University student with CMT offers advice on college accommodations

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Back-to-School: What it Means When You're in a Wheelchair

By Janelle LoBello

http://www.healthnewsdigest.com/news/Guest_Columnist_710/Back-to-School_What_it_\

Means_When_You_re_in_a_Wheelchair.shtml

Back-to-school supplies include books, pencils, new clothes and for some,

wheelchairs. Here are some insights from professionals, parents, and students of

all ages who will be hearing the school bell ring this coming fall.

K - 8th grade adjustments

The implicit assumption would be that everyone would make a student's experience

in school as easy and comfortable as possible. In order to ensure that happens,

Pitts, mother of nine-year-old twin boys, and , ( was born

a quadriplegic,) emphasizes communication. " Set up a full team meeting in the

classroom, " suggests Pitts, " with the parents, teacher, principle, nurse, and

student. The communication is key to make sure everything is set up ahead of

time. "

" Have one person you feel comfortable with, " says Pitts, " whether it be the

nurse, a teacher, or a guidance counselor. That can be your go-to person;

someone responsible for coordination. "

In addition to a meeting before the school year begins, Pitts also suggests a

meeting at the end of the school year to discuss and prepare the following year.

Soon-to-be third grader, Pitts

Aside from communication between authorities and parents, communication within

the classroom is also important. " We have and in different classes, "

says Pitts. " We split them more so for than , so doesn't have to

feel responsible for . We also don't want to depend on . We're

trying to make as independent as possible. He knows if he needs help to

ask. "

Transportation to and from school for students in wheelchairs is a decision

parents have to make. Is it easier for the student to take a bus or be driven by

the parent? The school in Pennsylvania, in which Pitts' sons attend, is

responsible for bussing. " is picked up, and someone meets him outside

school when he gets there, and helps him pack up at the end of the day, "

explains Pitts.

In order to ease the experience in the classroom, Pitts recommends buying

functional school supplies. " Any pencils, markers, erasers, scissors that have a

bigger grip work well, " explains Pitts. " Or even the spongey grips for a pencil.

I take with me so he can try the things out before we buy them. "

Antonia Sinibaldi will be entering the 6th grade come fall 2009

Antonia Sinibaldi, age 12, entering 6th grade in northern New Jersey, is

" excited for school to start, but angry I can't sleep late anymore. " says

Sinibaldi, 12. Sinibaldi, who suffered a C2 – C5 spinal cord injury in a car

accident when she was 2, was absent only once from school in 5th grade. She

considers herself to be a " normal preteen girl " and says teachers shouldn't

worry about her wheelchair. " Do your normal boring teacher stuff, " laughs

Sinibaldi, whose favorite subjects are music, science, and French. " I just go

with the flow and chillax! "

Arielle Rausin – Rolling into her sophomore year

Transitioning into high school comes with unknown questions and answers for

everyone. Krista Rausin, mother of Arielle, who suffered a T11 spinal cord

injury in a car accident at 10-years-old, describes it as a challenge. " No one

knows her history, " says Rausin. " They are all wondering why she's in the chair.

She goes through a transition time where kids and teachers eventually see her

and not the wheelchair. "

" I've made a joke out of it by coming up with some exciting and elaborate story

about how I broke my spinal cord, " laughs Arielle, entering her sophomore of

high school in Florida. " Rather than just a boring car crash, I've said ski

accidents, or attacked by a bear on a camping trip. It's crazy what people will

believe. "

Arielle Rausin at Homecoming.

For Arielle, going to school in a wheelchair isn't much different than prior to

her injury. " There are certainly more challenges, " says Arielle, " like reaching

for trays and silverware in the lunch line. Or finding time to go to the

bathroom in between classes, or just getting to class on time! I go to a big

school with only one elevator. "

Arielle doesn't let her wheelchair stop her from being active. " I am involved in

track, which I love, " explains Arielle. " And this year, I am in marching band.

The wheelchair gives me a unique edge when I have to audition or try out for

anything. The downside is sometimes people are afraid of change. So they will

not let me participate in certain activities. "

Often times, Arielle's wheelchair is a helpful conversation starter. " They see

me do a wheelie, for example, and think its cool, " says Arielle. " They want to

know how I do it. Or sometimes, if I'm going up a hill, a complete stranger will

give me a little push to the top. A friendship begins from that. "

" I just try to make the best of it, " says Arielle. " And be like everyone else in

high school. I just go with the flow. I'm always more excited than scared to

start a new class. "

Mackenzie Clare with her parents on vacation

Mackenzie Clare – Fresh start in freshman year

When Mackenzie Clare, now 14, was injured in a car accident in April 2005, she

spent almost 3 months in the hospital. In order to finish 4th grade, teachers

would come to the hospital and her home during the summer after Mackenzie was

released.

" When I went into 5th grade, all of my classmates had known me before I was in a

wheelchair, " explains Clare. " So they treated me the same. I didn't have to

explain what had happened and why. "

The Clare family moved into a more accessible home after the accident, but it

was outside their old school district. Mackenzie's mother, , sought and

received special permission from the school districts in Virginia to keep

Mackenzie with her classmates.

" Staying with the same group of kids makes the transition much easier for her, "

says of Mackenzie entering her freshman year at a high school of

approximately 2,200 students in fall 2009.

" For the four years I have been at school in a wheelchair, the teachers and

staff have been wonderful, " says Mackenzie. " They bring in a desk that I can fit

under and they make my locker accessible. The nurses are great with helping me

when I need it, and my teachers have been friendly and accepting of any needs I

might ask for. "

Making her school days a bit easier, Mackenzie has hard copies of all her

textbooks both at home and in school so she doesn't have to constantly carry

them.

Academically, Mackenzie says, " I can't wait to go to college. I would consider

myself smart. I am no brain surgeon, but I have a good memory and am a good

listener. "

College senior, Corey Mineo encourages visiting potential college choices

Big wheelchair on campus

Corey Mineo, a 21-year-old senior psychology major at the University of Colorado

Denver (UC Denver), knows about living a college life in a wheelchair firsthand.

Diagnosed at age one-and-a-half with Muscular Dystrophy and Charcot Marie Tooth,

Mineo urges that preparation is the most important aspect of getting ready for

college.

Before attending UC Denver, Mineo studied at a local college. " I decided to go

to a two- year community college (Colorado Mountain College), " explains Mineo,

" It is much more personal and really helped me to transition. I didn't feel it

was best to go right into a big university. It was a big step, it helped build a

drive to go to the next level. "

Accommodations for students at UC Denver can be made at any time throughout the

year, according to McGill, Director of Disability Resources and Services

(DRS). In order to receive accommodations, the student in need of help must go

through a two-step process. " We interview them first and take a look at their

medical history, " explains McGill, " and then we collaborate and determine how to

give the student a proper and equal education. But it is up to them to do the

work. "

" The university provides assistance with aides, alternate forms of textbooks or

testing procedures, assistive technology, note taking services, and special

furniture.

Living arrangements, if living on campus, can also be arranged to fit the needs

of a student in a wheelchair. " We have integrated residence halls for all

students, " says McGill. " We can modify a room to a person if they are paraplegic

for example. Someone might need a refrigerator where the freezer is on the

bottom instead of the top. " Wheelchair users are active participants in the

process of working with the university to meet their specified living needs.

Mineo encourages not being afraid to ask for help. When moving on campus, the

university was " obligated " to put wooden flooring and other arrangements in

Mineo's dorm. " It was a collaborative process, " says Mineo. " It was as much me

as it was them. "

" The campus itself is accommodating in terms of attitude and accessibility, "

says McGill. " It depends more on the person than the wheelchair. "

Carmen Sutherland of the University of Illinois is a graduate student intern at

the university's Disability Resources and Educational Services. " Planning ahead

for whatever you want to be included in your life is imperative, " explains

Sutherland, born with cerebral palsy, " as is making a conscious decision to

include various activities in your day, such as, academic, extracurricular and

personal activities. This also means that is important to be creative and

flexible on a daily basis. "

From a student's perspective, Sutherland believes living away at school is a

better option than commuting, if possible. " Many students with physical

disabilities get an extra boost in terms of independence, " she says.

An accessible campus

Whether living on campus or commuting, accessibility of the campus is most

important. Shields, director of the Disabled Students' Residence Program

(DSRP) at The University of California at Berkeley, suggests being aware of

anything that might present a challenge. " Make sure you plan for all your needs,

such as attendant care, restroom needs and meal assistance, " says Shields.

" Be prepared for difficulties with professors when you want special

accommodation, " suggests Shields. " Go up to the professor the first day, or

earlier if possible, to explain your disability and come to an agreement of any

accommodations you will need. "

" Visit colleges, " stresses UC Denver's Mineo on the importance of accessibility.

" Get a feel for the people. Don't be afraid to ask questions. Ask what you want,

even is it's weird like, `How do I get my books to class?' Make them show you

everything. " Touring a college and its environment will allow you to see what

will make it work.

Wheelchair users should find the most accessible routes to all of their classes.

Taking a few days before class to learn the routes will " provide the opportunity

to have classes moved if they are not in an accessible location, " says Shields.

" If the school does not have something you need, such as: a ramp, a map of

accessible routes, a disabled students union, or an attendant referral service,

use the school's resources to make one. "

If living away at school, Shield's suggests finding the nearest wheelchair

repair shop within the area. " Call them up or stop by, " explains Shields, " to

find out if they take your insurance and carry your brand of equipment and

parts. "

DSRP students living on campus are housed amongst six buildings with the general

student population. " We do not want the students segregated into a `cripple'

ward, " says Shields.

If commuting to school, transportation has to be arranged. " Contact the

para-transit services in your area, " suggests Shields. Inquire how far you can

be taken, rates, and in which locations on and off campus they are available to

pick you up.

" College is more than a set of classes with a degree waiting at the end of the

tunnel, " says Shields. " Our program levels the academic playing field as much as

possible so that students can use this time of their lives to the fullest. "