running head: students with neurological disabilities · 2011-05-05 · students with neurological...

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


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


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


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


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


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.


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


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.


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


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


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


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.


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.


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


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


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


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.


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.


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.


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.


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


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?

running head: students with neurological disabilities · 2011-05-05 · students with neurological...

Documents