Inclusive and Supportive Education Congress
International
Special Education Conference
Inclusion: Celebrating Diversity?
1st - 4th August 2005. Glasgow, Scotland
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Inclusive and Supportive Education Congress 1st - 4th August 2005. Glasgow, Scotland |
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WITH FETAL ALCOHOL SPECTRUM DISORDER:
PERSPECTIVES OF PARENTS AND THEIR CHILDREN
Cheryll Duquette, Ph. D.
Emma Stodel, Ph. D.
Stephanie Fullarton
Karras Hagglund
Cheryll Duquette, Ph. D.
University of Ottawa
145 Jean Jacques Lussier
Ottawa, Canada K1N 6N5
cduquett@uottawa.ca
The purpose of this study was to examine persistence in school among students with fetal alcohol spectrum disorder (FASD) from the perspectives of the students themselves and their parents. Tinto’s (1975, 1997) Student Integration Model (SIM) provided the theoretical framework for this research. This model involves an interplay between (a) background characteristics and attributes affecting the level of goal commitment, (b) level of academic integration, and (c) level of social integration into the institution that determine whether or not a student will graduate. The findings showed weak support for Tinto’s SIM and that parental advocacy is strongly linked with persistence among adolescents with FASD. A new model showing the parents’ role in encouraging persistence through their actions at home and advocacy at the schools is presented.
Fetal Alcohol Spectrum Disorder (FASD) is a new term incorporating Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FAE). FASD refers to a constellation of physical and mental birth defects that may develop in individuals whose birth mothers consumed alcohol during pregnancy. Individuals with FASD have varying degrees of permanent brain damage that affects their cognitive, social, and emotional functioning, as well as their vocational and educational success. Those diagnosed with FAS also have specific facial features and experience growth retardation and central nervous system disorders (Stratton, Howe, & Battaglia, 1996). Persons with FAE may have none of the distinctive growth and facial features, but do have deficits in the other areas. Although invisible, FAE may have equally serious implications as FAS for academic success, social inclusion, and emotional well being (Burgess & Streissguth, 1990; Graefe, 1998).
It is known that a significant proportion of people with FASD have below average IQs (Steinhausen, Willms, & Spohr, 1993). Hence, many individuals with FASD experience learning problems, academic failure, and eventually drop out of high school (Streissguth, Barr, Kogan, & Bookstein, 1996). Yet despite these educational difficulties, some adolescents do persist and graduate (Duquette & Stodel, in press). The purpose of this study is to explore the educational experiences of adolescents and young adults with FASD who are still in high school or who have recently graduated, with a view to determining those conditions contributing to persistence.
Most of the previous studies on FAS/FAE have focused on incidence (Habbick, 1996), the medical diagnosis of children with this condition (Church & Gerkin, 1988), IQ scores (Burgess & Streissguth, 1990; Streissguth, Sampson, & Barr, 1989), and typical behaviors (Streissguth & Randels, 1988). At this point there are few studies involving individuals with FASD in an educational context. Johnson and Lapadat (2000) surveyed the literature on FAS/FAE and found similarities in the reported learning characteristics and recommended interventions between these groups. Their research documented the interventions used in a tutoring situation with an adolescent with FAE. It was found that the girl benefited from using a visual tool to organize her ideas before writing, spotting errors by reading her work orally, instruction in reading, spelling, and learning strategies.
In a second study 20 individuals with FAS/FAE between the ages of 15 and 20 were interviewed to determine their perceptions of school. Most reported having disrupted school experiences marked with suspensions, expulsions, and dropping out (Gorman, 1995). In another study, the educational experiences of individuals with FASD were explored from the perspectives of the individuals themselves and their parents (Duquette & Stodel, in press). The participants consisted of 7 adopted children/adolescents/young adults ranging in age from 9 to 28 and 11 parents of children with FASD. Data were collected through questionnaires consisting mostly of open-ended items and semi-structured interviews. Those with FASD experienced learning difficulties, or behavioural problems, or both. Similar to previous studies on students with disabilities, it was found that caring teachers and appropriate programs contributed to successful school experiences. Parents also stressed the need for a consistent and structured home environment, the importance of having a diagnosis, and necessity to advocate on behalf of their children. Another finding was that those participants in their twenties had dropped out of high school, but those who were still adolescents were persisting in school or had recently graduated. However, the reasons for this difference in educational outcomes were not clear.
Student Integration Model (SIM)
The theoretical framework guiding this study was Tinto’s (1975, 1997) Student Integration Model (SIM) that postulates why post-secondary students drop out or persist and graduate. Tinto (1975) originally developed the SIM as a model of dropping out that presented three variables that help explain the phenomena: (a) background characteristics and attributes affecting the level of goal commitment (personal attributes, previous experiences, and family situations which may affect educational expectations and commitments), (b) level of academic integration (grade performance and intellectual development), and (c) level of social integration (informal peer group associations, semi-formal extracurricular activities, and interaction with teachers). It is the interplay of these variables that determines whether or not a student will drop out of school.
In 1997, Tinto revised the SIM and changed the focus from dropping out to persisting and posited that institutions should promote the development of learning communities in order to retain students. To achieve this goal, Tinto forwarded that academic and social support should be available to students. Tinto further suggested that tutoring and study groups are ways of providing academic support, and social support may be given through counseling. Another change was that the core element of academic integration was modified to mean that the institution must have high expectations for student success, which may be expressed in the level of intellectual work required of students and the degree to which students see learning in classrooms as challenging.
Tinto’s earlier version of the SIM has been criticized as only applying to traditional, majority students who are younger and live on campus (Rovai, 2002; Torres & Solberg, 2001; Towles & Spencer, 1993). However, Tinto countered that the first version of the model was designed for typical university students living on campus and enrolled in four-year programs. Regardless of the criticisms, the SIM has been used as a basis by universities in the U.S. to study dropout and retention (Purdue University and the University of South Florida). The SIM has also been used to examine high school dropout (Holland, 2003). Therefore, the SIM, which will include the core elements of the original version and the additional components of the revised model, will provide the theoretical framework for this research.
Therefore, the purpose of this study was to examine the school experiences of adolescents and young adults with FASD from the perspectives of the individuals themselves and their parents. Tinto’s (1975, 1997) SIM provided the theoretical underpinning for this investigation which was guided by the following research questions:
A phenomenological strategy was used in this qualitative study as it emphasizes the individual’s lived experiences and seeks his or her perceptions and meanings of the phenomenon or experience. The intent is to understand and describe the event from the point of view of each of the participants (Mertens, 2005). In this case, the purpose of the research was to understand the educational experiences of adolescents and young adults with FASD from the perspectives of the individuals themselves and their parents.
The participants in this study included 8 adolescents/young adults and 16 parents, who resided in either Canada or the United States. The adolescents/young adults ranged in age from 15 to 20 (6 females and 2 males). There were 6 Canadians (4 females and 2 males) and 2 Americans (2 females). The criteria for inclusion were a) to have FASD and b) to attend a high school or have recently graduated. All of these participants had a diagnosis of Fetal Alcohol Syndrome, Fetal Alcohol Effects or Alcohol-Related Neurodevelopmental Disorder (ARND), which had been obtained by their parents before they entered high school. Of the 8 adolescents/young adults who participated, 2 were enrolled in or had just graduated from private school placements (schools for students with learning disabilities) and the others were in a combination of special education and regular education classes. The type of classes and ratio of special education to regular education varied with the students according to their needs and interests.
The 16 parents had all adopted their children with FASD as infants or pre-school children. The selection criterion for this study was that they must be a parent of an adolescent or young adult with FASD who was either still in high school or had recently graduated. Thirteen of the parents had a diagnosis for their children (4 FAS, 4 FAE, and 5 ARND), and 4 did not (2 were planning to obtain one, 2 had not because there were no facilities). Of those who did not have a diagnosis, they all strongly suspected FASD because they were aware of the birth mother’s drinking behaviours and/or their child fit all of the criteria for FASD. Parents were recruited through a notice that appeared on the FASLINK and OLDERFAS websites. Interested parents were asked to contact the principal investigator and a questionnaire package was mailed to them. They were also asked if they felt that their son or daughter might be interested in participating. If there was a possibility, then a package for adolescents/young adults was also mailed to him or her. Participants could later engage in an individual interview if they chose, and almost all of them did.
Although the participants lived in various parts of Canada and the United States, they were all middle-class as they either had home computers with an Internet connection or had access to computers at their place of employment. As well, three of the children had attended private schools at some point in their educational career. Hence, while they came from diverse regions of the continent, they were fairly homogeneous in terms of social class.
Data were collected from the parents and children using questionnaires and in-depth interviews. The questionnaire items and interview protocols from a pilot study were adapted to reflect Tinto’s (1975, 1997) Student Integration Model. The questionnaire for the adolescents/young adults required participants to respond to open-ended items about themselves, school and work experiences, perceptions of what it means to have FASD, social affiliations, extra-curricular activities, and hopes for the future. The questions were simply written to ensure understanding. Sample questions were, “What does being successful at school mean to you?”, “Do you feel comfortable with the kids at school?” Respondents were encouraged to write their answers in point-form if they preferred.
Parents were also mailed a questionnaire designed to obtain information about their child and his or her educational experiences. They were also asked to describe the process of obtaining a diagnosis, the services the child received in the schools, the nature of their child’s social inclusion at school, the elements of a successful school experience, and their concerns and aspirations for their child. Aside from the few demographic items about their child, most questions were open-ended.
Individuals who completed a questionnaire had the opportunity to participate in an in-depth semi-structured interview. It was during the interviews that participants had the chance to elaborate on their individual stories (Marshall & Rossman, 1999). All but one interview was conducted by telephone; a single interview was done through e-mail. Approximately half were tape-recorded and transcribed verbatim, and for the remaining interviews the researchers recorded the participants’ responses by hand. All participants received a copy of the transcript through e-mail attachment and were given the opportunity to revise it to ensure that the responses best reflected their views.
The data from the parent questionnaire and interviews were analyzed by grouping the data according to the item in the instrument. They were then arranged into categories and subcategories (Miles & Huberman, 1984). Frequency counts were done to determine if a reasonable number of cases fit the model and negative cases were examined to determine why they did not. Emerging themes were then noted. The data from the adolescent/young adult instruments were analyzed in the same way as the parent data. All data were analyzed manually to facilitate engagement with the findings (Charmaz, 2000).
Lincoln and Guba (2000) describe trustworthiness as a positive response to the question, “Are these findings sufficiently authentic … that I may trust myself on acting on their implications?” (p. 178). For this study multiple measures were implemented to achieve trustworthiness. Credibility refers to the correspondence between the researcher’s portrayal of the participant’s viewpoints and the way those individuals actually perceive the phenomena (Mertens, 2005). Using multiple sources of data, employing negative case analysis, and conducting member checks enhanced the credibility of the findings. Transferability was achieved through the use of multiple cases, and a confirmability audit was conducted by a research assistant to ensure that the summaries could be traced back to the original sources (Mertens, 2005). Periodically the principal researcher conducted a dependability audit to ensure that the instruments were producing relevant data. Finally, the principal investigator and research assistants analyzed the data independently and were in agreement with the findings.
In this section the findings related to the school experiences of students with FASD, their background characteristics, and academic and social integration will be described.
The high school placements as explained by the parents of children with FASD varied according to the needs and availability of programs. Most of the adolescents were enrolled in programs that combined regular classroom placement with special education classes, and sometimes with a paraprofessional and vocational courses. Generally, the students took math and English courses in a special education class where small group instruction was available, and they had accommodations for all of their courses. Two of the teens were placed in segregated special education classes where they were instructed in literacy, numeracy, and life skills. Two Canadian adolescent girls attended private schools for students with learning disabilities schools: one had just graduated with a Grade 12 diploma and the other was in Grade 10. Some of the adolescents were all in programs leading towards a Grade 12 diploma, while others were accumulating sufficient credits for a school-leaving certificate.
Parents reported that all of their children received accommodations at high school. Most took basic level courses where the work was modified in terms of expectations for quality and quantity of work. Six of the adolescents took courses in the resource room and 4 had the assistance of a paraprofessional. Others had testing support, permission to leave the classroom if feeling frustrated or overwhelmed, and homework assistance. One mother wrote of the accommodations made for her daughter: “Absolutely essential for continuing for continuing success! Without that she would have dropped out of school & most likely be living on the streets with drug/alcohol/prostitution life style!!! Suicide completion is a reality!!!” Although most parents and children reported that these accommodations were very important, a few were dissatisfied. One Canadian mother stated that her daughter had social problems (needed protection and a safe place), but the accommodations only addressed her academic needs. Another Canadian mother commented, “The accommodations were not solid enough to help. The teachers did not follow through.”
While a few of the adolescents remained in the same school throughout high school, others did not. Those expecting to attend only one school or who had done so were those for whom the program met their needs. One Canadian girl had just graduated from a private school whose academic and work experience programs met her needs. Another girl had recently graduated from a high school in the United States that offered many arts courses, which was an area of strength for her. In both cases, the mothers sought information on various schools and were fortunate to find ones in which their daughters were successful. Two boys (one American and one Canadian) were in special education programs and expected to remain there for their entire high school career as the programs more closely met their needs than others. Two other boys either attended or would attend a single high school because it was the only one in the vicinity. In both of these cases, the parents advocated strongly for programs and accommodations for their sons. Although the American parents attended IEP meetings with their lawyer, both sets of parents were only moderately satisfied with the appropriateness of the programs offered at the local high schools. However, there were no other options in their geographic area.
For those adolescents whose program consisted of a combination of integrated and special education classes and who lived in urban centers, there was more movement between schools. In one case, the parent had to remove her daughter from the local high school for social reasons and home schooled her. In another case, the girl’s academic and social needs were not being met in the neighbourhood high school and her mother found another school in the city that would provide a higher proportion of integrated classes than she was receiving. One mother of twins and the parents of a girl in Grade 10 anticipated a move to vocational schools in the senior high school years because it was felt that the vocational programs would better meet the needs of their children. Hence, parents were in tune with the goodness of fit between the academic and social needs of their children and the programs available in their area. They were also prepared to advocate for changes in programs or accommodations, or when possible, move their children to a more appropriate school or program.
Seven of the older adolescents had been involved in vocational or work experience courses. Others had not because these courses are only offered in the senior grades and not always at private schools. Only two males had taken vocational courses. A Canadian enjoyed the woodworking and metal shops, but hated the computer component. An American boy also enjoyed the hands-on work, but his mother reported that the academic component frustrated him. The type of work experience placements included the following: assistant physical education teacher at an elementary school, cook’s assistant, installer of security and sound systems, school maintenance, and a worker in an office (shredding paper), thrift store, animal shelter, and school cafeteria.
Surprisingly, despite the requirements in the United States and Canada for transition plans, only one adolescent had one, and the parent described it as “ineffective.” Nevertheless, the parents were definitely planning for the next phase of their children’s lives. The parents of a 15-year-old girl presently attending a private school were considering moving her to a technical school for grades 11 and 12 so that she could receive vocational training. Two other girls had recently graduated from high school (1 Canadian and 1 American) and were both in transitional programs that had been arranged by their parents. The Canadian girl was now in a privately run two-year transition vocational program consisting of math and literacy courses and employment preparation with work experience. It was offered to individuals who had previously been in special education programs. The American program was similar. A parent from the United States whose son is now in Grade 12 stated that he would go on to vocational rehabilitation at the end of the year. She also mentioned that he has already had “a couple of sessions with a counselor there” and the program consists of “job shadowing, anything to do with getting a job.” Another American parent stated that her 17-year-old son would move to a post-secondary life and job skills program that would last until age 22. A Canadian mother of a 20-year-old son reported that he receives a disability pension and will take an employment program when he finishes high school. Generally, parents of older adolescents and young adults with FASD sought transition programs that would provide work and life skills, as well as continued academic upgrading. Parents felt that their children needed more time to mature before assuming the responsibilities of a job. One parent of a daughter enrolled in a transition program stated, “She’s way too young inside.” Most parents felt that their children needed more training and time to mature before employment, and a transition program appeared to meet those needs. However, it was the role of the parents to find and in some cases pay for this post-secondary training.
Although transition programs were a popular post-secondary choice, one American mother stated that her son who had received remedial English in Grade 12 (Gr. 4 reading level) would be attending the university where she was employed. He would be admitted as a student with learning disabilities and receive support from the special services department. However, she was concerned because the university expected him to advocate for himself, but it appeared that he was not ready to take on that responsibility. On the contrary, a parent of an adolescent in Canada stated that there was no transition plan for her son because “he is not willing to plan for this stage in his life.” She explained that he had not accepted that he has ARND or neurological defects and was presently working for his father’s construction company.
In summary, the adolescents in this study were either attending high school or had recently graduated. Some were enrolled in special education placements (self-contained classes or schools for those with learning disabilities); however, most were in a combination of integrated and special education classes. The comments of parents showed that they were aware of the strengths and needs of their children and were regularly monitoring the placements of their children for appropriateness. Moreover, they were prepared to advocate for accommodations and move them if the current placement was ineffective and if others that were potentially better suited were available. Parents also indicated that they were not relying on the schools to organize transition programs and many parents of older adolescents had made arrangements for post-secondary life skills and vocational programs for their children on their own initiative.
Most parents had obtained a diagnosis for their children, and in many cases it was done before the child entered kindergarten. Six had been diagnosed as having ARND, which is not surprising as these were adoptive children, and it was not always possible to contact the birth mother for confirmation of drinking during pregnancy. Three had FAE and another 4 were diagnosed with FAS. One Alaskan mother whose son was diagnosed with FAS at birth was born at 23 weeks with a blood alcohol level of .237. While some parents had a diagnosis when they adopted their son or daughter, others expressed frustration at having to wait for one. In some cases the professionals did not know much about FASD and were not sufficiently skilled to provide one. A Canadian mother whose daughter was first diagnosed with ADHD commented that the process “took far too long!!!” Moreover, the many “professionals who knew next to nothing about FASD” insisted that her daughter did not meet the requirements for a diagnosis because she lacked many of the characteristic facial features of FAS. In other cases the schools were unwilling to assess their children. One American mother stated, “We fought for 12 years with the school district for an assessment.” In many cases, parents felt that time and energy had been wasted during the long process of obtaining an accurate diagnosis.
In some cases, parents had obtained a diagnosis of ADHD, but felt it did not adequately describe the behaviours and characteristics of their children. Hence, they continued to look for another cause of their child’s deficits. It was generally through reading, the Internet, and television that parents became aware of FASD. As they became more familiar with the syndrome, they noted similar characteristics in their own children. Then they attempted to have their child assessed. They investigated the locations of specialized clinics that diagnosed individuals with FASD. However, in some cases it was simply not possible to obtain a diagnosis. One mother said, “I’m still trying to get my child a clinical diagnosis but it is very hard. Very little is still known about FASD in the education system, medical system, and this should have happened many years ago.” The table below shows the characteristics reported by parents of their children with FASD.
TABLE 1 Approximately here.
Given the above characteristics, it is not surprising that parents reported their children displayed the following behaviours at school: aggression, defiance, short attention span, at-risk behaviours, and problems with unstructured environments. Moreover, 7 had been suspended from school, and one girl had at least 25 suspensions. The children’s IQ scores ranged from borderline to average, and those with an average IQ had marked strengths and weaknesses. One mother commented, “… her verbal IQ was 128 and her performance IQ was 80 something, so there was a wide gap.” Academically, these adolescents had problems in math (12), reading (8), and social sciences (3). To address these needs, all of them had IEPs and 2 had been enrolled in special education pre-schools, while the others were either identified in elementary school or began receiving assistance then. Only 7 of 16 parents commented on the relative strengths of their children: hands-on work (computers, mechanical, lab science) and the arts (music, visual arts). Two stated that their children had no strengths. Despite their weaknesses, some of the adolescents were goal-oriented and worked hard to complete Grade 12. However, a few parents felt that their adolescents were losing interest and would quit if possible.
All but one child began school in a regular elementary school and when problems developed, the parents advocated to have them moved to more specialized settings offering smaller class sizes (e.g., special education classes, private schools, or home schooling). Despite their academic lags, only 5 children repeated a grade, in some cases due to the board’s no-failure policies. Nine parents hired tutors for reading and math, but 4 others reported no need for them as their children’s needs were met in school as a result of the accommodations provided.
Despite the academic difficulties these children with FASD had in school, their parents provided continuous support and encouragement for them. All of the parents advocated for accommodations and appropriate programs for their children. They also tried to educate the teachers about FASD and the needs of their children. In some cases they provided home schooling when the current placement was not working and there were no other options. Most parents helped with homework, and they all provided encouragement and emotional support for their children.
The 8 students directly involved in this study indicated that a successful school experience meant being able to participate academically. Four felt that being successful related to passing courses, one felt it was earning her diploma, another commented, “Finish what you start,” and another wrote, “Doing my work.” Like other adolescents, they wanted to be able to complete the work to pass their courses and obtain a certificate or diploma upon leaving high school. One girl who had just recently graduated from Grade 12 enthusiastically described the difference in her academic engagement between her years in the public school and at a private school.
At the beginning, academically when I went to school I never knew what was going on. … In the public system, I was always in the back of the class, kind of drawing or whatever, but when I went to Foothills Academy I actually put my hand up. I wanted my stuff to be marked. I was actually involved. I had my homework in on time. I understood what I was doing. It was the best. I have to say from the first day I was at Foothills Academy, I knew it was the right school for me…
When asked if they were satisfied with their marks, the adolescents’ responses were mixed. Three commented that they were satisfied with their marks (1 male in a special education class, 2 females in special education classes + integration), and four responded that they were not satisfied (2 females and 1 male in special education classes + integration, 1 female in a private school). Only one female in a private school indicated that she was happy with some marks and disappointed with others. A participant who just graduated from an American public high school commented, “I work real hard for my grades and I try to get As. I don’t have as many tough classes as some kids but I probably work a lot harder.” The findings show that some of them wanted a higher result than just a passing mark, which suggested some academic engagement despite their cognitive deficits.
Some of the adolescents indicated that they were proud of their academic accomplishments. One Canadian boy spoke of his Grade 2 teacher who told his parents that he would never learn to read. However, with the help of his mother, who home schooled him, he did develop reading skills. He continued, “I can read the newspaper. I know the words and what they mean. I love reading. I read books.” Another participant who recently completed Grade 12 in a private school mentioned that she was particularly pleased with her mark in her social studies course. However, some parents of children in the public school system were not satisfied with the overall intellectual development of their children. The mother of a son with severe disabilities acknowledged that school provides a structured environment, but that she didn’t “see him making progress in terms of the big picture. He isn’t learning how to get or keep a job and to live as a functioning member of society.”
One girl observed, “Special needs [classes] are way too easy for me. [But] I can’t do the work in the regular class. I’m kind of in the middle.” Her mother commented that although she is in high school, “there has been little change in her academic ability: she has plateaued at a Grade 4 level.” Another mother was disappointed with her son’s results in English. She explained, “In high school he was getting Bs in English, yet he could not write coherently. I told his teacher, ‘You have failed him as a student.’ I later found out that as a senior in high school, he was at a Grade 4 reading level. In Grade 12 he took a remedial English course, and it helped him.”
In summary, the findings show that although these adolescents with FASD took some modified courses and had accommodations, they wanted to be challenged and engaged in the academic work of the classroom. They also wanted to pass their courses and graduate. The degree to which this occurred appeared to be related to the type of placement. The parents of the two girls at private schools enthusiastically described the small classes and many accommodations their daughters received. On the other hand, many parents of the other adolescents complained about teachers at public high schools who admitted, “they had no time to accommodate for an IEP.” Hence, the data suggested that specialized private school placements were linked with greater academic achievement, more intellectual development, and stronger academic integration than those in public schools.
Most of the adolescents reported that they had a best friend, friends at school, and felt socially comfortable at school. Five reported that they had no trouble making friends; however, four admitted having difficulty keeping friends. Despite this finding, four indicated that they felt like they socially belonged at their school, while three others said they sometimes felt like they belonged. A girl in a small private school observed, “… You either have to get along or you at least have to be civil.” The other girl in a private school found friends who helped her with her homework and to stay out of fights. Another who had just graduated from an American public school remarked, “I’m one of the most popular people. I stand out.” However, another girl felt that other students ignored or shunned her because she had a partial special education placement. One Canadian boy who had been bullied during his previous year in high school commented on his peers,
“Some of them are ok. I can travel upstairs now. Some of them were spreading rumours. I can go into class and not feel afraid.” Another Canadian boy in Grade 12 commented about feeling comfortable in a social sense, “Sometimes. It depends on the kids and the environment. I am comfortable in the special class.”
Most parents indicated that their children had friends at school and felt comfortable with peers at least some of the time. However, they also noted that in some cases, the friends were not the ones they would have liked for their children. Two Canadians appeared to be friendly with two types of groups: “neighbours and athletic boys” and those in the “drug world”. In the case of the boy who was bullied, his mother commented, “His friends change from day to day. But he has 3 solid long-term friends and the druggy group that works. But with the more stable members of the school, they make fun of him, bully him, and are generally obnoxious.” Parents also spoke of their children’s social immaturity and inability to distinguish between friends and acquaintances. The mother of the girl who had just graduated from a private school wrote, “She is very immature! Almost 20 years old but socially approximately 12 years old.” When interviewed she said, [My daughter] has a few [friends], but they have a tendency to use her. They really take advantage of her in a lot of areas.” Another mother commented on her daughter’s social integration, “She thinks they’re friends, but they’re acquaintances. They don’t call her outside of school.”
Although most of these adolescents did not always make the right friends, they felt that having friends was important to them. Not only were they peers to talk to during breaks, but in some cases they also helped them with homework. A participant who had graduated from a private school described her social situation, “…We made this bond where one person is struggling and the rest of the group would help and vice versa. If I was out of the private system, I know that it wouldn’t be like that.” Another girl who attended a school with 4,000 students also commented that her friends helped her with math by explaining it so that she could understand it. On the other hand, an American girl who had just graduated from a public school said, “I don’t ask for help from my friends because I’d rather not get an F on my page! It’s not that they’re stupid, they just don’t want to do it. It’s just how they are.” Therefore, the data showed that the adolescents valued peer relations; however, the assistance provided by peers was not always helpful. So important were friends for some that one girl advised other teens with FASD to “make a lot of friends. Make the best out of school.” Another girl suggested, “Get involved. Try to get integrated. Always be friendly and have a smile on your face.”
Only one of the participants was involved on a school team. This was a Canadian girl who made the school’s girls basketball team in her first year of high school..” Her mother commented, “She [felt] like part of the team and that has really made a difference. … Just to be included. Being a part of the regular system.” Another girl sang in the school choir and a boy was in the D.J. club. Despite the low participation in school activities, all of the parents had ensured that over the years their children had been involved in at least 3 different extracurricular activities, such as soccer, hockey, softball, swimming, therapeutic riding, arts activities, scouting and guiding, gymnastics, skating, and church groups. Hence, from the perspective of involvement in school activities, the data showed that social integration was minimal. However, these adolescents had been involved in activities that their parents had arranged for them outside of school.
Two of the adolescents commented positively on their relations with teachers. The girl who graduated from Foothills Academy spoke warmly of a teacher who helped her achieve a mark of 75% in social studies and of all the teachers at the private school who encouraged her to have higher expectations for herself. The boy who had been bullied also spoke kindly of a resource teacher with whom he had worked in Grade 8 and his mechanics teacher in high school whose class he described as “the best.” A parent commented that her daughter who recently changed schools “does feel socially connected. She hangs around with the teachers.” However, while some of the participants felt a bond with some of their teachers, most of these adolescents were not socially connected to the school through their interactions with teachers.
In summary, for most students the primary method of achieving social integration was through involvement with peers and not interaction with teachers or participation on teams and in clubs. Although they did not always seem to have the “right” friends, some of them eventually found a peer group that accepted them and were not mean to them. In public schools, this outcome was usually achieved through trial and error. However, for the two girls in private schools, getting along with peers was absolutely vital, and they adapted their behaviours to survive socially. As well, parents did not always feel that their children were as socially connected at school as their sons and daughters perceived themselves to be.
Dropping Out of School
Most of the adolescents indicated that they had not considered dropping out of school (5/8). One Canadian boy in Grade 10 said, “No way I’m dropping out. I’m not going to be one of those poor pathetic idiots. You need to work at it. There’s no easy way out. Dropping out ruins your education.” Another boy in Grade 12 commented, “No, I am not planning on dropping out. I want to get it over with now.” Two girls indicated that they had thought about leaving school: one when she was bored at school and the other when she went through a period of depression in Grades 9 and 10. An American girl commented that she sometimes felt like quitting school, particularly when she was having difficulties with her teachers or schoolwork. She said, “When I got frustrated I would still give up, and throw my homework across the room.” However, for this participant, thoughts of dropping out were episodic. Hence, the data demonstrated that while the adolescents may have thought of dropping out at certain times, they generally were committed to persisting with their studies until the completion of their program.
Conditions that inhibited persistence among these adolescents with FASD were related to the school: teachers and the assignments. One 16-year-old complained about her special education classes. She explained, “I’m the kind of person who bores easily if I’m not doing anything. I like to always work. Most of the time special ed. is too easy. … It takes 5 minutes to do the work and then I sit around for 20 minutes waiting for everybody else to finish … When I’m sitting there the teachers aren’t teaching.” Other adolescents were frustrated by the difficulties they experienced completing assignments. Parents commented that the school presented barriers as well. One American mother of an 18-year-old boy wrote, “He had an IEP in school, but we had to fight to have his teachers follow it.” Another American parent furthered, “Most of his teachers did not understand his special needs, which was very frustrating to us as well as to them. [My son] has basically been warehoused to get him through school.” Other parents spoke of teachers who were not informed about FASD and did not believe their children could not do the work because there was no physical evidence of a disability. One Canadian mother stated, “Teachers could have done more to facilitate her acceptance by other students in elementary school and high school.” Hence, conditions related to appropriate programming and teachers who either did not implement the accommodations outlined in the IEP or were uninformed and unsympathetic towards those with FASD inhibited academic integration.
Two conditions that emerged from the data as strongly contributing to persistence were the opportunity to interact with peers at school and unwavering parental support. Three adolescents reported that they persisted in school because of their friends. One Canadian girl stated that her friends “helped me with my homework when I needed it. They made me do my homework so I didn’t get homework strikes.” Her suggestion to other teens with FASD was to “hang around the right people, I guess, and they’ll help you through it.”
Although friendships were important, parental support was the critical condition contributing to persistence. Five of the adolescents stated that their parents were the reason they were still in school. Parents helped them with the academic demands of school. One girl wrote, “My parents have helped me with homework/projects broken down for me so its easier (it really helps).” Another stated that his mother home schooled him and taught him to read. The adolescents also recognized that their parents provided emotional support for them. A girl in Grade 11 stated that her parents helped her stay in school by “telling me I can do it.” An American girl stated that her parents have “been there for me 100%.” These adolescents also recognized that their parents advocated for them. A participant in a special education class stated, “They fought the schools to get me into classes I like. …They have explained to teachers what I need and what I don’t need.” Therefore, parents provided academic and emotional support for their children. They also acted as vigilant and tireless advocates.
Seven of the parents identified their own actions as the reason for persistence; however, all of the parents provided emotional and active support for their children. It appeared that having their children graduate from high school became a priority for these parents. A Canadian mother said, “I focused on [my daughter] getting that high school diploma.” With this goal in place, many of the parents stated that quitting high school was simply not an option, and their children knew their expectations. One American parent wrote, “We have a very strong educational ethic and we’ve said to her she must finish high school and after that it is up to her.” Another parent stated, “We did not give him the option to even consider it. Nobody has given up on him. After all of these years advocating for him, the attitude in the household was ‘There is no way you are quitting now.’”
Some parents wanted their adolescents to graduate because they felt it would enhance their future prospects. One mother said to her daughter, “If you don’t get that high school graduation you have slammed a major door in your face because people are not going to understand your disabilities. They’re going to look for that piece of paper. I knew it was within her reach with supports/services/interventions in place.” Their children accepted this reasoning. Another participant who had been told similar things by his parents commented on the goal of graduating, “The feeling that I am completing something important and making a future for myself and a family. Plus to make my parents proud of me.” Hence, parents provided much emotional support for their children through stating their expectations and offering moral support, which usually manifested itself in adolescents who were motivated to persist.
Parents also provided much academic support for their children in the form of assisting with homework, ensuring that there was a quiet place to work, and in some cases home schooling their children. Three mothers had home schooled their children at various times in their educational careers. This type of schooling was done because their children were clearly not doing well academically or socially, and there were no other schools in the area. Hence, home schooling was viewed as a process of removing the child from a negative situation, providing intensive academic support in the basics, and having the children return with better developed skills, more credits, and/or improved self-confidence. For the most part, this strategy was successful: one boy learned how to read and a girl earned her Grade 10 credit in English.
Parents provided emotional and academic support; however, their most important task was to advocate for their children. Parents seemed to be engaged in a constant battle with agencies for an accurate diagnosis and with schools for programs and services that met the needs of their children. A parent of a senior in high school said, “We fought for 12 years with the school district to get him an assessment; they did not want to assess him.” Parents also spent much time at the schools advocating for accommodations. When there were other schools in the area or when the schools refused to implement sufficient accommodations, parents searched for other providers. One parent stated, “I interviewed 14 different school districts before we moved. … Many of the school districts that I interviewed had this attitude that I was a high maintenance mother, so let’s get rid of her.” Others monitored the fit between their children’s needs and the programs offered on a regular basis and either had the program modified or found other schools that would better suit the emerging needs. One parent said, “Last year she was frustrated. … It prompted me to put her into an extra integrated class.” Others sought different placements to achieve the same goal. A mother commented, “We’d gone private school, public school, home school, tiny school, and regular high school.” For the most part, the parents felt that their efforts had been met with success. A parent stated, “I advocated for an assessment and modifications for him to be successful at school and graduate.” Another commented, “He would not have gotten through school without these accommodations and without us as parents advocating for him.”
In summary, the conditions that inhibited persistence affected the academic integration of the students with FASD. Teachers who did not make appropriate accommodations that would either provide more challenging work or ensure understanding so that assignments could be done independently. Becoming more knowledgeable and implementing the IEP were steps suggested by parents to overcome these barriers. The two conditions that facilitated persistence related to social and academic integration. The adolescent participants perceived that their social interactions were sufficiently strong to keep them at school. Some also commented that their friends helped them with their work, which may strengthen their academic integration as well. However, the strongest predictor of persistence was the parents who advocated for a diagnosis, monitored the fit between the program and their child’s needs, and if necessary advocated for changes at the present school or found alternate programs that provided a more appropriate program. Parents also provided educational and emotional support at home, which strengthened their child’s academic integration and resolve to graduate.
The themes emerging from the findings and a model of parent involvement in school persistence will be discussed in this section. There were a total of 16 Canadians and 8 Americans who participated in this study, and the data revealed few differences between the educational experiences of parents and adolescents in the two countries. In sum, parents in Canada and the United States advocated for an accurate diagnosis, unless their child had one at the time of adoption. On both sides of the border, parents also commented on the lack of knowledge about FASD among “experts.” All of the children in this study had been in at least three different placements throughout their schooling. Parents appeared to change placements when current ones no longer met their child’s needs. The preferred placement was one in which there were few students, there was a knowledgeable and empathetic teacher, accommodations that were implemented, and course content that met the needs of the child. Despite legislation in both countries that schools are to provide transition programs, parents were the ones who arranged such programs for their adolescents, as this did not appear to be a priority for most schools. However, Americans seemed to have more options in regard to transition programs than Canadians.
Although segregated special education classes met most of the above criteria for a preferred placement, they did not always provide appropriate course content for students with FASD. These special classes were for students with developmental disability or multiple disabilities, and at times the curriculum did not mesh with the needs of the child. What is disturbing is that even the special education teachers did not make adjustments to the content or expectations to meet the needs of their students. The best placement for students with FASD appeared to be private schools for those with learning disabilities. Two Canadian girls attended these types of private special education schools for their secondary education. These placements met the above criteria and the adolescents were happy, advancing academically, and motivated. The only concern for one set of parents was the cost of tuition: $8,000 per year. However, placement in this type of school freed the parents from the stress of advocating for accommodations, the social rejection of their children, and hours of nightly tutoring.
Tinto’s (1975, 1997) model partially explained the persistence of these adolescents and young adults with FASD. For these students, background characteristics provided a stronger explanation for persistence than academic or social integration. With regard to background characteristics, the students had learning and social deficits due to FASD that affected their academic achievement and readiness for the content of secondary level courses and social integration. Although the students wanted to obtain a certificate or diploma, their resolve to do this appeared to be affected by their ability to do the work and the grades they achieved. Within their family situation, their parents were very goal-driven and advocated for programs and accommodations that would enable their children to succeed academically. Streissguth (1997) reported that the school should advocate on behalf of students with FASD; however, parents in this research reported no advocacy on the part of teachers for their children. Hence, they took up the cause with vigour. Parents also provided emotional and educational support for their children at home. These actions strengthened the academic integration of the children who became frustrated and discouraged when they experienced difficulties in school. Moreover, their clear expectations for graduation provided a focus for their children and their strong support bolstered their resolve to persist in school. The adolescents perceived that they were socially connected with their peers; however, parents disagreed. They felt that their children’s “friends” were acquaintances and that their children did not have an accurate perception of the quality of the relationships and extent of social integration with peers. The adolescents’ involvement in social activities at the school was minimal and few had positive interactions with teachers. Hence, the strongest predictor of persistence for these students with FASD was background characteristics, and specifically the parents who influenced academic integration and to a lesser extent social integration.
As robust support for Tinto’s model of student integration was not found for this student population, another framework that emphasized the central role of parents in the phenomena of persistence among high school students with FASD was needed. Emerging from the findings is a model that shows the role of parents in encouraging persistence in high school among their children with FASD (see Figure 1). It demonstrates how parents influence the situation at home by providing encouragement, academic support, and clear expectations. If possible, they also obtain a diagnosis privately and seek information about programs for them. The goal-driven behaviours of the parents are transmitted to their children who adopt the goal of graduation and persist in school.
Figure 1 about here
Outside the home the parents advocate for the schools to provide proper identification of their children, programs, courses, and accommodations. They also educate teachers about FASD and work with them when possible to support the academic progress of their children. At the school three types of environments emerge as important for persistence for students with FASD: academic, physical, and social. The academic environment consists of the programs and courses, as well as the implementation of appropriate accommodations that meet the needs of the students. Students with FASD require a physical learning environment that involves small groups of students and provides them with the opportunity to withdraw from the situation when they are frustrated, agitated, or overwhelmed. The social environment comprises their peers: friends and acquaintances. Although the parents function outside the school, they attempt to influence the academic and physical environments as required to maximize their child’s engagement in school. The school social environment is less easily accessed by parents and hence is less influenced by them.
Further research is required to test this model with other groups of children and young adults with FASD as well as those with other disabilities, such as autism spectrum disorder or traumatic brain injury. There is also a need for more research on the types of advocacy in which the parents engage. The findings of this study suggest different types of parent advocacy depending upon the needs of the child and the offerings of the school.
The implications for parents and schools are many. As accurate information is key to making informed decisions, parents need to be familiar with the diagnostic services and educational programs offered by the local schools. However, unlike previous studies that call for schools to provide information about the disability to parents (Kalyanpur & Harry, 1999; Turnbull & Turnbull, 2001), the findings of this research show that it is the parents who must inform themselves about FASD. In this case, the schools played no part in providing information; it was the parents who supplied information to the schools. Parents also need to know that it is their right to advocate for programs and accommodations based on the needs of their children with FASD (Turnbull & Turnbull, 2001). Moreover, parent advocacy is a part of the partnership between home and school, a relationship that is related to student success in school (Dauber & Epstein, 1993; Epstein, 1992; Kalyanpur, Harry, Skrtic, 2000). Although it has been shown that family-professional relationships have no distinctive pattern (Kasahara & Turnbull, 2005), many parents reported that relations with the public schools were anything but satisfactory. Nevertheless, the findings of this study show that strong advocacy is related to high school graduation among those with FASD. It was also demonstrated that parents of children with FASD should take a life-span approach and assume responsibility for the development of transition plans that will facilitate the achievement of the goals related to adult living.
Based on the findings of this study, suggestions are offered for school personnel. Educators should acknowledge that parents are motivated by love and are doing what they feel is in the best interest of their child (Duquette, Durieux-Smith, Olds, Fitzpatrick, Eriks-Brophy, & Whittingham, 2002). Parents have rights in regard to the delivery of special education services, and teachers are legally required to implement IEPs (Turnbull & Turnbull, 2001). Teachers should also take it upon themselves to become familiar with FASD (Streissguth, 1997) and other hidden disabilities so that they can differentiate willful behaviours from those associated with the condition. Despite the literature that affirms the importance of school/family partnerships (Adelman & Taylor, 1997, McKnight, 1995, Roberts, Rule & Innocenti, 1998), few parents participating in this study felt they had a positive relationship with their schools. It should also be recognized by educators that parents are experts on their child (Duquette & Stodel, in press) and that teachers need to work towards developing positive partnerships with parents (Kalyanpur, et al.). These relationships, based on honesty and respect (Blue-Banning, Summers, Frankland, Nelson, & Beegle, 2004), should engage both partners in the delivery of appropriate programs for students with special needs.
Streissguth (1997) states that of all the community’s institutions, the schools are most advantageously situated to influence the lives of people with FAS/FAE. She recommends that school personnel act as advocates for children with FASD. The parents in this study also recognized that a successful school experience and outcomes could enhance their children’s lives. However, in the face of poor understanding and inaction by the schools, the parents became strong advocates for their children. They ensured that a diagnosis was obtained, information on programs was found, IEPs were developed and followed, and appropriate placements were provided. Therefore it was the parents’ actions that influenced the quality of school programs, which resulted in an important difference in the educational outcomes of their children – persistence versus dropping out.
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Table 1. Characteristics of FASD shown by adolescents/young adults
Element Description
Learning Poor memory, expressive language problems,
auditory processing disorder, math (time, money),
abstract thinking
ADHD Impulsivity that led to lying, stealing, sexual
promiscuity; hyperactivity; distractibility; problems
organizing
Physical Small head, FAS facial features, small stature,
organ problems (ears, heart, bladder, kidney), insensitivity to pain and cold
Other Did not learn from consequences or mistakes,
social skills level is below chronological age,
low frustration tolerance level, compulsive,
obsessive
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