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Students with Neurological Disabilities 1
Running Head: STUDENTS WITH NEUROLOGICAL DISABILITIES
Transitions for Students with Neurological Disabilities
Heather Eidson
University of South Carolina
Dr. Barbara Tobolowsky
American College Student
December 8, 2006
Students with Neurological Disabilities 2
Transitions for Students with Neurological Disabilities
Over the past decade the number of students with disabilities on campus,
especially those with a learning disability, has increased (Gardner, 2001). These
disabilities range from hearing and speech problems to neurological and learning
problems. As these students make their way to college and university campuses, they are
challenging the schools to provide proper services. Colleges have made great strides to
provide opportunities to students with learning disabilities to further themselves
academically and independently. There is much research on the needs of these students
and the transitions they must make from high school and college, even out into the work
force. Many other less common disabilities have been overlooked, either because the
needs and transition of the student are not fully understood or there is not sufficient staff
with the necessary training to assist the student (Tinklin, Riddel, & Wilson; 2005).
Students with a neurological disorder (e.g. cerebral palsy, epilepsy, traumatic
head injury) are one group on which higher education has not conducted a lot of research.
These students are intriguing because they can have difficulties with learning, social
behavior, and other impairments that are associated with other disabilities due to their
disorders and how complex the brain can be (Gardner, 2001). These students face the
same transitions from high school to college that non-disabled students do; however, due
to the complications of their neurological disability, they may encounter more roadblocks
and difficulties along the way. According to Gardner (2001) students with brain injuries
or other neurological disabilities have “different needs than students with LD [learning
disability] or other types of disabilities” (p.5). While some of their problems may
correlate to other disabilities, they still have the unpredictability of their brain functions
Students with Neurological Disabilities 3
Studying these students allows higher education administrators the opportunity to explore
students with unique needs and to assess their own institutions. It also allows higher
educators, especially those in student disability services, to understand these students
who receive little attention. They will also be able to help those students and to make
connections between them and other students with disabilities. This will also provide
understanding into the complication of their transition. This study is an opportunity to
evaluate students at the University of South Carolina that have various neurological
disabilities, to investigate how their transition is different, to explore the support,
strategy, self, and situation according to Schlossberg’s 4 S’s, and to apply this to further
the opportunities for these students.
Literature Review
As indicated initially, students with neurological disabilities have not been
researched much nor has their transition in life been investigated very thoroughly. What
has been fully researched is that of learning disability students or students with
disabilities in general. Nevertheless, it is possible to find correlation between what has
been found for students with neurological disabilities and the general research on
disabilities.
Madaus (2005) reported that the passing of Section 504 of the Rehabilitation Act
of 1973 and the Americans Disability Act of 1990 has helped to create equal access for
qualified students with disabilities. Due to these acts, students have been provided with
better access to services, their transition to college is still more difficult than those of
their counterparts without disabilities. Feldman and Messerli (1995) found that the
students who succeeded in this transition had a “sense of confidence and
Students with Neurological Disabilities 4
accomplishment” and that the transition to college had begun early (p. 154). It was also
reported that these students with disabilities felt that they had significant support and
guidance from their families and school administrators, which enabled them to move
through the difficult transition (Feldman et al., 1995).
Part of the transition, according to Quick, Lehman, and Deniston (2003), is
obtaining those self-advocacy skills so that they can educate themselves, the community
around them, and then to understand their own abilities and inabilities. For instance, a
student with a learning disability will need different attention than those students with
other disabilities. Purcell (1996) found that people have a hard time understand a
disability that they cannot see, as in the case of a learning disability, but that the afflicted
must be able to formally communicate this disability. Purcell (1996) also noticed that
students with learning disabilities have troubles that affect their “self esteem, vocation,
socialization, and daily living activities” (p. 39).
While all students with learning disabilities may encounter these issues, students
with a neurological disability have the added challenge of fluctuating symptoms, learning
difficulties that cannot be fully expressed, and the fact that this type of disability is new
to many staff on campuses. When comparing the student with a neurological disability to
that of a student with a learning disability, Gardner (2001) found that there are many
similarities in how they learn, but he realized that a student with a neurological disability
has a harder transition due to the disability and other day-to-day fluctuations. This can be
difficult for students with neurological disabilities as their disorders can be
misunderstood by the university. Many schools are not fully equipped to handle the
peculiarities that these students often encounter. The student with neurological
Students with Neurological Disabilities 5
disabilities is particularly important to higher education in two ways. First, the severity
and constant change of symptoms compounds the regular transition from high school to
college. Secondly, students with disabilities can also benefit from their experience in
secondary education. As Gardner (2001) discovered, higher education “offer[s]
significant opportunities for cognitive stimulation and age-appropriate socializing” that
enables a student to transition into the college environment (p.6).
Theory
This research study focuses on the transition of students with neurological
disabilities by applying Schlossberg’s Transition Theory to their experiences.
Schlossberg (1995) defines a transition “as any event, or non-event, which results in
changed relationships, routines, assumptions and roles” (Evans, Forney, DiBrito, 1998,
p.111). While every student will experience a transition, or many, in their college years,
each student will approach it differently. To better understand a student’s transition and
the meaning it has to the students, an examination of the type, context and impact of the
transition is in order (Schlossberg, 1995). In this manner, type refers to one of three
transitions - anticipated, unanticipated or nonevent; context refers to the relationship to
the transition and the environment in which it occurs; and impact is how much the
transition affects a person’s life. These factors all contribute to a person’s reaction to a
transition.
Schlossberg et al. identified the 4 S’s - situation, self, support, and strategies - to
help further understand how a person copes with the process of a transition. Situation
examines the individual situation and what caused it to occur. Self focuses on two
categories of characteristics, one of personal and demographic characteristics; “how an
Students with Neurological Disabilities 6
individual views life” (Evans, 1998, p. 113) and that of psychological resources; coping
aids. Types, function, and measurement define support and how it aids an individual
with coping. Pearling and Schooler (1978) found that strategies fall into three areas:
“those that modify the situation, those that control the meaning of the problem, and those
that aid in managing the stress in the aftermath” (Evans, 1998, p. 114). With the aid of
Schlossberg’s 4 S’s, this study hopes to better understand the transition of students with
neurological disabilities from high school to college.
Method
The students in this study were selected through the help of an administrator in
the Student Disabilities Services at the University of South Carolina. The students
participated in individual interviews that lasted thirty to forty-five minutes. The
interviews focused on questions that explored the student’s transition by analyzing and
applying Schlossberg’s 4 S’s.
Three students that have a neurological disability were selected. All are residents
of Columbia, SC and have been for a majority of their life. The three students all
developed their individual disabilities later in life, whether as a result of an accident or as
a sudden development of symptoms. It is important to note that all three of these students
missed a small portion of their high school career as a result of the disability.
Lynne* is a senior majoring in philosophy. Her entire family, three sisters
included, all live in Columbia, which is part of the reason that she attends USC. She has
an acquired brain injury that affects mainly her memory. She acquired the injury the
summer after her junior year when the car she was driving was hit by a young man’s car
that ran a stop sign.
Students with Neurological Disabilities 7
The second student, James*, is a sociology major. He is currently in his fourth
year at USC. He has hemiplegia, which caused constant seizures and as a result, had the
right side of his brain removed when he was eleven years old. He mainly experiences
difficulty moving the left side of his body, loss of peripheral vision and some learning
difficulties.
Anne* is a senior studying English at the University of South Carolina. Her
family is from Irmo, SC. Unlike the other two students interviewed, she is very active on
campus and has started a group that focuses on students with epilepsy. Her seizures
started when she was thirteen years old and progressively got worse as she aged.
Currently, she is experiencing what she describes as “secondarily generalized partial”
seizures where she is conscious of what is happening, but cannot control it.
* Name changed to protect the students’ identity.
Findings
All of these students experienced a transition from high school to college that was
altered by the added complication of a disability. What is extraordinary are the
similarities these students have to those of students with no evident disability. They all
experienced homesickness and a newfound feeling of freedom like many traditional
students; however, the main areas on which they all focused were their extreme
determination to prove that they could succeed, strong support, the original transition that
stemmed from the disability, the benefit of coming to college, family importance,
limitations and in one case the timing of the event.
Determination
Knowing that Anne, Lynne and James had all faced difficulties in their studies
while in high school due to extended absences and problems with memory loss, they all
Students with Neurological Disabilities 8
felt a strong push to succeed in college. In some cases, such as in Lynne’s, they would
push themselves harder than other students to ensure that they did pass the class and
show that they could do it. As Lynne said,
Knowing that I had this disability made me more aware of the fact, so I
would overdo; like, I’ve only missed two classes since I have been here.
In college you are just a number and so by going to class and doing the
work and setting yourself apart, maybe you aren’t the smartest person in
the class, but somebody who is willing to put in the work and isn’t slack
and lazy shows the professor you are willing to work. …it’s due to the
disability.
This determination extends even further than academics for these students. James
and Anne both realized that to make it over this transition and to continue to better
themselves, they had to push through. As Anne said, “Don’t worry about it…just shake it
off.” As this transition continued and other obstacles came along, the three students all
mentioned that they felt they had to succeed and that they had to stay on top of their work
or other areas in their life. In James’ case, he feels that he just realized he “had to deal
with it.” To him it was just like, “somehow a switch got turned. I realized I just had to
do it.” For these three students, “it” became their college career and their pursuit of
goals, similar to that of any college student.
Support
Another area that all three students mentioned during the interviews was that of
support, whether it came from their families, friends or school officials. This support
truly helped these students to overcome the added obstacles of their transition to college.
Students with Neurological Disabilities 9
For Anne, the welcomed support of her two best friends in high school helped to prepare
her for college: “I had two very close friends that I haven’t seen in years, but umm, they
were very sweet to me. I actually remember Merna, I have memories of coming to after a
little seizure and her being there holding me and rubbing my head.” This support helped
Anne to overcome the initial transition of becoming a student with a disability, and such
support has strengthened her to continue her education even up to the hopeful level of a
graduate degree.
Support from family also played a big role in all of the students’ transitions.
Anne contributed that because her family is so close and so supportive, she felt more
encouraged to attend college and live on campus. The support of Anne’s family “really
helped me through it.” James also described the support of his family and how they
rallied behind him as a significant reason why he felt he could continue.
I had a very supportive family and I had one administrator [in high school]
that made it his job to get me out in four years. He made sure, first off the
guidance department at my school sucked. He made sure that I got the
courses I needed to, when I needed tutors he provided them and he held
my feet to the fire.
To James, the support of a high school administrator was important, but when asked if he
had that kind of support at the University of South Carolina, James indicated that he did
not. This is partially due to the fact that he did not need many of the services they offered
him. However, he still has the support of his family and friends. All three of the students
agree that while the university does provide numerous services that they can take
Students with Neurological Disabilities 10
advantage of, such as the opportunity to register early and to take a smaller number of
classes, they feel that it is not a support structure they can lean on.
Another surprising finding was that Anne developed her own support structure by
creating the Epilepsy Association on campus, a group of students who meet to support
and discuss issues involving epilepsy. “It’s more of a support group, advocacy group.
We have speakers come in. It’s really just a good way for people to come in and talk
about what’s going on.” For Anne, building a support group with those similar to her
helped her to better understand her disability and to cope with the changes it has made in
her life.
Other Transitions
Not only did all three of the students have to face the transition to college, but
they also had to face how their lives had changed in their early high school and middle
school years. For them, this helped them to better understand and cope with transitioning
to college life.
Anne not only had to handle transitioning to a life with a disability, she also had
to adjust to the change in the type of seizures while she was in high school. “I hated
eleventh grade, it was just bad. I had a teacher that year that was just really bad and was
just very mean to me.” Part of this was due to the ever changing seizures. Anne would
go from a day or so with out any to a day with several absences or grand mal seizures.
During this time, she was constantly going from a full-time student to a homebound
student and back. After having four grand mal seizures in one day, they simply just
stopped. Anne then had to readjust to a life without severe seizures to one where she was
having many smaller scale episodes throughout a day. This aided her and James, who
Students with Neurological Disabilities 11
went through a similar transition in middle school, to better understand their role change
and to better handle the transition to college as they already had experience with a similar
situation.
Benefit
While these students faced difficulties in college at times, they all felt as though
they benefited in many ways by coming to college. Gaining autonomy, the ability to do
one’s own laundry, or even to simply make one’s own choices, allowed these students to
explore the changes the transition made to their lives. As James described it, “College is
better, just in freedom. Because you get to pick your courses, I was not good at math.”
This freedom to decide what classes he wanted to take and what time he would study
really allowed him the opportunity to explore his world, and as his college career comes
to a close, he better understands how this transition has shaped him.
For Anne and Lynne, this freedom benefited them in ways typical to a majority of
students. These students gained a sense of independence from their close families. Anne
felt that, “If I hadn’t come to college I’d say or even just living on campus, let’s say I
lived at home, I’d depend on my family and my mom a lot more and would also depend
on my dad to drive me to school everyday.” She went on to say that, “If I hadn’t come to
college, I feel like I would have missed an entire opportunity to learn….and no one
should be deprived of that.”
Limitations
Although these students did not feel like they were that different than other
students on campus, they did mention several limitations that they have due to their
Students with Neurological Disabilities 12
disabilities. These limitations reflected on their transitions in real ways, they made the
situation more difficult and forced them to look upon themselves for a new direction.
For Lynne, not only did her transition to a student with a disability force her to
realize her new found limitations, but also the work load of her classes: “Like I get real
stressed out about tests, like I didn’t use too. And it’s just because I’m not sure and stuff
like multiple choice tests, like memorizing stuff.” For her, the biggest challenge and
limitation was that of her memory. She began to find that she would have to work
“really, really hard.” While in high school, she did not have to work as hard, because
back then, she had “the best memory ever.”
Anne, because of the frequency of her seizures, found that not only was she
limited academically, but also socially and in her daily choices.
I mean, I have to take my medicine at very specific times, three times a
day…and in some ways it even effects what jewelry I wear. I’m even
scared to wear necklaces now, because when I have a seizure I pull at
everything around me and in fact I had a seizure yesterday in English class
and I had to take off my necklace because I knew I was going to pull at
my shirt and everything around my neck.
She even became upset and depressed over these instances, which began to limit her
socially, but she found that over time: “It doesn’t stop me from anything. It doesn’t
cripple me in a sense. I mean yes, I would be happier if they didn’t happen all the time.”
For both her and Lynne, life would be simpler without the limitations presented by their
neurological disabilities, but it also does not hinder them from what they strive to do.
Students with Neurological Disabilities 13
Timing
What is most surprising is Lynne’s own analysis of the timing of her accident.
The car accident in which she was involved took place three days after the start of
summer break between her junior and senior years in high school. For Lynne, while
there is no great time for a horrible accident to occur, it was the perfect timing for the
situation.
I mean, if it had to happen, it was really the perfect time because I had the
whole summer…to get better and then return my senior year. I think that
if that had happened in college, it would not have worked out because I
didn’t have the kinda cushion room. Because I did homebound for a
semester…and then my second semester I had great teachers. So it was
kinda a way, not to find myself again, but to just kinda become the person
I was going to be while I was in college. It was nice to have that cushion
year to get myself together. If that had happened in college, I don’t think
that I would be where I am today and I don’t think I would have healed in
the way I have. I needed it to happen in high school so it wouldn’t be that
hard. But if it had happened after my sophomore year [of high school]
and I had gone right into my junior year, I don’t think I could have done it.
Classes were so hard and so much memory.”
Lynne’s positive attitude about her accident was reoccurring amongst the three students;
however, she was the only one who realized that had her transition had allowed her to
reach this point in her life.
Students with Neurological Disabilities 14
Analysis
Throughout these interviews, several notions become apparent for each student.
None of them felt that they were truly that different, nor did they feel that their transition
was any harder than those of traditional students. For all of these students, the change in
role from a “normal” student to a student with a disability altered how they perceived
their transition to college, and the support of family or other units helped them to better
cope with the transition. These students also found ways of coping by developing their
own strategies.
Students with disabilities often find themselves in situations that make the
transition to college much harder (Bordwick, 1996). For many students, this can become
a negative experience and discourage the students from approaching this transition.
However, in the case of Anne, Lynne and James, these students found the situation to be
positive. Lynne especially chose to view her transition, both into a student with a
disability and a college student, in a manner of timing. Schlossberg’s Transition Theory
finds that the timing of a transition can be just as important as other factors in a person’s
life, and that whether it occurs at a ‘good’ or ‘bad’ time can affect the reaction to the
transition (Evans, Forney, DiBrito, 1995). Since these students all found something
positive in their transition to college despite their disability, future transitions should be
easier to handle and the student will be better able to understand how they react.
In regards to self, all of the students interviewed possessed a strong determination
to forge ahead during this transition. James, Anne and Lynne all had to possess some
personality characteristics and “psychological resources” to pursue this. However, James
and Lynne will never fully be able to experience college because both find that they do
Students with Neurological Disabilities 15
not have the ability to relate to their peers and as such, have few friends beyond those
they had in high school. All of these attributes allow a better understanding of the
student through Schlossberg’s factor of self, “how a person views life” and how this aids
in their coping (Evans, 1995, p. 113). For Anne her willingness and openness to others
aided with her coping due to the fact that she was willing to share her experiences with
others through the Epilepsy Alliance.
Support, whether through family, friends or institutional support, can either ease
the transition or hinder it. Schlossberg et al. (1995) placed significant importance on the
type, function and measurement of support given by these groups. All three students
placed an important emphasis on how much support they received from their families.
Since all three had family in the immediate area, they knew that if something was to
happen to them, their family would immediately be there. These localized support
systems also invigorated them to try to make this transition by pushing them to move out
of the house and establish their own identity outside of the home. For Anne, she also had
the support of the Epilepsy Alliance that gave gratification in knowing that she was not
the only one suffering. However, as found in Tinklin, Riddel and Wilson (2005),
“Significant gaps between policy and practice showed that a significant barrier remains to
the participation of disabled students’ and these further leads to a lack of support by the
university (p. 496). Lynne, Anne and James felt no further support from the university
beyond the classroom provisions that had been made for them. This supports the findings
of Tinklin et al.
The final contribution factor in Schlossberg’s Transition Theory (1995) is that of
strategies. A strategy assesses a person’s ways of coping. To cope, a person can modify
Students with Neurological Disabilities 16
the situation, control the situation or manage the stress of it; each student chose their own
way of coping. For Anne, assimilating into a group of her peers and relating her feelings
on the transition to college helped her to cope with the situation and to feel like she had
more support within the school environment. In Lynne’s case, her need to control her
education and to seek out ways that she could learn led her to realize a newfound passion
in philosophy that better suited her new way of thinking. James, however, chose to
manage the situation and the stress of the transition by taking action to prepare him for
college while in high school by accepting the challenge of his high school administrator.
In all of these cases, the students forced themselves to handle the transition to college and
not allow it to impede the progress that they wanted to make.
Recommendations
Significant research has been done on the transition of students with learning
disabilities, leaving us much to learn about students with neurological disabilities.
Tinklin (2005) and Gardner (2001) both recommend that further investigation needs to be
made into the plight of these students. Further investigation to better understand how
these students have adapted to a new environment and what provisions they need is
recommended.
In the study done by Glimps and Davis (1996), they found that many students
with disabilities are “frustrat[ed] with colleges which fail to provide appropriate
accommodations or to encourage and develop student potential…” (p. 31). They suggest
that talking to the students about what services and supports they need would create a
better environment for the students. Glimps (1996) recommends an analysis of student
programs focusing on “individualized welcoming, community building, building
Students with Neurological Disabilities 17
leadership skills for self-advocacy and activism, and student-centered learning
approaches” to better help these students (p. 30). Schlossberg (1995) notes that for a
transition to be successful, a person must feel and be able to measure the “individual’s
stable supports…” (Evans, p. 114). For the University of South Carolina, talking to the
students to find what accommodations and support they need will greatly benefit the
campus and the students on it; however, it is also important that research or focus groups
be conducted on multiple campuses to better understand the broad range of
accommodations.
The ability to cope by adapting strategies to the situation is also a major
component of Schlossberg’s Transition Theory. A program that would allow students to
access what they needed and then modify the situation accordingly would give
neurologically disabled students the opportunity to adjust to their settings. Accordingly,
Bordewick (1996) found in her analysis of Capilano College that approaching the
students with a “safety net for success,” strategies and accommodations designed for
students with disabilities, during their first year on campus aided in the retention of the
students. Bordewick (1996) also found that allowing “students with disabilities to review
their ongoing educational needs and to make sure that their support systems and
classroom accommodations were in place,” gave such students the opportunity to mature
and move to new horizons (p. 55-56). This is a major component of Schlossberg’s
Transition Theory. Recommending such a situation to many universities, especially when
focused upon students with neurological disabilities, would allow a greater understanding
and support system for students.
Students with Neurological Disabilities 18
Conclusion
Students with disabilities in general face many difficulties with their transition to
college. However, those students with neurological disabilities face a more difficult road
than most students, even when compared with other disabilities. These students are often
classified with learning disabilities and treated to the same support and programs as
learning disability students. Students with neurological problems not only face the
transition into a university setting, they also have to deal with the possibility of their brain
transitioning. With the aid of programs designed to help students with neurological
disabilities better navigate the changes their body and minds go through, student affairs
administrators can better understand and help these students.
Students with Neurological Disabilities 19
REFERENCES
Bordewick, J. (1996) A Safety Net for Success: An Approach to Transition Planning. In
L. Walling (Ed.) Hidden Abilities in Higher Education: New College Students
with Disabilities (ppg.55-61). Columbia, SC: National Resource Center for the
Freshman Year Experience and Students in Transition.
Evans, N., Forney, D., & Guido-DiBrito. (1998). Student Development in College:
Theory, Research, and Practice. San Francisco, CA: Jossey-Bass Inc. Retrieved
on September 26, 2006 from EBSCO Host.
Feldmann, E., Messerli C. (1995).Successful Transition: The Student's Perspective.
Reaching to the Future: Boldly Facing Challenges in Rural Communities.
Conference Proceedings of the American Council on Rural Special Education.
151-158. Retrieved on September 26, 2006 from EBSCO Host.
Gardner, D. (2001).The Student with a Brain Injury: Achieving Goals for Higher
Education. HEATH Resource Center. Spring, 1-16.
Glimps, B, Davis, K. (1996) Multiple Stigma or Multiple Opportunity? New Students
with Disabilities from Diverse Cultural Backgrounds. In L. Walling (Ed.) Hidden
Abilities in Higher Education: New College Students with Disabilities (ppg.29-
37). Columbia, SC: National Resource Center for the Freshman Year Experience
and Students in Transition.
Madaus, J. (2005).Navigating the College Transition Maze: A Guide for Students with
Learning Disabilities. TEACHING Exceptional Children. 37, 32-37. Retrieved on
September 26, 2006 from EBSCO Host.
Students with Neurological Disabilities 20
Purcell, M. (1996) Students with Learning Disabilities and the Social Domain. In L.
Walling (Ed.) Hidden Abilities in Higher Education: New College Students with
Disabilities (ppg.39-46). Columbia, SC: National Resource Center for the
Freshman Year Experience and Students in Transition.
Quick, D., Lehmann, J., & Deniston, T. (2003).Opening Door for Students with
Disabilities on Community College Campuses: What Have We Learned? What
Do We Still Need to Know?. Community College Journal of Research and
Practice. 27, 815-827. Retrieved on September 26, 2006 from EBSCO Host.
Tinklin, T., Riddel, S., & Wilson, A. (2005).Support for Students with Mental Health
Difficulties in Higher Education: The Students' Perspective. British Journal of
Guidance and Counseling. 33, 495-512. Retrieved on September 26, 2006 from
EBSCO Host.
Students with Neurological Disabilities 21
INTERVIEW QUESTIONS
1. Where are you from?
2. What form of disability do you have?
a. How does if affect your daily life?
3. Why did you choose USC?
a. Expectations of the school
b. Were they met?
c. Why or why not?
4. Tell me about your transition from high school to college in regards to your
disability (or in one students case your transition from before the accident to after
the accident while in college).
a. Challenges
b. What did you do to make the transition easier?
c. How did you cope?
d. Who supported your decision to attend college and have you been
supported by the school?
e. What programs/events/offices have helped you on campus? (especially the
disability services)
f. How has coming to college benefited you in regards to your disability? If
you had to do it over would you still decide that this is the best decision
for you?
5. Do you feel that you have control of you disability?
a. What are the challenges with it in regards to you college career
Students with Neurological Disabilities 22
b. How did you cope during high school or before your accident?
6. Is there anything else you would like to tell me about your experience?