o n to those placed on a w a i t i n g l i s t there are other c h i l d r e n in the lower elementary grades whose behavior or performance has not yet warranted a t r a n s f e r to the Spec ia l c l a s s . That the c h i l d r e n in Spec ia l c l a s s e s have been s i n g l e d out f o r s pec i a l a t t e n t i o n by the school system may bespeak of t h e i r d i f f e r e n t n e s s from the general popu la t ion of m i l d l y re tarded c h i l d r e n of school age. This obv ious l y l i m i t s the extent to which the f i n d i n g s of t h i s study might be gene ra l i zed to the popu l a t i on . This p a r t i c u l a r sub-popu la t ion was chosen f o r study because i t s members appear to be examples of the popu la t ion in quest ion ( m i l d l y retarded c h i l d r e n of school age) in terms of t h e i r measured performance and second ly , because i t was the most a c c e s s i b l e group f o r s tudy. Sampling Procedure Used in S e l e c t i n g a Group f o r In terv iew: A b r i e f l e t t e r of e xp l ana t i on was sent to every f a m i l y having a c h i l d in a Spec ia l c l a s s f o r slow learner s (Appendix B ) . These l e t t e r s were sent out from the schools themselves. The purpose of t h i s l e t t e r was to ob ta i n the consent of the parents to be i n te rv iewed; they were requested to re tu rn the forms to the school i n d i c a t i n g whether they would - 11 -consent. Such a method of s e l e c t i o n r a i s e s immediate problems: are those parents who consented d i f f e r e n t in any way from those who refused or from those who s imply d id not acknowledge the l e t t e r . However, i t was decided that each parent should have the r i g h t to determine whether they w i l l a l l o w t h e i r p r i vacy to be invaded; r e l i a b i l i t y of f i n d i n g s assumed secondary importance. Out of the t o t a l 1,012 forms sent ou t , 461 were returned (45 .5 ) ) . E ighty-seven of those parents r e t u r n i n g a form refused consent to be i n te r v i ewed , the remaining 374 accepted. The 37^- forms were arranged in a l p h a b e t i c a l order (not by schools which correspond roughly to d i s t r i c t s in Vancouver) and every s i x t h form was s e l e c ted u n t i l s i x t y -f i v e had been pu l l ed out . Those s i x t y - f i v e f a m i l i e s chosen f o r the i n te r v i ew f e l l i n to two groups: 50 two-parent f a m i l i e s and 15 one-parent f a m i l i e s . Only two of the l a t t e r group were a c t u a l l y s i n g l e parents ; the r e s t f e l l i n to t h i s group because t h e i r spouse was out of the c i t y when the i n te r v i ew was conducted or refused to be i n te r v i ewed . Of the t o t a l 115 in terv iews conducted, 61 were w i th mothers ( i n four cases only the f a t he r was seen) . There were 54 in terv iews conducted w i t h f a t h e r s . Contro l Groups: The method used to s e l e c t the sample f o r i n te r v i ew r a i s e s many quest ions about the representat i venes s of the sample of the popu la t ion of c h i l d r e n in Spec ia l c l a s s e s . A con t r o l group was randomly s e l e c ted f o r comparison (only a l i m i t e d amount of in format ion was a v a i l a b l e on t h i s l a t t e r group). In a d d i t i o n , in format ion was c o l l e c t e d on a l l e i ghty - seven of the c h i l d r e n of those f a m i l i e s r e f u s i n g i n t e r v i ews . - 12 -Sampling Procedure Used in S e l e c t i n g a Contro l Group: The Vancouver School Board records conta in a l i m i t e d amount of in format ion on every c h i l d in a Spec ia l c l a s s f o r slow l e a r n e r s . The f i l e s are arranged in a l p h a b e t i c a l o rder . The names of one hundred c h i l d r e n were pu l l ed from t h i s f i l e by s e l e c t i n g every tenth c a r d . In one case the c h i l d had a l ready been inc luded in the i n te r v i ew sample; that card was put back and the one d i r e c t l y behind i t was p u l l e d . In no cases was the card of a c h i l d whose parents had refused to be Interv iewed p u l l e d . There was a chance that a c h i l d whose parents had consented to the i n t e r v i ew , but was not chosen to be i n te rv iewed, could be Included in t h i s c on t r o l group. Operat iona l S p e c i f i c a t i o n s : The i n t e r e s t of t h i s study does not revo lve around pa ren t s ' request f o r one s p e c i f i c s e r v i c e (a focus found in many of the s tud ie s of the more seve re l y retarded c h i l d ) but r a t h e r , a more general overview of each c h i l d ' s developmental h i s t o r y , d i f f i c u l t i e s encountered, areas of concern f o r parents and help sought by parent s . Such a broad focus nece s s i t a ted the gather ing of in format ion about severa l stages of the c h i l d ' s development. Four areas of interest were i d e n t i f i e d : c h a r a c t e r i s t of the f a m i l y , developmental h i s t o r y of the c h i l d , pa ren t s ' percept ions of t h e i r c h i l d ' s entrance i n to the Spec ia l c l a s s , and pa ren t s ' percept ions of t h e i r c h i l d ' s present adjustment to home, school and community. The f i r s t a r ea , f a m i l y c h a r a c t e r i s t i c s , was of i n t e r e s t f o r at l e a s t two reasons: to determine how rep re sen ta t i ve of the general popu la t ion t h i s group was and to determine the extent to which pa rent s ' - 13 -feelings about their child and services available to them reflected the child's performance and/or behavior or some attribute of the parents themselves. The second area is of primary interest to this study. It is intended to answer such questions as: how old was the child when parents f i r s t perceived that he was different, what alerted them to this perception, where did they turn for help ( i f at a l l ) and how helpful did they find this service (or friend, relative, professional, etc.). The third area, parents' perceptions of their child's entrance into the Special class focuses on the d i f f i c u l t i e s of the school-age stage of the child's development. For many parents, it is possible that the child's entry into the class w!M 1 be the f i r s t contact a parent has had with a professional person (that is, the f i r s t contact wlherein the child's limitations will be discussed). Because parents had been approached through the school system about the interview, i t was thought the questions about the child's placement in a Special class would correspond closely to parents' expectations of this research interview, so these were asked in the early part of the interview. The fourth area identified: parents' perceptions of their child's present adjustment and needs, was included for a number of reasons; parents' feelings about their child's adjustment as well as their assessment of the degree and kind of professional help s t i l l needed will complete the description of the child and his family. An assessment of the extent to which parents' perceptions of their child are r e a l i s t i c was also included. - 1 4 -Development and De s c r i p t i on of Research Instruments: An i n te rv i ew guide was used (Appendix C) cover ing a l l aspects of the four areas of i n t e r e s t . In develop ing the gu ide, the items were f i r s t l i s t e d and then the ac tua l quest ions were s p e c i f i e d . . The i n te r v i ew guide i nc l uded : the item, the que s t i on , and a l i s t of po s s i b l e responses. The i n te r v i ewer was to ask each que s t i on , 1 i s t e n to the response, and then record the answer, choos ing from the l i s t of po s s i b l e responses o r , i f the response was not p rev i ou s l y l i s t e d , add yet another response to the l i s t . Each of the po s s i b l e responses l i s t e d were independent c a t e g o r i e s . Many quest ions requ i red a judgment on the part of the i n te rv iewer before the response could be recorded. The o v e r - a l l p lan of the i n te r v i ew was to work from the l e a s t s u b j e c t i v e items to the more s u b j e c t i v e (and o f t en anx i e t y producing) items and tempora l l y , from the present to the pas t . The i n te r v i ew began w i th a b r i e f d e s c r i p t i o n of the purpose of the study which was s t a ted as : to gain an understanding of the kinds of help parents f e e l t h e i r c h i l d r e n need and the present a v a i l a b i l i t y of appropr i a te s e r v i c e s . No mention was made of r e t a r d a t i o n a t that time or a t any other time dur ing the i n te rv i ew unless parents used the term themselves. D e s c r i p t i v e items about the c h i l d were f i r s t requested r e l a t i n g , f o r the most p a r t , to h i s school exper ience and performance in the 166- 167 school yea r . The i n te rv i ew then moved i n to pa ren t s ' f e e l i n g s about the c h i l d ' s school exper ience , pa ren t s ' contacts w i th school per sonne l , and then in to an e l a b o r a t i o n of the per iod when the c h i l d was f i r s t t r a n s f e r r e d i n to the Spec ia l c l a s s . The i n te rv i ew guide then s h i f t e d i t s focus to the c h i l d ' s adjustment in home and community. One item (number 33) was inc luded in the -15 -schedule but dropped a f t e r several interviews. The question attempted to get parents to r e c a l l behavior problems displayed by the c h i l d at each developmental stage. The parents did not seem to understand the question and few were able to answer i t . It should be noted that the f i r s t few interviews were used to test the instrument. It was decided that i f the instrument proved s a t i s f a c t o r y (the majority of the questions e l i c i t i n g the desired response) these interviews would be included in the f i n a l a n a l y s i s . If the instrument had to be revised, then those interviews would be disregarded. The only change found necessary was the dropping of item 33. Questions about the family were the next items in the interview guide. Some indication of whether the c h i l d looked retarded or slow was the aim of question 43; every parent answered the question (who does look l i k e in your family) but few of the responses gave the desired information. History of the chi l d ' s d i f f i c u l t i e s and services requested by parents were the next items in the guide. Although c h i l d -hood stages of development are s p e c i f i e d in the l i s t s of possible responses, i t should be noted that references to these stages were not included in any questions. The history of the ch i l d ' s contacts were found to be a convenient method in helping parents to r e c a l l d i f f i c u l t i e s encountered throughout the years (unlike item 33 which did not seem to be relevant to the parents). The study did not d i s t i n g u i s h between p a r e n t - i n i t i a t e d contacts and p r o f e s s i o n a l - i n i t i a t e d contacts in this developmental history (this d i s t i n c t i o n has been made regarding the ch i l d ' s entrance into the Special c l a s s ) . Parents were asked to express the i r f e e l i n g s about each of the contacts referred to in the interview. - 16 -The ques t ion used was: was t h i s conve r sa t i on , or meeting, or ses s ion h e l p f u l or not. The i n te rv iewer then coded t h e i r responses us ing L i l l i a n R i p p l e ' s c l a s s i f i c a t i o n of suppor t i ve ( a c t i v e l y promoting the i n d i v i d u a l ' s e f f o r t s , behavior or a t t i t u d e s , conducive to the i n d i v i d u a l ' s problem-s o l v i n g e f f o r t s ) ; neut ra l ( ne i the r support ive nor impeding); and impeding ( to handicap or hamper i n d i v i d u a l ' s e f f o r t s , to a c t i v e l y f r u s t r a t e or oppose the i n d i v i d u a l ' s p rob lem-so lv ing e f f o r t s ) (15). As t h i s c l a s s i f i c a t i o n i s used to e x t e n s i v e l y in the present s tudy, i t would be h e l p f u l to g ive examples of the kinds of responses the i n te rv iewer inc luded in the three c a t e g o r i e s . Suppor t i ve : "D r . helped me to understand why I was f e e l i n g g u i l t y about my daughter " . "He always takes the time to ' t a l k ' to u s " . "She is very i n t e re s t ed in our c h i l d " . Neutra l : " A l l he d id was r e f e r us to an eye s p e c i a l i s t " . "He ran a l o t of t e s t s but noth ing came out of them". Impeding : "She t o l d us our c h i l d was dumb and would never do wel1 in s c h o o l " . " They ' r e a l l quacks; no one r e a l l y cares about y ou " . "He gave us the f e e l i n g that th ings were hope le s s " . Both the content of the response and the expres s ion of a f f e c t accompanying i t were inc luded in the i n te rv iewer ' s judgment about which category would best desc r ibe the pa ren t ' s f e e l i n g s about the con tac t . The i n te r v i ew schedule concluded w i th a number of open-ended quest ions regard ing s e r v i c e s . These responses were not coded at that t ime. The parents were then asked to est imate t h e i r c h i l d ' s i n t e l l e c t u a l - 17 -a b i l i t i e s . The ac tua l quest ion is not noted on the form: "do you th ink act s 1 ike a year o l d " , "what age would you say he is more 1 ike t h e n " . The above quest ion was asked f i r s t but in almost a l l cases , f u r t h e r probe quest ions were necessary. Parents tended to q u a l i f y t h e i r responses ("In some ways he i s o l d e r , in o t h e r s . . . " ) . In such cases they were asked to es t imate the average age t ak i ng into c on s i de r a t i on a l l the aspects of h i s f u n c t i o n i n g they had in mind. A s e l f - a d m i n i s t e r e d ques t i onna i re (Appendix D) was then given to each parent to be f i l l e d out before the i n te rv iewer l e f t . The quest ions i n c l uded : f e l t need f o r s pec i a l he lp and an assessment of the extent to which the f a m i l y and p ro fe s s i ona l persons had given the c h i l d the he lp he had needed over the yea r s . By i n c l ud i n g t h i s s e l f - a d m i n i s t e r e d que s t i onna i r e a f t e r the i n t e r v i ew , i t was hoped that the preceding d i s -cuss ion would have helped parents to reach some conc lus ions regard ing needs and s e r v i c e s and that t h e i r responses to these quest ions would a c c u r a t e l y r e f l e c t t h e i r exper iences and f e e l i n g s . The i n te r v i ew was concluded by a b r i e f summing up by the i n te rv iewer and any quest ions the parents had were d e a l t w i th at that t ime. A r a t i n g instrument was developed to be completed by the i n te rv iewer a f t e r l e av i ng the parents (Appendix E ) . There were four items in t h i s inst rument: awareness of degree of r e t a r d a t i o n , understanding of the r e t a r d a t i o n (cause, prognoses, e t c ) , pa ren t s ' emotions when d i s cu s s i n g the c h i l d and h i s d i f f i c u l t i e s , and acceptance of the c h i l d . The i n t en t i o n of these items is to assess how r e a l i s t i c parents are about t h e i r c h i l d ' s a b i l i t i e s and to compare t h i s w i t h the he lp they have rece ived over the yea r s . A high c o r r e l a t i o n is expected between the f i r s t two items of - 18 -the r a t i n g instrument and the correspondence of the pa ren t s ' e s t imates of the c h i l d ' s I.Q.. to h i s ac tua l I.Q.. Two a d d i t i o n a l instruments were used. The f i r s t was a shor t que s t i onna i re (Appendix F) sent to teachers of the c h i l d r e n in the i n t e r -viewed sample. The three quest ions asked (Pa ren t s ' language, c h i l d ' s behavior in c l a s s , and number of parent - teacher contact s dur ing the 1966-1967 school year) r e l a t e d to three suspected reasons why parents may not have vo lunteered to be i n te rv iewed. The c h i l d ' s behavior in c l a s s may r e f l e c t the s e v e r i t y of the d i f f i c u l t i e s parents were f a c i n g and the number of contact s may r e f l e c t parenta l anx i e t y about the c h i l d ' s school performance. The second instrument (Appendix G) was used in c o l l e c t i n g and coding in fo rmat ion from the School Board records (the interv iewed sample, con t ro l group and r e fu sa l groups were a l l inc luded he re ) . P lan f o r Data A n a l y s i s : The data from a l l sources ( i n t e r v i e w s , reco rd s , e t c . ) were coded and punched on ca rd s , one set of cards f o r each c h i l d . The in format ion was analyzed and desc r ibed in the four main areas s p e c i f i e d e a r l i e r . The f i n d i n g s were then assessed to determine the extent to which they had been ab le to answer the research quest ion under s tudy. A number of quest ions were r a i s ed dur ing the i n i t i a l stage of data a n a l y s i s about the major assumption accepted at the beginning of t h i s s tudy, that he lp - seek ing and need-meeting are p rec ipa ted by the c h i l d ' s performance and/or behav io r . A second stage of a n a l y s i s was undertaken to examine t h i s assumption more c l o s e l y . He lp - seek ing by parents and need-meeting by p ro fe s s i ona l persons both begin w i th some awareness of a problem - 19 -or d i f f i c u l t y concern ing the c h i l d . One v a r i a b l e in t h i s study l e n t i t s e l f r e a d i l y to an examinat ion of awareness in parents of some problem concern ing the development of the c h i l d ; the sample was almost e q u a l l y s p l i t between those parents who became aware of some d i f f i c u l t y concern ing the c h i l d before the c h i l d was two and a ha l f years o l d and those who became aware of something a f t e r the c h i l d was two and a ha l f years o l d . A general quest ion was f o rmu la ted : i s e a r l y r e c o g n i t i o n (before age 2^) a s soc i a ted w i th s pec i a l c h a r a c t e r i s t i c s of the c h i l d , s pec i a l c h a r a c t e r i s t i c s of the parent or c h a r a c t e r i s t i c s of the f i r s t p ro fe s s i ona l he lp r e c e i v e d . Hypotheses were then developed to t e s t t h i s que s t i on . A cau t i ona ry note must be i n t roduced: awareness almost c e r t a i n l y precedes he lp - seek ing ( s e l f i n i t i a t e d contacts by parents ) but he lp - seek ing need not always f o l l o w awareness. Understanding and acceptance of the c h i l d ' s l i m i t a t i o n s would a l s o be preceded by awareness. E a r l y awareness would g ive parents both more time before the c h i l d enter s school w i t h i n which to ad jus t to the c h i l d ' s d i f f i c u l t i e s and more o p p o r t u n i t i e s to seek help before he enter s s c h o o l . The quest ion was f o rmu la ted : is e a r l y r e c o g n i t i o n a s soc i a ted w i t h l a t e r adjustment of parents to the c h i l d ' s school and community exper ience? Hypotheses were developed to t e s t t h i s que s t i on . The i n te r ven ing v a r i a b l e , s e r v i c e s r e c e i v e d , was not t e s t e d ; q u a l i t a t i v e measures of t h i s v a r i a b l e were not a v a i l a b l e . R e l i a b i l i t y and V a l i d i t y : Measurement of r e l i a b i l i t y was d i r e c t l y a f f e c t e d by the study design chosen f o r the p r o j e c t . The e xp l o r a t o r y design aims to generate hypotheses ra ther than to t e s t them; r e l i a b i l i t y is of secondary c o n s i d e r a t i o n . - 20 -R e l i a b i l i t y was increased by us ing the i n te rv i ew method of data c o l l e c t i o n ins tead of c o l l e c t i n g second-hand data about pa ren t s ' a c t i o n s . In regards to judgments made in reco rd ing data ( p a r t i c u l a r l y the pa ren t s ' f e e l i n g s about s e r v i c e s rendered) r e l i a b i l i t y was increased both by the use of on ly one i n te r v i ewer and by the anchor ing d e f i n i t i o n s . V a l i d i t y has been assessed in respect to the a b i l i t y of t h i s study to answer the research quest ion on the bas i s of the f i n d i n g s . This study assumed that the c h i l d r e n in the Spec ia l c l a s se s would have had a h i s t o r y of d i f f i c u l t i e s and of parenta l he lp - seek ing responses; t h i s assumption was supported by the t h e o r e t i c a l f o rmu l a t i on and was v e r i f i e d by the f i nd i ngs. - 21 -Chapter 3 De s c r i p t i o n of Sample: Three groups were chosen f o r the study; 65 f a m i l i e s to be i n t e r -v iewed, 100 c h i l d r e n to act as a comparison group, and 87 c h i l d r e n (whose parents refused the i n te rv iew) as a second comparison group. The sample chosen f o r i n te rv i ew d id not d i f f e r markedly from e i t h e r the con t r o l group or the r e fu sa l group w i th respect to sex, age or I.Q.. t e s t performance. TABLE I. Percentage Table of Ages of the Ch i l d ren in the Three Groups * 6 to 10 years 11 to 15 y r s . 16 to 20 y r s , Tota l Number 1 nterv iewed group 24.5 60.6 13.1 65 Control group 27 43 24 100 Refusal group 21 .9 63.2 13.7 87 « C o l l e c t e d from the Vancouver School Board Records The con t r o l group inc luded a l a r ge r number of o lde r teenagers (24%) as compared w i th 13% in the other two groups. That there is an under-r ep re sen ta t i on of o lde r teenagers in the interv iewed group may r e f l e c t the a t t i t u d e s of parents ; they perhaps f e l t that the p ro jec t and i n te r v i ew would not be r e l e van t to t h e i r c h i l d ' s age and s tage. - 22 -TABLE I I. Percentage Table of Sex of the Ch i l d r en in the Three Groups * Male Female Total. Number Interviewed group 70.4 29.5 65 Contro l group 61 39 100 Refusal group 51.7 48.2 87 * From Vancouver School Board Records There was a higher r ep re sen ta t i on of females in the two groups wfttch were not interv iewed, e i t h e r r e f u s i n g consent or not acknowledging the l e t t e r a t a l l . One might propose a t e n t a t i v e exp l ana t i on to account f o r t h i s d i f f e r e n c e . Boys, i t appears, are over - represented in almost every problem group in our s o c i e t y ( j u v e n i l e de l inquency, emot i ona l l y d i s tu rbed c h i l d r e n to name on ly two). One might wonder whether boys would a l s o be over - represented in a group of m i l d l y retarded c h i l d r e n whose f a m i l i e s are expe r i enc ing some d i f f i c u l t y . If t h i s was the case, parents of these boys might be qu icker to consent to an i n t e r v i ew , a n t i c i p a t i n g an oppor tun i t y to e i t h e r g ive or r ece i ve in format ion which w i l l be of use to them. Those parents consent ing to the i n te r v i ew may a c t u a l l y be expe r i enc ing more severe d i f f i c u l t i e s than those parents who refused to be i n te r v i ewed . - 23 -TABLE 11 Iv Percentage Table of I.Q.. Scores of the Ch i l d r en in the Three Groups * 50 - 59 60 - 69 70 - 79 80 - 89 90 - 99 100 - 109 Interviewee group 11.4 14.7 45.9 19.3 3.2 Control group 5 24 33 22 5 Refusal group 1.1 22.9 50.5 22.9 1.1 * Recorded in May, 1967 in Vancouver School Board Records D i f f e rences w i t h respect to I.Q,. t e s t performance are s l i g h t . There were three other items on which the interv iewed sample and the con t r o l group were compared: language spoken by parents , c h i l d ' s behavior in c l a s s (as reported by the t ea che r ) , and the number of parent - teacher contact s f o r the school year 1966 - 1967- There was no rea l d i f f e r e n c e between these two groups w i t h respect to the language spoken at home by parent s . This f i n d i n g reduced the p o s s i b i l i t y that parents had refused to be interv iewed because they were unable to speak Eng l i s h wel l enough ( there were a c t u a l l y some in the interv iewed sample whose Eng l i s h was m in ima l ) . With respect to the c h i l d ' s behavior in the classroom there was again very l i t t l e d i f f e r e n c e . - 24 -TABLE IV.' Frequency D i s t r i b u t i o n of the C h i l d ' s Behavior in C lass * good average poor incons i s t e n t unknown 1nterv iewed group 26 20 k 3 8 Contro l group 31 43 9 17 * As reported by the teachers Ne i ther group conta ins many c h i l d r e n in the poor behavior range. The number of parent - teacher s conferences d i f f e r e d somewhat between the two groups; a p r o p o r t i o n a t e l y l a rge r number of the parents in the con t r o l group have no contacts a t a l l . TABLE V.: Number of Parent - teacher Conferences * none once twi ce 3-4 times more than 4 unknown 1nterviewed group .7 10 9 20 6 9 Contro l group 26 15 17 7 12 23 * As reported by the teachers Further i d e n t i f y i n g in format ion was gathered dur ing the in terv iews w i th the parents of those c h i l d r e n chosen f o r s tudy. This in format ion was compared to the Vancouver census t r a c t in format ion f o r the year 1961. - 25 -The d i s t r i b u t i o n of occupat ions among the f a the r s in the sample corresponded very c l o s e l y to the d i s t r i b u t i o n of occupat ions in the male popu la t ion in Vancouver c i t y . TABLE V I P e r c e n t a g e D i s t r i b u t i o n of Occupations of the Fathers in the Sample Compared w i th Labor Force S t a t i s t i c s * * profess ional manager i a l c ]e r i ca l sa le s s e r v i c e r ec rea t ion labor * t o t a l number Sampl e 22.2 12.9 12.9 51 .8 54 Census t r a c t data 22.0 16.5 M.I h 7.0 103,301 * The data c o l l e c t e d f o r the interv iewed sample d i d not d i f f e r e n t i a t e between u n s k i l l e d , s e m i - s k i l l e d and s k i l l e d labor and pr imary, t r an spo r t or communication occupat i on s . ** 1961 Census of Canada, Dominion Bureau of S t a t i s t i c s , c h a r a c t e r i s t i c s labor f o r c e popu l a t i on , males. Three of the men interv iewed were r e t i r e d (not inc luded in the Table) and twelve of the mothers were work ing, mainly in s e r v i c e occupat ions . A comparison of educat ions of the parents in the study and the general popu la t ion of adu l t s no longer in school again showed 1i t t l e d i f f e r e n c e . - 26 -TABLE V I I . Percentage D i s t r i b u t i o n of Educat ions ; Interviewed Sample and General Popu la t ion no school elementary 1 - 2 y r s . high school 3 - 4 y r s . high school unI v e r s i ty Sample 1.7 14.8 28.7 46.0 8.7 Census t r a c t data 13.1 27.7 19.3 30.4 8.6 More of the parents had gone i n to and completed high s choo l ; the same percentage had attended u n i v e r s i t y as in the general p opu l a t i on . ^here were three f o s t e r and two adopted c h i l d r e n in the sample. The m a j o r i t y (42) of the c h i l d r e n had one, two, or three s i b l i n g s , f i v e were on ly c h i l d r e n , e i gh t had four s i b l i n g s and f i v e had s i x or more s i b l ings. TABLE VII Iy D i s t r i b u t i o n s of Mothers ' Ages a t the Time of the C h i l d ' s B i r t h 15 - 19 20 - 24 25 - 29 30 - 34 35 - 39 40 - 44 45 - 49 4 11 16 15 11 3 1 Ju s t over one-quarter of the mothers were t h i r t y - f i v e years or o lde r when the c h i l d was born. This f i n d i n g is in keeping w i th in format ion regard ing the ages of mothers of the more seve re l y retarded i n fan t (24). - 27 -The c h i l d r e n and parents s e l e c ted f o r i n te rv i ew then, would not seem to be extremely d i f f e r e n t from the popu la t ion of c h i l d r e n in s pec i a l c l a s s e s : an under representat ion of o lde r teenagers might be expected; t h e i r I.Q.. t e s t performances are very s i m i l a r to the con t ro l group and t h e i r behavior as reported by teachers would not i n d i c a t e that they present a g reater number of problems in the school than the con t r o l group. However, i t was the parents who consented to the i n t e r v i ew , mot i va ted, one might s pecu l a te , by f e e l i n g s of needing he lp or i n f o rmat i on . That the interv iewed parents had a g reater number of conferences w i t h the teachers adds to the s u sp i c i on that they are more anxious and/or more i n c l i n e d to t a l k to other people about t h e i r c h i l d ' s performance than the con t ro l group. It is d i f f i c u l t to say to what extent the a t t i t u d e s and exper iences of t h i s study group w i l l represent those held and exper ienced by the r e s t of the parents of c h i l d r e n in the s pec i a l c l a s se s (and a l l the m i l d l y retarded c h i l d r e n who are not in the s pec i a l c l a s s and t h e i r pa ren t s ) . - 28 -Chapter k  F i nd i nqs The data to be presented here p e r t a i n s , f o r the most pa r t , to that in fo rmat ion c o l l e c t e d from the mothers (N=6l). It was f e l t that mothers were the most r e l i a b l e source of f a c t u a l in format ion p e r t a i n i n g to the c h i l d ' s development. Only in areas of op in ion or a t t i t u d e w i l l the f a t h e r s ' responses be p r i n t e d . For a d i s cu s s i on of the i n t e r v i ews , see Appendix A. H i s t o r y of the C h i l d ' s Development: Parents were asked to remember the f i r s t time they not i ced something about t h e i r c h i l d which caused them some concern. This quest ion was asked in the l a t t e r h a l f of the i n te r v i ew f o l l o w i n g quest ions about the c h i l d ' s s c h o o l , home and community exper iences and d i f f i c u l t i e s . A l l of the parents responded to t h i s ques t ion and t h e i r responses were as fo l1ows: TABLE IXy Age of C h i l d when Parents F i r s t Not iced Something which Caused them some Concern B i r t h - 1 year 1 - 2i y r s . 2 i - 5 y r s . 6 - 11 y r s . 11 18 17 In ten cases mothers r e c a l l e d an e a r l i e r age than f a t h e r s . Parents were asked to s p e c i f y the problem which they had perce ived at t h i s t ime. The - 29 -preceding d i s cu s s i on s throughout the i n te rv iew centered around the c h i l d ' s performance and behav ior ; i t was hoped that t h i s would be the pa ren t ' s frame of re ference when he answered t h i s present que s t i on . TABLE X. Nature of the I n i t i a l Problem F e l t by Parents Concerning t h e i r C h i l d B i rth -1 y r . 1-2^ y r s . 2£-5 y r s . 6-11 y r s . med i c a l 8 2 3 1 ' performance * 3 12 7 11 behavior I 5 1 mult i pi e problems 3 1 don ' t know 2 * In the young c h i l d t h i s r e f e r s to developmental l a g s , in the o l de r c h i l d i t r e f e r s to l e a r n i n g d i f f i c u l t i e s in s c h o o l . Medical problems in the b i r t h to one year range r e f e r in a l l cases to e i t h e r a b i r t h de fec t or se r ious i l l n e s s occur ing immediately a f t e r b i r t h . As the above t ab l e represents vo lunta ry comments made by the parents , i t is assumed that the medical problems mentioned are connected in the pa ren t s ' minds w i t h l a t e r performance and/or behav iora l c h a r a c t e r i s -t i c s of the c h i l d which were p r e v i ou s l y d i scussed in the i n t e r v i e w . As Table X i n d i c a t e s , the l a r g e s t number of parents were a l e r t e d by the c h i l d ' s f a i l u r e to perform at some expected l e v e l . Those parents n o t i c i n g something when the c h i l d was a t odd le r spoke of the c h i l d ' s f a i l u r e to - 30 -walk or t a l k when the parents expected them to do so. The one behav iora l problem perce ived dur ing t h i s stage was of i n t e r e s t ; the parent s t a ted that the c h i l d had " r e f u s e d " to speak. The behavior problems perce ived in the preschool stage r e l a t e d mainly to over-dependency, h y p e r a c t i v i t y and problems in peer r e l a t i o n s . The f i r s t person parents t a l ked to about t h e i r su sp i c i on s was in most cases a doctor (30) or a teacher (23) . A f t e r t h i s f i r s t contact parents were asked to r e c a l l each subsequent he lp - seek ing c on t a c t . This method of a i d i n g r e c a l l obscured, in many cases, the problems p re -c i p i t a t i n g the he lp - seek ing responses. One can on ly i n f e r from the type of he lp sought, what the pa ren t s ' percept ions of the problems may have been. The f o l l o w i n g t ab l e i l l u s t r a t e s the k ind of he lp sought by the parents a t var ious stages in t h e i r c h i l d ' s development. TABLE XI „i P ro fe s s i ona l Help Sought by Parents phy s i c i an or ch i1d s p e c i a l i s t teacher or p r i n c i p a l other more than one * t o t a l B i r t h - 1 y r . 11 11 1-2-i y r s . 18 2 20 2^-5 y r s . 15 3 k 3 25 6-11 y r s . 2 24 3 31 60 12-19 y r s . 3 5 6 14 * This category does not o ve r - l a p w i th the other c a t e g o r i e s , c h i l d r e n in t h i s category and t h e i r parents in most cases saw a teacher and one or two other p r o f e s s i o n a l s . - 31 -This t a b l e does not d i f f e r e n t i a t e .between those parents seeking he lp f o r the f i r s t time and those subsequent contacts made by some parents ( t h i s accounts f o r the l a rge t o t a l s in the r i g h t hand column). It on ly i l l u s t r a t e s , in a very general way, the type of he lp parents cons ider app rop r i a te a t var ious stages in the c h i l d ' s development. Help rece ived from more than one source cou ld r e f l e c t e i t h e r an increase in the v a r i e t y of he lp made a v a i l a b l e to the parents or some confus ion as to which type of he lp was a p p r o p r i a t e . Parents , i t seems, tended to look le s s to the f a m i l y doctor f o r he lp once the c h i l d was in s c h o o l . A f t e r the c h i l d was in s c h o o l , however, the parents o f ten seek he lp (or are r e f e r r e d ) to p r o f e s s i ona l s out s ide of the school system. TABLE XI I. Pa ren t s ' Fee l ings about Help Received * support ive neutra l imped i ng mixed t o t a l birth-1 y r . 2 5 2 2 11 1-2^ y r s . 6 6 8 20 2i-5 y r s . 6 6 10 3 25 6-11 y r s . 13 12 10 25 60 12-18 y r s . 3 3 k k * See re ference to L i l l i a n R i p p l e ' s c a t e g o r i e s . - 32 -There was a gradual increase in the p ropor t i on of those parents f i n d i n g the contact s to be impeding p r i o r to school ent rance. The mixed reac t i on s r e f e r s on ly to those parents having more than one contact (with the same p ro fe s s i ona l or w i th d i f f e r e n t p r o f e s s i o n a l s ) . So f a r , noth ing has been s a i d about those parents who recognized some problem but d id not seek any he l p . Eleven parents p e r c e i v i n g problems in the c h i l d ' s t odd le r stage d id not seek any help dur ing that stage and e i gh t d id not seek any help dur ing the preschool years when problems arose in that s tage. A d i f f i c u l t y in d e f i n i t i o n s a r i s e s here. Parents were asked to r e c a l l the e a r l i e s t posmt in t h e i r c h i l d ' s deve lop-ment when they perce ived something which caused them some concern. Parents who perce ived something d i f f e r e n t about the c h i l d which caused them some concern but d i d not seek any he lp po s s i b l y d id not f e e l that a problem had a r i s e n . In such r e t r o s p e c t i v e da ta , t h i s information may be more l i k e h i n d s i g h t , percept ions based on i n te rven ing expe r i ence . A number of parents sought he lp from many p ro fe s s i ona l persons. Those parents who sought he lp from more than three sources were s i n g l ed out , dur ing a n a l y s i s of da ta , f o r c l o s e r i n s p e c t i o n . Such a c u t - o f f po in t is a r b i t r a r y and no in format ion is a v a i l a b l e to he lp d i f f e r e n t i a t e between those contact s parents deemed h i gh l y s i g n i f i c a n t and those they d i d not . Nineteen parents f a l l i n to t h i s category . Inspect ion of these pa ren t s ' forms was made to determine whether m u l t i p l e contacts r e f l e c t e d some c h a r a c t e r i s t i c of parent, of c h i l d or of the f i r s t p ro fe s s i ona l c on tac t . Few of these 19 parents found t h e i r f i r s t contact w i th a p r o f e s s i ona l person to be suppor t i ve (4 ) , f i v e found i t neut ra l and ten found i t to be impeding. One might specu late then, that the f i r s t - 33 -contact parents have w i l l i n f l uence subsequent he lp - seek ing attempts ( that they w i l l tend to seek more i f the f i r s t one is impeding). The f i g u r e s f o r these n ineteen parents were compared w i t h those of the parents having fewer than three p ro fe s s i ona l contact s over the yea r s . TABLE XIII.. Pa rent s ' Fee l i ng s about F i r s t Help Received and Subsequent Frequency of He lp- seek ing Contacts  Ho r i zon ta l Percentage Table 1 or 2 contact s 3 or more contacts F i r s t contact Support ive 69 31 Neutral 80 20 Imped i ng 57 43 The t ab l e i nd i ca ted a s l i g h t t rend in the d i r e c t i o n of an increased number of contact s i f the f i r s t contact was impeding. The f a t h e r ' s educat ion d i d seem to be an important f a c t o r i n f l u e n c i n g the number of he lp - seek ing responses made by parent s . While on ly 54% of the whole sample had f i n i s h e d grade 10 or h i ghe r , 78% of these 19 f f a the r s had completed grade 10 or h i ghe r . The I.Q.. of the c h i l d does not appear to be a s soc i a ted w i th the number of p ro fe s s i ona l contact s made by the parents (73% of the c h i l d r e n in the whole sample had I.Q..'s recorded at le s s than 79, 73% of the nineteen c h i l d r e n were a l s o in t h i s - 34 -lower range) . These l a t t e r two f i n d i n g s d id not support the assumption made by t h i s s tudy: that he lp - seek ing by parents is on the bas i s of performance and/or behav iora l c h a r a c t e r i s t i c s of the c h i l d . - A c l o s e r examinat ion of t h i s assumption w i l l be given l a t e r in t h i s s tudy. C h i l d ' s Entrance i n to the Spec ia l C l a s s : The most d i f f i c u l t problem encountered in t h i s study was the gather ing of in format ion about the c h i l d ' s performance and behav io r . The f o l l o w i n g f i n d i n g s throw a l i t t l e more l i g h t on t h i s aspect of the research que s t i on . A l l of the c h i l d r e n in the sample had at l e a s t one exper ience in common: t h e i r entrance in to the Spec ia l c l a s s . More d e t a i l e d in format ion w i l l be presented here regard ing the pa ren t s ' percept ions of t h i s event . At the time the i n te r v i ew was conducted (summer of 1967), 37 of the c h i l d r e n had been in the c l a s s three years or l e s s , 18 had been in the c l a s s four to seven years and s i x c h i l d r e n had been in the c l a s s from 9 to 12 years ( t h i s is the Spec ia l c l a s s ) . The ages of the c h i l d r e n when they entered the c l a s s ranged somewhat; po s s i b l e r e l a t e d to a gradual s l i p p i n g behind the other c h i l d r e n in the regu la r c l a s s at an uneven r a t e . TABLE XIV. Ages of Ch i l d ren at Time of Entrance i n to the Spec ia l Class Age 6 7 8 9 10 11 12 13 14 7 18 13 9 7 0 2 2 2 35 -The l a s t c l a s s attended by the c h i l d r e n before the t r a n s f e r was as f o l 1ows: TABLE XV.' Last Regular C lass Attended by the Ch i l d ren Kindergarden Gr. 1 2 3 k 5 6 could not remember 13 19 12 10 3 1 2 1 It appears from Tables XIV and XV that a t l e a s t s i x c h i l d r e n stayed in k indergarden u n t i l seven years of age; there were two instances where the c h i l d had attended kindergarden and then dropped out f o r one year before beginning elementary s c h o o l . Compulsory school attendance is not enforced u n t i l age seven, so that one might expect cons ide rab le v a r i a t i o n in the pre-e lementary school exper iences of the c h i l d r e n . Pa ren t s ' percept ions of t h e i r c h i l d ' s behavior or performance which led to the t r a n s f e r from regu la r to Spec ia l c l a s s focused on the performance. F i f t y - t w o percent (52%) of the parents f e l t that the c h i l d had l e a r n i n g d i f f i c u l t i e s , 36% i nd i ca ted both l e a rn i n g and behav iora l problems and 3% s t a ted that the d i f f i c u l t y had been behav iora l d i s tu rbance o n l y . The behav iora l d i s tu rbance most o f ten mentioned was r e l a t e d to peer r e l a t i o n s of the c h i l d in the regu la r c l a s s . Mothers, in 13 cases, regarded t h i s t r a n s f e r as more se r ious than d i d f a t h e r s . Many of the parents spoke of a f e e l i n g of he lp les snes s in regards to t h e i r c h i l d ' s d i f f i c u l t i e s in s choo l , (mentioning the new teach ing methods which were a l i e n to themselves, making i t very d i f f i c u l t ' to help the c h i l d a t home). - 36 -Pa ren t s ' f e e l i n g s about t h e i r c h i l d ' s performance and behavior in the c l a s s are sometimes expressed to the teachers dur ing parent -teacher conferences . Parents were asked about t h e i r contact s w i th the regu la r c l a s s teacher before the c h i l d was t r a n s f e r r e d to the Spec ia l c l a s s . T h i r t y - t w o parents reported that they had v i s i t e d w i t h the teacher one or two t imes , t h i r t e e n reported three to four v i s i t s , s i x reported more than f o u r , nine s ta ted that they had not seen the teacher a t a l l and one could not r e c a l l i f they had seen the teacher . The parents tended to f e e l very s t r ong l y about these c o n t a c t s : 20 found them impeding, 19 found them neut ra l and 17 found them to be s uppo r t i v e . The l a rge number of parents i n d i c a t i n g d i s s a t i s f a c t i o n cou ld r e f l e c t both a feeling of he lp les snes s regard ing the c h i l d ' s educat ion or r e l u c tance on the part of parents to accept the c h i l d ' s l i m i t e d a b i l i t i e s . Some parents were angry because the c h i l d was not being placed in a Spec ia l c l a s s soon enough, others because Spec ia l c l a s s placement was even being cons ide red . Parents were asked to remember who had i n i t i a t e d the move towards Spec ia l c l a s s placement. Fourteen mothers s t a ted that they (the parents) had i n i t i a t e d the move; kk i nd i ca ted the s choo l , and 2 i d e n t i f i e d a p s y c h i a t r i s t as having f i r s t recommended the move. Parents reported the age of the c h i l d when the Spec ia l c l a s s p l a ce -ment was f i r s t d i scussed (with school per sonne l , or in two cases, the p s y c h i a t r i s t , in four cases the f a m i l y p h y s i c i a n , and in s i x cases w i th a p u b l i c hea l th nu r se ) . This age d i s t r i b u t i o n was compared w i th the d i s t r i b u t i o n of ages of the c h i l d r e n a t time of en t ry in to the c l a s s . - 37 -TABLE XVI.' Comparison of Age D i s t r i b u t i o n s ; when the Spec ia l C lass was f i r s t Discussed and when the Placement was Made Age 5 6 ; 7 8 9 10 11 12 13 14 F i r s t d i scussed 2 13 13 11 10 5 3 1 2 1 T i me of ent ry 7 18 13 9 7 0 2 2 2 The time l ag seen here cou ld r e l a t e to a number of t h i n g s : pa ren t s ' r e l uc tance to have the c h i l d placed in the c l a s s , contact s of parents w i t h p r o f e s s i ona l s ou t s ide of the school or perhaps a l ack of space in the Spec ia l c l a s s e s . The pa ren t s ' f e e l i n g s about the i n i t i a l d i s c u s s i o n regard ing the Spec ia l c l a s s tended to be more p o s i t i v e than t h e i r feelings expressed about contact s w i t h the regu la r c l a s s teacher : 27 found i t s uppo r t i ve , 20 found i t neut ra l and 13 spoke of i t as impeding. . Many of the parents reported that they had d i scussed the placement w i t h a t l e a s t one other person. Nineteen parents had no f u r t h e r contact s regard ing the placement, 19 had one other con tac t , 11 had two more c on t a c t s , 7 had three more contacts and f i v e had four or more. These other contact s inc luded 23 school personnel (the p r i n c i p a l in most ca se s ) , 10 phy s i c i a n s , 19 s o c i a l s e r v i c e personnel ( i n c l u d i n g psych-o l o g i s t s and p u b l i c hea l th nurses) and 11 p s y c h i a t r i s t s . The number of p s y c h i a t r i s t s and p sycho log i s t s r e f l e c t s the s c h o o l ' s p r a c t i c e of making r e f e r r a l s to the Me t r opo l i t an Health Se rv i ce of Vancouver f o r assessments. The ten phys i c i ans reported one might suppose would be the f a m i l y doc to r . - 38 -Present Home, School and Community Adjustment of C h i l d : In a s se s s ing t h e i r c h i l d ' s cu r rent school performance, the mothers ' r a t i n g s were as f o l l o w s : TABLE XVI l y C h i l d ' s Present Performance and Behavior good average poor dont 1 know Academic work 12 k] 7 1 Re l a t i on s w i th 13 37 10 1 peers Re l a t i o n w i th 22 36 3 teacher Fathers tended to ra te the c h i l d ' s performance and behavior a l i t t l e h igher than the mothers. Mothers ' e s t imates of t h e i r c h i l d ' s f e e l i n g s about the Spec ia l c l a s s were as f o l l o w s : 13 f e l t t h e i r c h i l d l i k e d the c l a s s , 30 f e l t that t h e i r c h i l d was not a l t o ge the r happy in the c l a s s and 17 f e l t that t h e i r c h i l d s t r ong l y d i s l i k e d the c l a s s . Reasons g iven f o r the l a t t e r group i nc l uded : acute f e e l i n g s of s t i g m a t i z a t i o n , i n f e r i o r i t y , and boredom w i th the c u r r i c u l u m . The extent to which these report s r e f l e c t the c h i l d r e n ' s or the pa ren t s ' f e e l i n g s is imposs ib le to determine. Pa ren t s ' repor t s of t h e i r own f e e l i n g s d i f f e r e d however: 28 f e l t that the Spec ia l c l a s s was very good f o r the c h i l d , nine f e l t that the c l a s s was a c t u a l l y harmful f o r the c h i l d and 2k were u n c e r t a i n . Parents were asked about the v i s i t s they had had w i th the Spec ia l c l a s s - 39 -teacher ; a l l but four of the parents found the v i s i t s to be s uppo r t i v e . Ten parents i nd i ca ted that they would l i k e to have more o p p o r t u n i t i e s to v i s i t w i t h the teacher ; the r e s t were s a t i s f i e d w i t h the frequency of c o n t a c t s . The anx i e t y f e l t by parents towards t h e i r c h i l d ' s performance in school seems to subside then, once the c h i l d has been p laced in the Spec ia l c l a s s . Parents were asked: "How is your c h i l d behaving a t home?" The i r responses were ca tego r i zed by the i n te rv iewer as f o l l o w s : TABLE XVI I 1ft C h i l d ' s Behavior in Home good s i b l i n g r i v a l r y aggress ion d e l i nquency dependency d i s c i p l i n e problems 26 1 1 2 1 8 wi thdrawal mult i pi e problems h y p e r a c t i v i t y , moody d i s t r a c t i b i 1 i t y , low f r u s t r a t i o n t o l e rance * 2 10 10 * This l a s t category was added to the coding sheet a f t e r the i n te rv iewer had heard severa l parents r e p o r t i n g such behav ior ; parents r e p o r t i n g one of these problems i n v a r i a b l y mentioned the o t he r s . Such a c l u s t e r of behav iora l t r a i t s suggests b r a i n damage. Well over h a l f of the mothers then, spoke of some behavior problem in the home. Parents were then asked "How is g e t t i n g a long in the neighbourhood". Twenty-seven of the parents s t a ted that t h e i r c h i l d had no f r i e n d s , twenty-two reported no problems, s i x reported agg re s s i on , - 4o -two r e p o r t e d d e l i n q u e n c y , two spoke o f w i t h d r a w a l and two c h i l d r e n were r e p o r t e d as h a v i n g m u l t i p l e problems i n the community. These r e p o r t s o f b e h a v i o r i n the home and community a r e not c o n s i s t e n t w i t h p a r e n t s ' r e p o r t s o f the c h i l d ' s b e h a v i o r i n the c l a s s ( o r f o r t h a t m a t t e r , the t e a c h e r ' s assessment o f the c h i l d ' s b e h a v i o r ) . There appear t o be more problems i n the home and community than i n the s c h o o l . These r e p o r t e d b e h a v i o r c h a r a c t e r i s t i c s of the c h i l d r e n i n the home and community may e x p l a i n the s u b s t a n t i a l number of h e l p - s e e k i n g c o n t a c t s ( o t h e r than w i t h s c h o o l p e r s o n n e l ) made by the p a r e n t s o f the s c h o o l - a g e c h i l d . T h i r t y p a r e n t s spoke o f t h e i r c h i l d h a v i n g j o i n e d some community r e c r e a t i o n a c t i v i t y i n the s c h o o l '66 t o '67. In a l m o s t a l l c a s e s , however, the c h i l d had j o i n e d an a c t i v i t y and then dropped out b e f o r e t h e end of the y e a r . Few had s u c c e s s f u l l y c ompleted a y e a r o f r e c r e a t i o n a c t i v i t y i n a peer group. About t e n p a r e n t s had p a r t i c i p a t e d i n some r e c r e a t i o n a l a c t i v i t y w i t h t h e i r c h i l d but t h i s tended t o be s p o r a d i c . A number o f p a r e n t s were c o n c e r n e d because the c h i l d p r e f e r r e d t o p l a y w i t h c h i l d r e n younger than he was. P a r e n t s were asked t o e s t i m a t e t h e i r c h i l d ' s l e v e l o r s t a g e o f development ( c o n s i d e r i n g both s o c i a l and i n t e l l e c t u a l d e v e l o p m e n t ) . These e s t i m a t e s ( i n y e a r s ) were c o n v e r t e d i n t o I.Q,. s c o r e s by u s i n g the f o r m u l a : e s t i m a t e d age v 1 nn ( t n e 'formula and method i s the c h r o n o l o g i c a l age same as t h a t used by Schulman and S t e r n (17) ) . Twelve mothers were not a b l e t o e s t i m a t e a t a l l ( c o u l d not be persuaded t o e s t i m a t e ) . Schulman and S t e r n d i d not r e c o r d t h i s problem ( t h e i r s t u d y was w i t h the more s e v e r e l y r e t a r d e d c h i l d and t h e i r p a r e n t s ) . T h i s l e f t 49 mothers; - 41 -Schulman and S t e r n had 50 i n t h e i r sample. The p a r e n t "I.Q.." was subtracted f r o m t h e t e s t I.Q.. ( f r o m the School Board R e c o r d s ) l e a v i n g t h e d i f f e r e n c e . The a v e r a g e d e v i a t i o n was 12.9 p o i n t s , from the t e s t I.Q.. The Schulman and S t e r n s t u d y found the a v e r a g e d e v i a t i o n t o be 9.9. In 31 c a s e s mothers o v e r e s t i m a t e d t h e i r c h i l d ' s mental a b i l i t i e s by an a v e r a g e o f 15.4 I.Q.. p o i n t s , whereas i n 16 c a s e s the mothers u n d e r e s t i m a t e d by an a v e r a g e of 8.06 p o i n t s . Schulman and S t e r n found t h a t i n 23 c a s e s p a r e n t s o v e r e s t i m a t e d by an average of 12.6 I.Q.. p o i n t s and i n 19 c a s e s u n d e r e s t i m a t e d by an average of 10.7 I.Q.. p o i n t s . They f o u n d o n l y f o u r cases where the p a r e n t s ' e s t i m a t e s exceeded the t e s t I.Q.. by more than 20 p o i n t s ; t h e r e were e i g h t such cases f o u n d i n t h i s s t u d y . I t seems t h e n , t h a t the p a r e n t s of the m i l d l y r e t a r d e d c h i l d a r e l e s s a c c u r a t e i n t h e i r e s t i m a t i o n t h a n the p a r e n t s of the more s e v e r e l y r e t a r d e d c h i l d . Schulman and S t e r n found 8 cases where th e p a r e n t s ' e s t i m a t e c o r r e s p o n d e d e x a c t l y w i t h t h e t e s t r e s u l t ; no such c a s e s were found i n t h i s sample. P a r e n t s were r a t e d by the i n t e r v i e w e r a l o n g f o u r d i m e n s i o n s ( a d a p t e d f r o m a s t u d y by Fabrega and Haka, " P a r e n t s of M e n t a l l y H a n d i -capped C h i l d r e n " (9) (Appendix E ) . - k2 -TABLE XIX1.' I n t e r v i ewer ' s Rat ing of Parents Awareness Not aware of any degree of r e t a r d a t i o n in c h i l d (because of lack of i n s i g h t , d e n i a l , e t c . ) 8 Intermediate awareness, f e e l c h i l d is slow in some areas but not a l l , see slow areas as r e l a t e d to emotional or medical problems. 29 F u l l awareness of the degree of r e t a r d a t i o n in c h i l d , r e a l i s t i c about c h i l d ' s c a p a c i t i e s 2k Understand i nq Minima] or no understanding of the ;.meaning of r e t a r d a t i o n , f e e l c h i l d could l ea rn i f he t r i e d to or blame h i s slowness on some other cause, very u n r e a l i s t i c w i t h regard to c h i l d ' s f u t u r e 13 Intermediate understanding, unsure of c au sa t i on , unsure of f u t u r e , tend to f e e l the Spec ia l c l a s s w i l l b r i n g him up to the same l eve l as h i s age mates 30 Good understanding of the meaning of r e t a r d a t i o n and r e a l i s t i c about the c h i l d ' s f u t u r e 18 Emotions More emot i ona l l y balanced and ab le to conta in d i s t u rbed f e e l i n g s 20 Intermediate expres s ion of emotion 30 Depressed, g u i l t y or anxious 11 Acceptance of C h i l d Very a c c e p t i n g , s e n s i t i v e to c h i l d ' s needs, attempt to inc lude c h i l d who l l y in f am i l y c i r c l e and as one who can con t r i bu te to f am i l y 33 Intermediate acceptance, d i s p l a y or some ambivalent f e e l i n g s 2k R e j e c t i n g , occupied w i t h c h i l d ' s l i a b i l i t i e s , angry about c h i l d ' s handicaps, tendency to exclude c h i l d from f a m i l y c i r c l e and b e l i t t l e h i s c o n t r i b u t i o n s to the f am i l y k - 43 -These r a t i n g s were made a f t e r the i n te r v i ew was f i n i s h e d and c o n s t i t u t e a summary of the pa ren t s ' f e e l i n g s and understanding of t h e i r c h i l d and h i s handicap. Defensive behavior such as den ia l and p r o j e c t i o n was not uncommon among the parents , a l though on ly a small number were unable to see any s igns of slowness in t h e i r c h i l d ( f o r example, one parent of a boy who had an I.Q.. score of 84 wanted him to go on to U n i v e r s i t y and become a d o c t o r ) . A much l a r ge r number of parents were s imply unce r ta i n and asked such quest ions as " w i l l my daughter ever get m a r r i e d " , "When w i l l my boy be ab le to go back i n to the regu la r c l a s s " ^parents tended to ask numerous quest ions throughout the i n te r v i ew on many t op i c s both r e l a t e d and unre la ted to the Spec ia l c l a s s i t s e l f ) . In response to the quest ion "Of a l l your c on t ac t s , which d id you f i n d most h e l p f u l ? " , over h a l f of the parents s a i d that they could not answer the que s t i on ; f i v e s t a ted that none of t h e i r contact had been h e l p f u l , f i v e favored t h e i r medical c on tac t s , e leven favored the he lp they had rece ived from educat iona l personnel and seven spoke of e i t h e r a p u b l i c hea l th nurse or a p s y cho l o g i s t . Parents were a l s o asked who they would approach i f they were going to seek f u r t h e r he l p . The responses were as f o l l o w s : don ' t need any more he lp - 3, d o n ' t know who I would approach - 22, school personnel -24, f a m i l y doctor - 5, p s y c h i a t r i s t - 5, s o c i a l worker or p u b l i c hea l th nurse - 4 . The la rge number s t a t i n g that they d id not know where, they would go could be exp la ined by the f o l l o w i n g f ind ings. . About h a l f of the parents d id not express any rea l concern about t h e i r c h i l d ' s f u t u r e . The r e s t expressed rea l concern about the f u t u r e and had few plans or ideas - kk -of what t h e i r c h i l d might accompl i sh dur ing school and a f t e r g raduat ion, Parents of the o l de r c h i l d r e n (12 to 18 years ) were amongst the most concerned, worry ing mainly about t h e i r c h i l d ' s a b i l i t y and oppor tun i t y to ob ta i n employment a f t e r he l e f t s c hoo l . The s e l f - a d m i n i s t e r e d que s t i onna i re g ives more i n f o rmat i on , break ing down t h i s f e l t - n e e d i n t o the var ious areas of s e r v i c e . The f i r s t quest ion in t h i s form concerned the extent to which parents f e l t that t h e i r c h i l d s t i l l needed s pec i a l he l p . TABLE XX.l Need of C h i l d f o r Further Help to a great extent a l o t some a 1 i t t l e not a t a l 1 or not a p p l i c a b l e School 18 16 13 5 9 Med i c a l 7 6 10 9 29 Recreat ion serv i ces 8 10 16 k 23 Immed i a te f am i l y 13 10 8 1 5 25 Other r e l a t ives 6 9 7 39 Soc i a l s e r v i c e s k 1 9 6 41 - 45 -From t h i s t a b l e i t can be seen that most parents f e l t t h e i r c h i l d s t i l l needed s p e c i a l he lp in s c hoo l . Pa ren t s ' f e e l i n g s were not as homogeneous w i t h respect to the other a reas . Few parents had had contact w i t h a s o c i a l worker or p u b l i c hea l th nurse and tended to be unce r ta i n when answering t h i s que s t i on ; those who f e l t tha t some s o r t of s o c i a l s e r v i c e would be h e l p f u l tended to be t h i n k i n g about job p repara t i on and placement. More than h a l f of the parents f e l t that t h i s c h i l d requ i red more a t t e n t i o n from themselves than t h e i r other c h i l d r e n , but they saw t h i s as a problem f o r the nuc lear f a m i l y , not the extended f a m i l y . Many f a m i l i e s had even h e s i t a t e d to t e l l other r e l a t i v e s that the c h i l d was in a Spec ia l c l a s s . It should be noted here that the above comments are not der i ved s o l e l y from s c r u t i n i z i n g the completed que s t i onna i r e s ; w i th very few except i on s , parents t a l ked about the responses they were not ing down. The i n te rv iewer r e f r a i n e d from g i v i n g any d i r e c t i o n but conversed w i th the parents about t h e i r f e e l i n g s . In about f i v e cases the parent cou ld not read or w r i t e . The i n te r v i ewer then read the quest ion to them and noted t h e i r response. The second quest ion in t h i s ques t i onna i re asked parents to est imate to what extent they and t h e i r c h i l d had rece ived the he lp they f e l t had been needed over the yea r s . - 46 -TABLE XXI. Help Received by Parent and C h i l d over the Years Source to a great extent a l o t some a 1 i t t l e not at a l 1 not a p p l i c a b l e Spouse 23 15 11 6 6 Other ch i1dren 9 14 8 13 17 Aunts and uncjes 5 9 11 7 29 Grandparents J 4 9 11 5 32 Ne i ghbours 7 10 9 8 27 Recreat ion s e r v i c e s 3 6 6 9 37 Soc ia l s e r v i c e s 1 5 5 6 44 School 16 16 18 6 5 Medical s e r v i c e s 13 3 10 12 23 The r e c r e a t i o n and s o c i a l s e r v i c e ca tego r i e s represent , i t appears, the most n o t i c a b l e gap in a v a i l a b l e s e r v i c e s . The l a t t e r case seems to r e f l e c t an absence of s e r v i c e s , the former, a po s s i b l e i n a b i l i t y of the c h i l d r e n to e f f e c t i v e l y use the s e r v i c e . - hi -A f t e r the f i n d i n g s were surveyed a number of c r o s s - t a b u l a t i o n s were made to assess independence of var ious i tems. The r e s u l t s of these t abu l a t i o n s w i l l be presented here (Table in Appendix H). A high c o r r e l a t i o n was expected between the correspondence of the pa ren t s ' e s t imate of the c h i l d ' s I.Q,. to h i s a c tua l I.Q. and the i n t e r v i e w e r ' s r a t i n g of parents f o r awareness and understanding. 1 There was an a s s o c i a t i o n found between the est imated I.Q. and awareness (ch i square was i n v a l i d ) . Of those e i gh t parents rated as having no (or very l i t t l e ) awareness, three had not been ab le to es t imate the I.Q. and f i v e had est imated an I.Q,. which dev ia ted from the ac tua l by more than 10 p o i n t s . There was no apparent r e l a t i o n between the est imated I.Q. and understand ing. Second Stage of A n a l y s i s : The ques t ion of whether pa ren t s ' he lp - seek ing attempts were a s soc i a ted w i t h the c h i l d ' s c h a r a c t e r i s t i c s or p a r en t ' s c h a r a c t e r i s t i c s or both was not answered by the preceding f i n d i n g s . The f o l l o w i n g hypotheses were designed to assess the r e l a t i v e i n f l uence of the two. Because of the lack of in fo rmat ion about the problems p r e c i p i t a t i n g the pa ren t s ' s e l f - i n i t i a t e d c o n t a c t s , an antecedent c o n d i t i o n was s e l e c ted f o r t e s t i n g : awareness of parents of the ex i s t ence of a problem. Parents were almost equa l l y d i v i ded between those who became aware of some problem before the c h i l d was 2^  years o l d and those who became aware a f t e r the c h i l d was 2-j. In an attempt to see i f there was any a s s o c i a t i o n between se r v i ce s rece i ved and parenta l adjustment ( r e l i e f of d i s t r e s s ) , the antecedent c o n d i t i o n of awareness was aga in s e l e c t e d . - 48 -Hypothesis l a : The lower the I.Q.. of the c h i l d , the e a r l i e r parents w i l l f i r s t no t i ce some problem. This hypothes is was not supported. Ea r l y r e c o g n i t i o n appears to be a s soc i a ted wi th a higher I .Q_. TABLE XXI I l y i I.Q.. of C h i l d and Age of C h i l d when Problem was Recognized 0 to 79 80 to 100 t o t a l Problem recognized before age 2-j 18 11 29 Problem recognized a f t e r age 2^ 26 6 32 44 17 Of those c h i l d r e n whose I.Q.. was le s s than 79, a g reater p ropor t i on d i d not cause t h e i r parents any concern u n t i l a f t e r age 2-^ . Of those whose I.Q.. was over 80, a g reater p ropor t i on were d i scovered e a r l y . Hypothesis l b : The r e t a r d a t i o n of the c h i l d having medical problems w i l l be perce ived e a r l i e r by parents than the r e t a r d a t i o n of c h i l d r e n wi thout medical problems. This hypothes is was supported. - 49 -TABLE XXIV. Medical Problems and Age of Recogn i t ion having medical probl ems. no medical problems t o t a l Recogn i t ion before age 2^- 10 19 29 Recogn i t ion a f t e r age 2^ 4 28 32 14 k7 Of those four teen having medical problems a g reater p ropo r t i on caused t h e i r parents some concern before age 2-j. Hypothesis Ic: Reta rdat ion of boys w i l l be perce ived e a r l i e r than r e t a r d a t i o n of g i r l s . There was no support f o r t h i s hypothes i s . Hypothesis Id: High educat ion of f a t he r w i l l be a s soc i a ted w i t h e a r l y r e c o g n i t i o n of r e t a r d a t i o n . This hypothes is was supported. TABLE XXV. Education of Father and Age of C h i l d when Problem was Recognized  Less than grade 10 • grade 10 or higher Before 2-j y r s . 12 18 A f t e r 2^ y r s . 16 15 - 50 -Hypothes is I la: The earlier the recognition of retardation, the greater is the chance that parents were satisfied with the i n i t i a l help received from a professional person. There was no support found for this hypothesis. Hypothes is l i b : The earlier the recognition of retardation, the greater is the chance that parents perceived their child's problems in the regular class as academic (rather than emotional). No support was found for this hypothesis. Hypothes is l i e : The earlier the recognition of retardation the less likely the parents would be to find contacts with the regular class teacher to be impeding. Hypothesis not supported. These parents (who recognized their child's problem early) tended to find the contacts either very supportive or impeding. A greater number of those parents recognizing the problem after age 2^ found the contacts to be neutral. (Table XXVI in Appendix H). Hypothes is I Idij The earlier the recognition of retardation, the more often parents reported that they initiated the child's transfer into the Special class. The results here are inconclusive although there appears to be a slight trend supporting the hypothesis. (Table XXVII in Appendix H). - 51 -Hypothes is M e : The e a r l i e r the r e c o g n i t i o n of r e t a r d a t i o n , the younger the c h i l d was when he entered the Spec ia l c l a s s . The hypothes is was supported. TABLE XXVII I. Age at Recogn i t ion and Age when En te r i ng the Spec ia l C lass  le s s than 7 years over 7 years Recogn i t ion before 2^ y r s . 14 15 Recogn i t ion a f t e r 2-^  y r s . 11 21 - 52 -Chapter 5  Summary and Conclus ions Nature of the Problems and Help Sought: The f i n d i n g s i nd i ca ted that the problems of the c h i l d r e n as perceived by the parents change in degree and k ind as the c h i l d passes through the var ious ch i ldhood s tages . This ob se rva t i on was c on s i s t en t w i t h the t h e o r e t i c a l f o rmu l a t i on that was presented e a r l i e r in t h i s paper. The problems that were recognized by parents were c l e a r l y r e l a t e d to some expecta t i ons that r e f l e c t the norms of performance and behavior in our s o c i e t y . The dichotomy of performance and/or behavior proved to be a usefu l one f o r t h i s study as a l l parents d i f f e r e n t i a t e d between the two, speaking of e i t h e r one or the o the r . During in fancy the problems perce ived were predominantly medical in nature . During the todd le r and pre-school stages s o c i e t a l expec ta -t i on s regard ing performance become c l e a r e r ; the problems perce ived by the parents in t h i s study r e f l e c t these e x p e c t a t i o n s . There was a gradual increase in the frequency of behavior problems r e l a t i n g mainly to over-dependency, poor peer r e l a t i o n s and h y p e r a c t i v i t y . Pa rent s ' percept ions of h y p e r a c t i v i t y and r e l a t e d symptoms (b ra in damage syndrome) is le s s c l e a r l y r e l a t e d to parenta l expecta t ions of age-app rop r i a te behav io r . These symptoms may be perce ived (or f e l t ) at any stage of the c h i l d ' s development beginning as e a r l y as i n f ancy . Suspected b ra i n damaged c h i l d r e n appear to have more c h a r a c t e r i s t i c s in common w i th other b r a i n damaged c h i l d r e n of higher i n t e l1 i g ence than w i th the m i l d l y retarded c h i l d . The c a t c h - a l l nature of the m i ld r e t a r d a t i o n - 53 -c l a s s i f i c a t i o n makes i t d i f f i c u l t to study the group w i t h i n a standard t h e o r e t i c a l f o r m u l a t i o n . A c o r o l l a r y to t h i s statement is the d i f f i c u l t y of s t a nda rd i z i n g a treatment or help-g'rving approach to the group. During the c h i l d ' s ado lescent stage the pa ren t s ' concerns tended to focus on occupat ion or job p o s s i b i l i t i e s . The c h i l d ' s performance in school begins to take on a new meaning (and becomes more c l e a r l y r e l a t e d to h i s f u t u r e a d u l t r o l e ) . The f i n d i n g s i nd i ca ted a l s o that the help sought by parents changed as the c h i l d passed through the stages of ch i ldhood and ado lescence. Whether t h i s was r e l a t e d to the changing nature of the c h i l d ' s problems or changes in the v a r i e t y and a v a i l a b i l i t y of s e r v i ce s has not been c l e a r l y answered by the f i nd i n g s as the l a t t e r aspect was not inc luded in the focus of t h i s s tudy. There was some evidence that both a f f e c t e d the type of he lp sought by parent s . Age of C h i l d at time of Pa ren t s ' Recogn i t ion of h i s R e t a r d a t i o n : The age of the c h i l d a t the time of the pa rent s ' i n i t i a l awareness of some problem was not c on s i s t en t f o r the whole sample. The ages ranged from s h o r t l y a f t e r b i r t h to e leven yea r s . Awareness, i t was proposed by t h i s s tudy, would be an antecedant c o n d i t i o n to he lp - seek ing by parent s . The f i n d i n g s of Schulman and Stern ( 17) that some awareness was present in the parents of the seve re l y retarded c h i l d before t h e i r i n i t i a l c o u n s e l l i n g ses s ion w i th a p ro fe s s i ona l supports t h i s p r o p o s i t i o n . The f i n d i n g s i nd i ca ted that a number of f a c t o r s were a s soc i a ted w i th the age at which the c h i l d ' s problems would f i r s t be perce ived by the parent s . The r e t r o s p e c t i v e nature of the data c o l l e c t i o n throws s u sp i c i on on the f i n d i n g that e a r l y awareness was a s s oc i a ted w i th a higher I.Q,. of the - 5h -c h i l d as measured in May, 1967- A lower I.Q,. of the c h i l d might a c t u a l l y be a s soc i a ted w i th a re luc tance of parents to r e f l e c t back on, or r e c a l l e a r l y concern and disappointments concerning the deve lop-ment of the c h i l d . Medical problems of the c h i l d in infancy was a s soc i a ted w i t h e a r l y awareness, as we l l as higher educat ion (over grade of the f a t h e r . Ea r l y awareness was a l s o a s soc ia ted w i th the r e c e i v i n g of medical he lp in infancy (whether the parents approached the doctor or the doctor approached the parents was not e s t a b l i s h e d but one would suspect the l a t t e r case would be t r u e ) . The f a c t o r s i n f l u e n c i n g the age of the c h i l d a t which the parents w i l l seek or r ece i ve p ro fe s s i ona l s e r v i c e s , then, are m u l t i p l e and not j u s t r e s t r i c t e d to the performance and/or behavior of the c h i l d . C h i l d ' s T rans fer i n to the Spec ia l C l a s s : The c h i l d ' s t r a n s f e r i n to a Spec ia l c l a s s from the regu la r c l a s s one would assume would be p r e c i p i t a t e d by the percept ions of school personnel (notab ly the regu la r c l a s s teacher) that the c h i l d was not ab le to cope w i t h the regu la r c l a s s . For some parents t h i s marked the i n i t i a l r e c o g n i t i o n that t h e i r c h i l d was having d i f f i c u l t i e s . F ind ings i nd i ca ted that the e a r l i e r the pa ren t s ' r e c o g n i t i o n of t h e i r c h i l d ' s l i m i t a t i o n s , the younger he is when hewas t r a n s f e r r e d to the Spec ia l c l a s s . A po s s i b l e exp l ana t i on is the s l i g h t l y l a r ge r number of parents in t h i s group who s a i d that they i n i t i a t e d the move to t r a n s f e r the c h i l d to a Spec ia l c l a s s . Here aga i n , is evidence that the p ro fe s s i ona l he lp rece i ved by the c h i l d is i n f l uenced by f a c t o r s other than h i s performance 'and/or behavior as we l l as by these l a t t e r f a c t o r s . - 55 -The f i n d i n g s i nd i ca ted that parents have numerous contacts w i th p r o f e s s i ona l s other than teachers when the c h i l d was of school age. As most parents i nd i ca ted s a t i s f a c t i o n wiiith the educat iona l help t h e i r c h i l d had r e c e i v e d , one would not suspect the c h i l d ' s performance had p r e c i p i t a t e d these other c on t a c t s . Behavior problems of the c h i l d in the home and community were i nd i ca ted by over ha l f of the parents , p r o v i d i n g an exp l ana t i on f o r these other c on t a c t s . The s e r v i c e s sought by these parents inc luded a v a r i e t y of p r o f e s s i on s . None of the parents mentioned a school c o u n s e l l o r , few mentioned a s o c i a l worker. P u b l i c hea l th nurses, p sycho log i s t s and p s y c h i a t r i s t s accounted f o r the g rea te s t number of these other c o n t a c t s . Parent Awareness and Understanding of the C h i l d ' s R e t a r d a t i o n : There was a l a rge number of parents (over h a l f ) whom the i n te rv iewer rated as s t i l l not f u l l y aware of t h e i r c h i l d ' s c o g n i t i v e l i m i t a t i o n s . This f i n d i n g was supported by the pa ren t s ' est imates of t h e i r c h i l d ' s I.Q..; a l a rge number of them dev ia ted s u b s t a n t i a l l y from the c h i l d ' s ac tua l I.Q.. The age of the c h i l d when the parents f i r s t no t i ced something was not found to be r e l a t e d to subsequent awareness so that some f a c t o r other than time must be re spons i b l e f o r the pa ren t s ' awareness and acceptance. The patterns of he lp - seek ing of parents v a r i ed too much to be ab le to a s s o c i a t e one or more patterns w i t h success ( i . e . f u l l awareness and unders tand ing) . It was not w i t h i n the scope of t h i s study to focus on the ac tua l s e r v i c e s themselves. The f i n d i n g s i n d i c a t e , however, that the performance and/or behav iora l c h a r a c t e r i s t i c s of the c h i l d which p r e c i p i t a t e he lp - seek ing by parents are not always - 56 -r e a l i s t i c a l l y perce ived by the parent s . Parents o f ten seek the wrong answer;; they look f o r someone to t e l l them that t h e i r su sp i c i ons are i l l - f o u n d e d . The s t rength of t h e i r f e e l i n g s about va r ious p r o f e s s i ona l s o f ten r e f l e c t s t h e i r f e e l i n g s of g u i l t , confus ion and anx i e t y regard ing the c h i l d . The Sample The sample s e l e c t ed f o r study lends some weight to the f i n d i n g s ; the parent s , in terms of occupat ions and educa t i on , represent persons from a l l walks of l i f e . The problems concerning the m i l d l y retarded c h i l d are not conf ined to one socio-economic group. He lp - seek ing , however, does seem to be a f f e c t e d by the f a t h e r ' s educat ion (h igher educat ion was a s s oc i a t ed w i t h a greater frequency of he lp - seek ing as we l l as e a r l i e r r e c o g n i t i o n of the c h i l d ' s r e t a r d a t i o n ) . To study a group of m i l d l y retarded c h i l d r e n and t h e i r parents from the po int of view of a s e r v i c e ( to s e l e c t one ' s sample from the f i l e s of a s pec i a l s e r v i c e agency) would then run the r i s k of s tudy ing a b iased sample which would over -represent the more h i gh l y educated segment of the popu l a t i on . The quest ion s t i l l remains: are the c h i l d in t h i s group t y p i c a l of the c h i l d r e n and t h e i r parents in the whole Spec ia l c l a s s popu la t ion and are the Spec ia l c l a s s c h i l d r e n and t h e i r parents t y p i c a l of the whole popu la t ion of m i l d l y retarded c h i l d r e n . This quest ion cannot be answered but one would suspect that i f there are d i f f e r e n c e s in the problems f e l t by the whole popu la t ion of parents of the m i l d l y retarded c h i l d r e n and in the problems f e l t by t h i s sample of parents , that these d i f f e r e n c e s would be on ly in degree, not k i n d . - 57 -In summary, t h i s study was not intended to prov ide any answers f o r the var ious p ro fe s s i ona l d i s c i p l i n e s invo lved in g i v i n g s e r v i ce s to the m i l d l y retarded c h i l d or h i s parent s . A d e s c r i p t i o n has been given of the c h i l d r e n in the Spec ia l c l a s se s f o r s low learner s and of t h e i r parent s . This d e s c r i p t i o n has i l l u s t r a t e d that the problems perce ived by the parents of these c h i l d r e n are not conf ined to developmental lags or l e a r n i n g d i f f i c u l t i e s but inc lude behavior problems in the home and community. Any s e r v i c e s that are designed to meet the needs of t h i s group then, must take these l a t t e r problems i n to account. One should make a f u r t h e r d i s t i n c t i o n between the needs of the c h i l d and of h i s parent s . Spec ia l s e r v i ce s which are rendered to the c h i l d by a p ro fe s s i ona l group are o f ten misunderstood by the parent s . They may not understand the nature of t h e i r c h i l d ' s l i m i t a t i o n or may have not accepted t h e i r c h i l d ' s l i m i t a t i o n s even though they might be aware of something " d i f f e r e n t " about t h e i r c h i l d . BIBLIOGRAPHY 1. A p p e l l , M.F. and W i l l i a m s , C.M. and F i s h e l l , K.N. "Changes i n A t t i t u d e s o f P a r e n t s of R e t a r d e d C h i l d r e n E f f e c t e d t h r o u g h Group Counsel 1 i n g " , A m e r i c a n J o u r n a l o f Mental D e f i c i e n c y , 1964, V o l . 68, No.6. 2. B a r c l a y , G o u l e t , H o l t g r e i v e and Sharp, " P a r e n t a l E v a l u a t i o n s o f C l i n i c a l S e r v i c e s f o r R e t a r d e d C h i l d r e n " . A m e r i c a n  J o u r n a l of Mental D e f i c i e n c y , 1962, Vol.67. 3. Begab, M i c h a e l , J . "Unmet Needs of the M e n t a l l y R e t a r d e d i n the Community", A m e r i c a n J o u r n a l o f Mental D e f i c i e n c y , 1958-62, No.4. 4. Begab, M i c h a e l , J . The M e n t a l l y R e t a r d e d C h i l d , A Guide t o S e r v i c e s of S o c i a l A g e n c i e s , U.S..Department of Heal th,.. E d u c a t i o n and W e l f a r e , C h i l d r e n ' s Bureau P u b l i c a t i o n , 1963, No. 404. 5. C a l d w e l l , Manley and S e e l y e , " F a c t o r s A s s o c i a t e d w i t h P a r e n t a l R e a c t i o n s t o a C l i n i c f o r R e t a r d e d C h i l d r e n " . A m e r i c a n  J o u r n a l o f Mental D e f i c i e n c y , 1961. 6. C a l d w e l l , Manley and N i s s a n , . " R e a c t i o n s o f Community A g e n c i e s and P a r e n t s t o S e r v i c e s P r o v i d e d i n a C I i n i c f o r R e t a r d e d C h i l d r e n " , A m erican J o u r n a l o f Mental D e f i c i e n c y , 1961. 7. C o u g h l i n , E l l e n W.,, "Some P a r e n t a l A t t i t u d e s Toward Handicapped C h i l d r e n " , The C h i l d , 6:2:1942. 8. E h l e r s , W.H., Mothers of R e t a r d e d C h i l d r e n , How They F e e l , Where th e y f i n d H e l p , C h a r l e s C. Thomas, p u b l i s h e r , S p r i n g f i e l d , 1 1 1 i n o i s , 1966. 9. F a b r e g a , H. and Haka, K.K. " P a r e n t s o f M e n t a l l y Handicapped C h i l d r e n " , A r c h i v e s o f General P s y c h i a t r y , 1967, V o l . 1 6 . 10. G r a l i k e r , B.V., Parmelee,. A.H.. and Koch, R. " A t t i t u d e Study o f P a r e n t s of M e n t a l l y R e t a r d e d C h i l d r e n " , J o u r n a l o f  P e d i a t r i c s , 1959, V o l . 54. 11. G r e b l e r , • Anna M a r i e , . " P a r e n t a l A t t i t u d e s towards M e n t a l l y R e t a r d e d C h i l d r e n " , A m e r i c a n J o u r n a l o f Mental D e f i c i e n c y , 1951, V o l . 56. 12. Kahn, A . J . "The Design o f R e s e a r c h " , S o c i a l Work R e s e a r c h , E d i t o r , P o l a n s k y , N.A., U n i v e r s i t y o f C h i c a g o P r e s s , I 9 6 0 , C h a p t e r 3, pp. 48-74. 13. M u r r a y , Mrs. Max A. "Needs o f P a r e n t s o f M e n t a l l y R e t a r d e d Chi 1 dren",•• A m e r i c a n J o u r n a l o f Mental D e f i c i e n c y , 1959, V o l . 63, No. 6. 14. P a r a d , H.J. and C a p l a n , G. "A Framework f o r S t u d y i n g F a m i l i e s i n C r i s i s " . S o c i a l Work, I960, J u l y , No. 3. 15. R i p p l e , L i l l i a n . M o t i v a t i o n . C a p a c i t y and O p p o r t u n i t y . C h i c a g o , U n i v e r s i t y o f C h i c a g o P r e s s , 1964. 16. S c h o n e l l , F . J . and W a t t s , B.H. "A F i r s t S u r vey of t h e E f f e c t s of a Subnormal C h i l d on the F a m i l y U n i t " , A m e r i c a n  J o u r n a l of Mental D e f i c i e n c y , 1956, V o l . 61. 17. Schulman, J.L . and S t e r n , S. " P a r e n t s ' E s t i m a t e of t h e I n t e l l i g e n c e of R e t a r d e d Ch?1dren".•American J o u r n a l o f  Mental D e f i c i e n c y . 1 9 5 9 . 18. . S t o n e , M.M. " P a r e n t a l A t t i t u d e s t o R e t a r d a t i o n " , Amer i c a n J o u r n a l of Mental D e f i c i e n c y . 1948, V o l . . L I U , No. 2. 19. T i z a r d , J . and Grad, J.C. "The M e n t a l l y Handicapped and T h e i r F a m i 1 i e s " O x f o r d U n i v e r s i t y P r e s s , I n s t i t u t e of P s y c h i a t r y , M audsley Monographs, 1 9 6 1 , No. 7-20. T i z a r d , J . Community S e r v i c e s f o r the M e n t a l l y R e t a r d e d , U n i v e r s i t y P r e s s , London, 1964. 21. Waskowitz,. C h a r l o t t e H. "The P a r e n t s o f R e t a r d e d C h i l d r e n Speak f o r Themselves", J o u r n a l o f P e d i a t r i c s . 1959, V o l . 54. 22. W o r t i s , J o s e p h . "Toward the E s t a b l i s h m e n t of S p e c i a l C l i n i c s f o r R e t a r d e d C h i l d r e n " E x p e r i e n c e and S u g g e s t i o n s " , A m e r i c a n J o u r n a l of Mental D e f i c i e n c y , 1954-58, No. 3. 23. Z w e r l i n g , I s r a e l . " I n i t i a l C o u n s e l l i n g o f P a r e n t s w i t h M e n t a l l y R e t a r d e d C h i l d r e n " , J o u r n a l of P e d i a t r i c s , 1954, V o l . 44, No. 4. 24. I n f o r m a l c o n v e r s a t i o n s w i t h Dr. Hamish N i c h o l , A s s o c i a t e P r o f e s s o r , Department of P s y c h i a t r y , Head, S e c t i o n of C h i l d P s y c h i a t r y , F a c u l t y of M e d i c i n e , U n i v e r s i t y o f B r i t i s h C o l u m b i a . APPENDIX A The Interviews Most of the in terv iews were conducted in the homes of the parent s . Two parents chose to be interv iewed in the o f f i c e . The impress ion of the i n te rv iewer was that most of the parents f e l t qu i t e re l axed in t h e i r own home and that an o f f i c e i n te r v i ew might have increased t h e i r a n x i e t y . When p o s s i b l e , the f a the r s and mothers were interv iewed s epa r a te l y ; the mothers in the a f ternoon and the f a the r s in the even ing. A number of the mothers sat in on t h e i r husband 't i n t e r v i ew, as i f a f r a i d that he might g ive a d i f f e r e n t s t o r y or impression to the i n te rv iewer . In such cases , the mother was ignored by the i n te rv iewer as much as was po s s i b l e and a t t e n t i o n was given to e s t a b l i s h i n g rapport w i t h the f a t h e r . About ten of the parents i n s i s t e d that they be interv iewed together . In such cases the i n te rv iewer asked each quest ion of the mother f i r s t , then asked the f a t he r i f he had anyth ing f u r t h e r to add. This method d i d not seem to i n h i b i t the responses of the f a t he r s w i th the except ion of one or two cases . There were, f o r most of the ten parents , po ints of disagreement and on one occa s i on , major disagreement (the mother vehemently denied any r e t a r d a t i o n in her son, the f a t h e r was very r e a l i s t i c ) . The j o i n t i n te r v i ew was more d i f f i c u l t f o r the i n t e r -viewer and was avoided i f p o s s i b l e . Parents tended to ask many quest ions regard ing t h e i r c h i l d and var ious s e r v i c e s . The in te rv iewer .a sked the parents to save t h e i r quest ions f o r the end of the i n te rv i ew unless answering the quest ions seemed important to the pa ren t ' s co -opera t ion in the i n t e r v i ew . A general d i s cu s s i on f o l l owed the i n te rv iew in most cases. The parents o f t en seemed r e l u c t a n t to see the i n te rv iewer go and on a number of occas ions asked whether the i n te rv iewer would r e t u r n . As te rm ina t i on was considered an important phase of the research i n t e r v i ew, the i n te rv iewer d i d not knowingly leave any of the parents in an anxious or upset s t a t e . APPENDIX B Le t t e r e x p l a i n i n g the p r o j e c t : sent out to a l l of the parents of c h i l d r e n in a Spec ia l c l a s s f o r slow l e a r n e r s . Dear Mr. and Mrs. Re: Survey of Ch i l d ren in Spec ia l C lasses I am w r i t i n g to t e l l you of a research p r o j e c t designed w i t h i n the F a cu l t y of Med ic ine , U n i v e r s i t y of B.C., that has been approved by the Department of Research and Spec ia l Serv ices of the Vancouver School Board. The purposes of the survey a re : 1. To cons ider the d i f f i c u l t i e s encountered by parents in g e t t i n g needed help f o r t h e i r c h i l d r e n e n r o l l e d in Spec ia l C l a s se s . 2. To determine the pa t te rn of s e r v i ce s a v a i l a b l e in the community, and 3. To suggest po s s i b l e improvements in community s e r v i ce s f o r c h i l d r e n who r equ i r e s p e c i a l c l a s s educa t i on . The plan is to s e l e c t from these c l a s se s a small group of c h i l d r e n whose parents agree to take part in the p r o j e c t . Then a research worker would c a l l a t each home s e l e c ted and i n te r v i ew the parents . The c h i l d r e n would not be i n te rv iewed. Please cons ider i f you would be w i l l i n g to p a r t i c i p a t e , mark the app rop r i a te square below, and r e t u rn your response in the envelope prov ided. There are about 1,300 p up i l s in Spec ia l C lasses but the worker w i l l have time to v i s i t on ly 50 homes. You w i l l be adv ised i f yours is one of them. Yours s i n c e r e l y , P r i n c i p a l of School Response I would be w i l l i n g to p a r t i c i p a t e , i f s e l e c t ed I would p re fe r not to p a r t i c i p a t e (P lease check the app rop r i a te square) APPENDIX C Interv iew Guide SURVEY OF PARENTS OF CHILDREN  IN SPECIAL CLASSES IN VANCOUVER CITY. 1966-1967 INTERVIEW GUIDE \ 'Seatlagr. •", o f C h i l d P s y c h i a t r y  F a c u l t y o f M e d i c i n e  U n i v e r s i t y o f B r i t i s h Columbia 1. NAME: Parent Interv iewed: Mother Father 1 2 • 2. STUDY NUMBER: SAMPLE GROUP: - ' in terv iewed sample No Interv iew -responded w i th "no consent " No i n t e r v i e w , no response • k. ADDRESS: Area census t r a c t number 5. BIRTHDATE: (What was the date of your c h i l d ' s b i r t h ) Day Mth. Yr. 6. SEX: Male Fema1e 1 2 7. ETHNIC GROUP OF PARENTS: (Where were you s n d you r husband b o r n ? ) Born i n Canada 1 B r i t i s h I s l e s 2 F r e n c h 3 German k I t a l i a n 5 N e t h e r l a n d 6 P o l i s h 7 R u s s i a n 8 S c a n d i n a v i a n 9 U k r a n i a n A Oth e r European B A s i a t i c C Oth e r ( s p e c i f y ) 0 8. SPECIAL CLASS: unknown 0 j u n i o r 1 i n t e r m e d i a t e 2 s e n i o r 3 s e c o n d a r y k 9. NUMBER OF YEARS IN SPECIAL CLASS: (How many y e a r s has been i n t h e s p e c i a l c l a s s ? ) 1, 2, 3, k, 5, 6, 7, 8 10. AGE AT TIME OF ENTRY INTO SPECIAL CLASS: (How o l d was when he f i r s t s t a r t e d a s p e c i a l c l a s s ? ) unknown 0 f i v e 1 s i x 2 seven 3 e i g h t k n i n e 5 t e n 6 e l e v e n 7 twe 1 ve 8 t h i r t e e n 9 f o u r t e e n A f i f t e e n B s i x t e e n C s e v e n t e e n 0 11. LAST REGULAR CLASS ATTENDED: '. (Was y o u r c h i l d i n a r e g u l a r c l a s s b e f o r e ? ) What was t h e l a s t grade he a t t e n d e d ? ) unknown 0 one 1 two 2 t h r e e 3 f o u r h f i ve 5 s i x 6 seven 7 e i g h t o r h i g h e r 8 not p r e v i o u s l y i n 9 r e g u l a r c l a s s k i n d e r g a r d e n A o t h e r ( s p e c i f y ) B p 12. IF TRANSFERRED FROM REGULAR CLASS HIS PROBLEMS PERTAINED TO: (How was doing w i th h i s school work? What was h i s behaviour l i k e in the regu la r c l a s s ? ) unknown 0 academic d i f f i c u l t i e s 1 emotional and behav ioura l problems 2 academic and emotional 3 dont 1 know 4 not a p p l i c a b l e 5 other ( s p e c i f y ) 6 13. PERCEPTION OF PROBLEM: a) Did you th i nk t h i s was very s e r i o u s : minor, no problem 1 m i l d s e v e r i t y 2 major s e v e r i t y 3 b) Did you th ink t h i s was something that you and your farn i iy could handle? yes 1 unce r t a i n 2 no 3 14. PARENTS CONTACTS WITH PREVIOUS REGULAR CLASS TEACHER: i j (How o f t en d i d you see the teacher in the regu la r c l a s s ? ) | | unknown 0 not a p p l i c a b l e 1 once 2 tw ice 3 3-4 v i s i t s 4 more than 4 5 none 6 15. PARENTS REACTION TO CONTACTS: | 1 (Did you f e e l the teacher was h e l p f u l , or not?) ( j suppor t i ve 1 neut ra l 2 impeding 3 COMMENTS: P D 16. PRESENT SCHOOL PERFORMANCE (IN PARENTS' ESTIMATE)1:' a) Academic Work: ( How is your c h i l d doing now w i t h h i s school work?) i — r good 1 J I average 2 poor 3 don ' t know 4 b) Re l a t i on s w i th peers: (How does he get a long w i th the other c h i l d r e n in h i s c l a s s ? ) good 1 | 1 average 2 | I poor 3 d o n ' t know 4 16. PRESENT SCHOOL PERFORMANCE (INPARENTS ESTIMATE): Cont ' d ) c ) R e l a t i o n w i t h teacher : (How does he get a long w i t h the teacher? ) j I good 1 • • average 2 poor 3 don ' t know k 17. PARENT'S KNOWLEDGE OF CHILD'S PRESENT SCHOOL PERFORMANCE GAINED FROM: (How have you come to know what he does in schoo l ? ) unknown 0 ch i 1 d 1 teacher 2 c o u n s e l l o r or p r i n c i p a l 3 c h i l d + other ( s p e c i f y ) 4 o ther ( s p e c i f y ) 5 18. CHILD'S ADJUSTMENT TO SPECIAL CLASS: (How do you th i nk your c h i l d f e e l s about the s p e c i a l c l a s s ? ) I ikes c l a s s 1 average 2 d i s l i k e s c l a s s 3 COMMENTS: • 19 . PARENT'S FEELINGS ABOUT SPECIAL CLASS: (How do you f e e l about the s pec i a l c l a s s ? ) very good f o r c h i l d 1 1 1 average 2 • harmful 3 u n c e r t a i n k COMBE NTS: _ _ _ _ _ 2 0 . ARE MOTHER AND FATHER IN AGREEMENT OVER PLACEMENT OF CHILD IN SPECIAL CLASS: (Does your husband/wife f e e l the same way you do about the j f s pec i a l c l a s s ) * — unknown 0 yes 1 unce r ta i n 2 no 3 COMMENTS: 21. WHO INITIATED THE MOVE TOWARDS SPECIAL CLASS PLACEMENT: (Whose idea was i t to put . .. in a s pec i a l c l a s s ? ) unknown 0 ' parent 1 school personnel 2 phy s i c i an 3 other ( s pec i f y ) k 22. WHO FIRST SPOKE TO THE PARENTS ABOUT SPECIAL CLASS PLACEMENT: (Who was the f i r s t person you spoke to about the s pec i a l c l a s s ? ) j j unknown 0 regu la r c l a s s teacher 1 coun se l l o r or p r i n c i p a l 2 school board d i r e c t o r of s p e c i a l 3 c l a s se s P s y c h i a t r i s t (M.H.C.) k Phys i c i an 5 other ( s p e c i f y ) 6 • 23. AGE OF CHILD AT THAT TIME: (How o l d was at that time?) f i ve 1 s i x 2 seven 3 e i gh t k n i ne 5 ten 6 eleven 7 twe 1 ve 8 t h i r t e e n 9 four teen A f i f t e e n Q s i x t e e n C seventeen D 2h. PARENTS' REACTION TO THIS CONSULTATION: (Did you f i n d t h i s conver sa t i on h e l p f u l , or not? ) j j suppor t i ve 1 neutra l 2 impeding 3 COMMENTS: 25. WAS ANYONE ELSE CONSULTED BY PARENTS: (Who e l s e d id you t a l k to about the s pec i a l c l a s s ? ) j | no one e l s e 1 school teacher or p r i n c i p a l 2 coun se l l o r 3 d i r e c t o r of s p e c i a l c l a s se s k phy s i c i an 5 p s y c h i a t r i s t 6 more than 1 of above ( s pec i f y ) 1 other ( s pec i f y ) 8 26. PARENTS' REACTION TO THIS SECOND CONSULTATION: f  (Was t h i s h e l p f u l , or not?) suppor t i ve 1 ' ' neut ra l 2 impeding 3 27. PARENT'S REASON FOR THE SECOND OR SUBSEQUENT CONSULTATIONS: (Why d i d you have more than one conver sa t ion about the s pec i a l c l a s s ? ) I ' a t other person ' s requests 1 wanted more in format ion 2 unsure of why c h i l d was being 3 pi aced COMMENTS: 28. SPECIFY AND RATE (SUPPORTIVE, NEUTRAL OR IMPEDING) EACH CONSULTATION: (Could you g ive me the names of a l l the persons you contacted?) F i r s t : 1 2 3 N/A Second: 1 2 3 N/A T h i r d : 1 2 3 N/A 29. HOW MIGHT THE CONSULTATIONS HAVE BEEN MORE HELPFUL? • • • 30. REASON FOR PLACEMENT IN SPECIAL CLASS IF CHILD WAS NOT PREVIOUSLY IN REGULAR CLASS: j 1 (Why was placed in the s pec i a l c l a s s ? ) j | don ' t know 0 slow lea rner 1 behaviour problems 2 academic behaviour 3 other ( s pec i f y ) k N/A 5 31. CONTACTS WITH SCHOOL PERSONNEL SINCE SPECIAL CLASS PLACEMENT: a) Frequency: (how o f t en have you met?) once 1 twice 2 three to four times 3 more than k k not at a l I 5 • b) Frequency s a t i s f a c t i o n : (would you l i k e to see them more or les s o f t en or I I is it inst ahnnt i-inht?^ ' » i s i t j u s t about r i g h t ? ) would 1i ke more 1 j u s t r i g h t 2 too o f t en 3 c) P a ren t ' s r eac t i on s to meetings: (Are they h e l p f u l ? ) I | suppor t i ve 1 neut ra l 2 impeding 3 COMMENTS: 32. CHILD'S BEHAVIOUR IN HOME: (How i s your c h i l d behaving a t home?') J s i b l i n g r i v a l r y 1 * aggress ion 2 d e l i nquency 3 sexual problems k dependency 5 d i s c i p l i n e problems 6 withdrawal 7 communication problems 8' m u l t i p l e p rob lems( spec i fy ) 9 other ( s p e c i f y ) none of above A B 33. CHILD'S BEHAVIOUR: (What in p a r t i c u l a r made i t more d i f f i c u l t to handle ?) Age Problem Sever i ty Copi ng 1 nfancy Toddler Preschool • School Teenage 3k. CHILD'S BEHAVIOUR a) How i s IN COMMUNITY g e t t i n g a long ou t i n the neighbourhood? 1 2 3 aggress ion d e l i nquency wi thdrawal sexual problems k communication problems 5 m u l t i p l e problems ( s pec i f y ) 6 • other ( s pec i f y ) none of above 7 3 b) Is t h i s behaviour something you and your f a m i l y can cope wi th ? yes 1 unce r t a i n no 2 3 • f 35. OTHER CONTACTS OF CHILD (IN SCHOOL YEAR 66-67) (Besides the people you have seen at the school t h i s year , have you or seen t h i s year and what a c t i v i t i e s c h i l d p a r t i c i p a t e d in?) who has e l se your Contact med. school om.Soc. om.Rec, Reason .support ive Sat i s f act i o n < 5 ' e u t _ f ' >mpeding 1 . 2. 3. 3. 4. 5. 6. ( I ' v e asked you many quest ions about your c h i l d , now I 'd l i k e to ask you a few quest ions about y ou r s e l f and your f a m i l y ) 36. AGE OF: (Your age i s ? Your husband ' s/w i fe ' s age i s ? ) FATHER MOTHER unknown 0 0 l e s s than 15 years 1 1 15-19 years 2 2 20-24 years 3 3 25-29 years 4 4 30-34 years 5 5 35-39 years 6 6 40-44 years 7 7 45-49 years 8 8 50 or more years 9 9 37. AGE AT TIME OF CHILD'S BIRTH: (Your age when was born? Your husband's?) RATHER MOTHER unknown 0 0 l e s s than 15 years 1 1 15-19 years 2 2 20-24 years 3 3 25-29 years 4 4 30-34 years 5 5 35-39 years 6 6 40-44 years 7 7 45-49 yeafcs 8 8 50 or more years 9 9 38. NUMBER OF SIBLINGS: (How many c h i l d r e n do you have?) one 1 two 2 three 3 four 4 f i ve 5 s i x 6 seven or e i gh t 7 nine or more 8 unknown 9 • 39. RANK (Was ORDER OF unknown f i r s t second t h i r d f o u r t h f i f t h on l y c h i I d other CHILD IN FAMILY: your?) 0 I 2 3 4 5 6 7 • 40. AGE GAP BETWEEN CHILD AND SIBLINGS: CHILD unknown one year two years three years four years f i v e years s i x or more OLDER SIB, 0 1 2 3 k 5 6 YOUNGER SIB. 0 1 2 3 k 5 6 41. SIBLINGS: (Are a l l your c h i l d r e n at home?) a l l a t home 1 some away 2 a l l away (except c h i l d ) 3 • 42. IS THERE ANYONE ELSE LIVING IN YOUR HOME: yes ( s p e c i f y ) 1 no 2 • 43. APPEARANCE OF CHILD: (Who does look l i k e in your f am i l y ? ) unknown 0 1 norma 1 1 1 looks retarded 2 • If 2, de s c r i be : 44. OCCUPATION: (Your occupat ion i s ? Your spouse ' s i s ? ) FATHER MOTHER unknown 0 0 p ro fe s s i ona l or manageeial 1 1 c l e r i c a l or s a l e s 2 2 s e r v i c e 3 3 a g r i c u l t u r e , f i s h , f on s t 4 4 s k i l l e d 5 5 semiski1 l ed 6 6 unski1 led 7 7 housewife 8 8 student 9 9 unemployed A A r e t i red B B other ( s pec i f y ) C C 45. PARENTS EDUCATION: (How f a r d i d you, your spouse. go in school ? ) FATHER MOTHER unknown 0 0 grade 1-5 1 1 grade 6-7 2 2 grade 8-9 3 3 grade 19-12 4 4 un iver s i ty 5 5 voca t i ona l 6 6 other ( s p e c i f y ) 7 7 46. PARENTS (Was RELATIONSHIP unkno unknown natura l s tepparent f o s t e r parent adopt ive parent absent - d i vo rce absent - separa t i on absent - death other ( s pec i f y ) TO CHILD: born to you and your FATHER 0 1 2 3 4 5 6 7 8 husband? ) MOTHER 0 1 2 3 4 5 6 7 8 *f7. NUMBER OF RELATIVES IN AREA: (Are both you and your husband's parents l i v i n g in t h i s are? What about brothers and s i s t e r s ? ) a) b) c) d) Respondent 's parents - n e i t h e r one Spouse's parents Respondent 's s i b s Spouse's s i b s both - n e i t h e r one both -none, one or some a l l ( s t a te no) -none some a l 1 ( s t a t e no) 1 2 3 1 2 3 1 2 3 1 2 3 48. FREQUENCY OF CONTACT WITH RELATIVES: (How o f t e n do you see y o u r r e l a t i v e s ? ) a) Respondent's paren e v e r y day 1 1-3 t i m e s a week 2 1-3 t i m e s month 3 1-3 t i m e s y e a r 4 never 5 n/a 6 • b) Spouse's p a r e n t s P c) Respondents' s i b s . [ j d) Spouse's s i b s . j j 49. AGE WHEN PROBLEM FIRST APPEARS: (At what age d i d you f i r s t n o t i c e something w i t h j I t h a t caused you some c o n c e r n o r d i d not seem q u i t e r i g h t ? ) ' ' unknown 0 0- 1 y e a r s 1 1- 2^ y e a r s 2 2^-5 y e a r s 3 6-puberty 4 a d o l e s c e n c e 5 don't know 6 50. FIRST RECOGNIZED PROBLEM RELATED TO: (SPECIFY) (What i n p a r t i c u l a r made you t h i n k t h i s ? ) S o c i a l - i n t e r f a m i 1 i a l 1 community 2 s c h o o l 3 M e d i c a l ( p h y s i c a l ) 4 I n t e l l e c t u a l - c o g n i t i v e development 5 l e a r n i n g problems 6 Developmental l a g s 7 M u l t i p l e problems ( s p e c i f y ) 8 • COMMENTS: 51. PARENTS PERCEPTION OF PROBLEM: a) How s e r i o u s d i d you t h i n k t h i s might be? "no p r o b l e m " 1 1 m i l d 2 J 1 v e r y s e r i o u s 3 b) Was t h i s some t h i n g you f e l t t h a t you and y o u r f a m i l y c o u l d h a n d l e ? yes 1 u n c e r t a i n 2 no 3 ' 52.- WHO DSD "ARttfTS FiRST 1AI.K TO REGARD!NG THE PROBLEM: (Who was tha f i r s t person you talked to about th is ? ) unknown re la t i ve (specify) 0 1 • 2 physician 3 ch i l d spec:Sal sst psych latrssfc 5 soc ia l worker 6 pub! fc he-aith ruK 7 school ;ier:i^ ?P-:i 8 other (specify) ..1 ri> 1 A G E OF CHILD A T TH£S TIM*; (How old was ur.K nov;n 0- 1 yr. 1- 2 i v r . adolescence at this, t itrt?) 0 1 2 3 5 54 . PARENTS." FSfcLINSS THIS iHfTIAL CONYSRSATISK: (Was th i s conversation helpful or not?) ;v.ytr?.<? 2 3 P • (Spaclfy, fjsvi; rerisor: for and rata each consultation or a c t i v i t y the ch i l d has wr-spg^ e! I;: ~ pr ior to school year 666- 67) (supportive,neutral,Impeding) Uno: . Way: Rate: Age §f Chi Hi i 3rdlTct'i;:?;uU-.iit k.?*; Who: Why: Rate: Age of Chi ld: . kxh CotiStt I fcet * Who: . _ Why:„ Rate: Age of Child? S.th ConsuIVttlon; w " ° i . . .... Why: Rate: Age of Ch i l d : 55. CONT'D 6th C o n s u l t a t i o n : Who: Why: Rate Age o f C h i l d : 7th Consul t a t i o n : Who: WhY: Rate Age o f C h i l d : 8 t h C o n s u l t a t i o n : Who: Why: Rate Age o f C h i l d : 9 t h C o n s u l t a t i o n : Who: Why: Rate Age o f C h i l d : 10th C o n s u l t a t i o n : Who: Why: Rate: Age o f C h i l d : 56. WHO MADE THE FIRST PROFESSIONAL ASSESSMENT OF THE CHILD: unknown 0 phys i c i a n 11 p s y c h i a t r i s t 2 s c h o o l p e r s o n n e l 3 o t h e r ( s p e c i f y ) k none made y e t 5 57. AGE OF CHILD AT TIME OF THIS ASSESSMENT: unknown 0 0- 1 y r . 1 1- 2i y r s . 2 2£-5 y r s . 3 6-puberty h a d o l e s c e n c e 5 60. AFTER THE FIRST PROFESSIONAL ASSESSMENT (IF THERE WAS ONE) WERE OTHER PROFESSIONALS SEEN: unknown 0 yes 1 no 2 61. IF YES, WHY: • 58. TREATMENT RECOMMENDED: (Did t h i s p r o fe s s i ona l person g ive you any suggest ions or recommend anyth ing in p a r t i c u l a r ) unknown 0 medical 1 p s y c h i a t r i c / i n pa t i en t 2 p s y c h i a t r i c out pa t i en t 3 remedial he lp in l e a r n i n g k s p e c i a l c l a s s placement 5 s p e c i a l p lay school 6 f a m i l y therapy 7 no recommendation 8 other ( s p e c i f y ) 9 59. TREATMENT CARRIED OUT: (Was t h i s c a r r i e d through) yes 1 1 1 no 2 p a r t i a l l y 3 don 11 know k N/A 5 [ J t- fci, HY  I 1 (How d i d you come to see more than one p ro fe s s i ona l person?) | | unknown 0 r e f e r r a l from p ro fe s s i ona l 1 s e l f r e f e r r a l 2 parents approach by another 3 other ( s p e c i f y ) k COMMENTS: 62. SOURCE OF AID FOR PARENTS: (Who d i d you see f o r adv ice f o r y o u r s e l f ? ) DATE CONTACT REASON HELPFUL 1 d i d see someone f o r s e l f d i d not see anyone f o r s e l f some of c h i l d ' s contact were h e l p f u l f o r s e l f 63. OF ALL THE CONTACTS, WHICH WAS THE MOST HELPFUL: • WHY: 6k. IF YOU WERE GOING TO SEEK FURTHER HELP NOW, WHO WOULD YOU APPROACH: WHY: 6 5 . HOW MIGHT THE EXISTING SERVICES BE MORE HELPFUL: 66 . WHAT SERVICES MIGHT BE HELPFUL WHICH ARE NOT PRESENTLY AVAILABLE: 6 7 . ADDITIONAL COMMENTS: 6 8 . PARENTS ESTIMATE OF CHILD'S 1.0.. _ y r s . months C.A. * I.Q.. 6 9 . WHAT DO YOU FEEL ABOUT YOUR CHILD'S FUTURE: APPENDIX D Se l f - Adm in i s t e red Quest ionna i re SELF ADMINISTERED QUESTIONNAIRE FOR PARENTS OF CHILDREN IN SPECIAL CLASSES !NTERV!EW FORM I I Sec t i on of C h i l d P s y ch i a t r y F acu l t y of Medic ine U n i v e r s i t y of B r i t i s h Columbia STUDY NUMBER: PARENT: Mother 1 Father 2 DATE OF BIRTH: ' Day Mth Y>. ADDRESS: 5. DO YOU FEEL THAT YOUR CHILD HAS SPECIAL NEED FOR HELP FROM ANY OF THE FOLLOWING: (Check the app rop r i a t e column) 1 2 3 4 5 6 To a great ex tent a l o t some a 1 i t t l e not a t a l l not a p p l i -cab le REASON School 1 Medical 2 Community Rec rea t i on Serv i ces 3 Community Soc ia l Se rv i ces 4 * immediate Family (H,W and s i b l i n g s &f Hus. ang Wife Other r e l a t i ves 6 M u l t i p l e ( s p e c i f y ) 7 6. TO WHAT EXTENT HAVE THE FOLLOWING PERSONS GIVEN YOU AND YOUR CHILD THE HELP THAT WAS REQUIRED OVER THE YEARS: 1 2 3 4 5 6 to a great extent 1 a l o t some a 1 i t t l e not a t a l l not a p p l i -cab le REASON Husband 1 i Wife 2 Other Chi 1dren 3 Aunts and Uncles 4 Grand parents 5 Neighbour 6 s 7. TO WHAT EXTENT HAVE THE FOLLOWING AGENCIES GIVEN YOU AND YOUR CHILD THE HELP THAT WAS REQUIRED OVER THE YEARS: ( P l e a s e s p e c i f y t h e p e r s o n s o r p l a c e s i n p a r t i c u l a r you a r e t h i n k i n g o f fre: s o c i a l w o r k e r , p s y c h o l o g i s t , e t c . ) 1 2 3 4 5 6 t o a g r e a t e x t e n t a l o t some a 1 i t t l e n o t a t a l l not a p p l i c a b l e REASON Communi t y R e c r e a t i o n S e r v i c e s 1 Community S o c i a l S e r v i c e s 2 E d u c a t i o n 3 Med i ca1 k APPENDIX £ I n t e r v i e w e r ' s R a t i n g o f P a r e n t s INTERVIEW RATING OF PARENTS OF CHILDREN  IN SPECIAL CLASSES INTERVIEW FORM I 11 S e c t i o n o f F a c u l t y o f U n i v e r s i t y C h i l d P s y c h i a t r y M e d i c i n e o f B r i t i s h Columb AWARENESS (OF DEGREE OF RETARDATION IN CHILD) a) Hot aware o f any degree o f r e t a r d a t i o n i n c h i l d (because o f l a c k o f i n s i g h t , d e n i a l , e t c . ) b) I n t e r m e d i a t e awareness; f e e l c h i l d i s ' s l o w 1 i n some a r e a s but not a l l ; see o t h e r s l o w a r e a s as r e l a t e d t o e m o t i o n a l o r m e d i c a l problems. c) F u l l awareness o f the degree o f r e t a r d a t i o n i n c h i l d , r e a l i s t i c a b o ut c h i l d ' s c a p a c i t i e s 2. UNDERSTANDING (OF CAUSE. MEANING AND PROGNOSIS OF RETARDATION) a) M i n i m a l o r no u n d e r s t a n d i n g o f the meaning o f r e t a r d a t i o n ; f e e l c h i l d c o u l d l e a r n " i f he t r i e d t o " o r blame h i s sl o w n e s s on some o t h e r c a u s e ; v e r y u n r e a l i s t i c i n r e g a r d t o f u t u r e 1 b) I n t e r m e d i a t e u n d e r s t a n d i n g ; unsure o f c a u s a t i o n , unsure o f f u t u r e , t e n d t o f e e l t h a t t h e s p e c i a l c l a s s w i l l b r i n g him up t o t h e same l e v e l a s h i s age-mates 2 c) Good u n d e r s t a n d i n g o f t h e meaning o f r e t a r d a t i o n and r e a l i s t i c a b o ut t h e c h i l d ' s f u t u r e 3 3. PARENTS' EMOTIONS (IN DI6CUSSING THE CHILD'S HANDICAPS) AND IN DISCUSSING DAY TO DAY DEALINGS WITH CHUD  More e m o t i o n a l l y b a l a n c e d o r more a b l e t o c o n t a i n d i s t u r b e d f e e l i n g s 1 I n t e r m e d i a t e e x p r e s s i o n o f e m o t i o n 2 De p r e s s e d , g u i l t y o r a n x i o u s 3 k. ACCEPTANCE OF CHILD v e r y a c c e p t i n g , s e n s i t i v e t o c h i l d ' s needs, a t t e m p t t o i n c l u d e c h i l d w h o l e l y i n f a m i l y c i r c l e and as one who can c o n t r i b u t e t o the f a m i l y 1 I n t e r m e d i a t e a c c e p t a n c e - d i s p l a y o f some a m b i v a l e n t f e e l i ngs 2 R e j e c t i n g - o c c u p i e d w i t h c h i l d ' s l i a b i l i t i e s , a n g r y about c h i l d ' s h a n d i c a p s , tendency t o e x c l u d e c h i l d f r o m f a m i l y c i r c l e and b e l i t t l e h i s c o n t r i b u t i o n s t o the f a m i l y 3 APPENDIX F Q u e s t i o n n a i r e t o Teachers To the Te a c h e r : A s u r v e y i s p r e s e n t l y b e i n g c o n d u c t e d by.the Department o f M e d i c i n e , U.B.C., on the c h i l d r e n i n S p e c i a l c l a s s e s . Some a d d i t i o n a l i n f o r m a t i o n i s needed and we would be g r a t e f u l t o you i f you c o u l d f u r n i s h i t f o r u s . Re: C h i l d ' s Name School 1. As f a r as you a r e a b l e t o d e t e r m i n e , i s E n g l i s h the language spoken a t home by t h i s c h i l d ' s p a r e n t s ? yes Q no Q I f you t h i n k n o t , p l e a s e s p e c i f y t h e language you b e l i e v e i s spoken i n t h i s c h i l d ' s home 2. D u r i n g the s c h o o l y e a r 1966-67, how o f t e n d i d you speak w i t h one or both o f t h i s c h i l d ' s p a r e n t s ? once j j t w i c e j j 3-4 t i m e s j j more than 4 times j j not a t a l 1 j j 3. How would you r a t e t h i s c h i l d ' s g e n e r a l b e h a v i o r i n the c l a s s r o o m ? v e r y good j j average j j v e r y poor j j P l e a s e complete t h i s f o r m and r e t u r n i t t o the Department o f Re s e a r c h and S p e c i a l S e r v i c e s by October 10, 1967-Thank you f o r your c o - o p e r a t i o n i n t h i s s u r v e y . E'.N. E l l i s , A s s i s t a n t D i r e c t o r , R e s e a r c h and S t a n d a r d s APPENDIX G I n f o r m a t i o n from School Board Records INFORMATION FROM SCHOOL RECORDS FOR SURVEY OF PARENTS OF CHILDREN IN SPECIAL CLASSES S e c t i o n o f C h i l d P s y c h i a t r y F a c u l t y o f M e d i c i n e U n i v e r s i t y o f B r i t i s h Columbia CHILD'S STUDY NUMBER: j 1 1 130-132 ATTENDANCE: unknown 0 r e g u l a r 1 i r r e g u l a r - 2 TESTS: (most r e c e n t l y a d m i n i s t e r e d t e s t s s i n c e placement i n s p e c i a l c l a s s ) a) C.A. b) c ) M.A. i.a. unknown 0 -49 50 - 5 9 60 - 6 9 70-79 80-89 90-99 100-109 > 110 0 1 2 3 4 5 6 7 8 • if^ NTH • 133 134 -137 138-141 142 TEST: ( T e s t a d m i n i s t e r e d b e f o r e placement i n s p e c i a l c l a s s ) a ) C.A. b) M.A. c ) I.a. COMMENTS ON BEHAVIOUR IN SCHOOt: unknown gcod q a v e r a g e poor COMMENTS: 0 1 2 3 1 1 • • 143-146 147-150 151 152 COMMENTS ON COUNSELLING GIVEN CHILD AND/OR FAMILY (OR ADVICE): HOME V I S I T OR TELEPHONE CONTACT AT TIME OF SPECIAL CLASS PLACEMENT: (between p a r e n t s and School Board) School Board f e e l s p a r e n t s f u l l y u n d e r s t o o d r e a s o n s f o r placement and a r e i n agreement 1 School Board u n c e r t a i n o f p a r e n t s ' u n d e r s t a n d i n g 2 P a r e n t s d i s a g r e e d o r d i d not u n d e r s t a n d but a g r e e d t o placement 3 COMMENTS: f 153 APPENDIX H T a b l e s X X I I , XXVI,. XXVII TABLE XXI l . j D e v i a t i o n o f P a r e n t l.0_. from T e s t I.Q.. and R a t i n g o f P a r e n t Awareness no awareness some |fu11 awareness Not a b l e t o e s t i m a t e I.Q.. 3 7 6 16 P a r e n t s I.Q.. w i t h i n 10 points below t e s t 0 5 k 9 W i t h i n 10 p o i n t s above t e s t I.Q.. 0 9 8 17 J G r e a t e r than 10 p o i n t s below 0 2 1 3 G r e a t e r t h a n 10 p o i n t s above 5 6 5 16 8 29 2k TABLE XXI I. Age of C h i l d when Problem F i r s t R e c o g n i z e d and P a r e n t s ' F e e l i n g s about C o n t a c t s w i t h R e g u l a r C l a s s Teacher s u p p o r t i v e n e u t r a l imped i ng unknown Recogn i t ion b e f o r e age 2^ - 11 5 1 1 2 R e c o g n i t i o n a f t e r age 2_; 6 9 3 TABLE X X V I l ; i Age o f C h i l d when Problems F i r s t R e c o g n i z e d and p a r e n t s ' R e p o r t s o f who I n i t i a t e d t he S p e c i a l C l a s s Placement p a r e n t i n i t i a t e d o t h e r j R e c o g n i t i o n b e f o r e age 2j 8 21 R e c o g n i t i o n a f t e r age 2^ 6 26 

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