|
Although there are more than a million persons with aphasia in the United States, it is relatively rare that persons in their teens or early 20's acquire aphasia.
The National Aphasia Association Young People's Network was established to help families share information when one of their family members (ages 13-30) acquires aphasia.
See the NAA's list of community groups, such as the Young Stroke Survivor Group, in your area.
Click here to see all community groups for young stroke survivors.
Arlene Kershaw, who lives with her husband, Newton, in Manchester, New Hampshire, provided the momentum for formation of the network after their daughter, Alexis, acquired aphasia as the result of an arterial-venous malformation that hemorrhaged when Alexis was 15 years old, in 1992.
Mrs. Kershaw says, "Adolescents are in the process of finding out who they are - personality-wise, sexually, and vocationally. Their lives are still emerging. We thought that it was terribly important for Alexis to maintain contact with her friends and to participate in daily life at school. It can get very complex arranging for the education of a young person with aphasia," says Mrs. Kershaw. "School systems are already stretched to the limit and time and money are very much at issue in deciding what sort of accommodations can be made." Federal law requires that students with special needs receive an individualized curriculum which is worked out with input from teachers, therapists (if required), the student and the family.
Alexis graduated in May 1999, from Lesley College in Cambridge, Massachusetts Her major was in Human Services and she interned as a Physical Therapist Aide.
2008 UPDATE: After spending 5 years in Boston trying several jobs (and not really finding anything that she could do productively), she moved back to Manchester. Shortly thereafter, she met her husband, Kevin Silvia, and has been married for 5 years. They now have three children: Nicholas, Oriana, and Anika. Alexis is a stay-at-home mom and loves it. She still has the challenges of aphasia and right side weakness, but is a happy, productive person who feels good about her situation.
The Doland family of Washington, DC was suddenly faced with aphasia when their teenaged daughter, Kate, suffered a stroke after a car accident in 1990 at the age of 15. "What I found", said Kate's mother, Molly Doland, "was that most people didn't have a clue what to do with a teenager with aphasia. I could find support for just about anything I could dream up to help Kate. But so few health professionals have any experience whatsoever with teenagers with strokes." Kate is presently in the process of looking for appropriate work; but remarks, "It is very difficult, since I can not read or spell". She hopes to have the opportunity of entering the job market in the near future.
David Dow of Madison, Ohio was only ten (4th grade) when he suffered a massive stroke while on vacation with his family in 1995.
It was discovered that David had a rare genetic vascular disease that would require two brain surgeries for him to survive. The good news is that David continues to improve with intensive services. "It is imperative that students receive intensive services," said David's mother, Carol Dow, "some of David's most significant gains have been years after the stroke."
His mother and stepfather have been strong advocates for David to ensure his educational growth, but Carol adds, "It isn't easyÉ aphasia is something that school staff typically would not have background on. Assumptions made about students are often incorrect. These kids are easily labeled by staff that typically doesn't understand the underpinnings of brain injury and adequate educational strategies.
Teachers often teach to a "one size fits all" and these
kids learn differently, vastly differently. Building teamwork
between the medical and educational support staff is critical."
The Dow family supplemented David's public education with
daily tutoring, computer and art classes. David freelances
as an artist (yes, left handed!) and has done work for Simon
and Schuster, self-published a book about his stroke, designed
stationary for the state of Ohio, and now has his work available
on sweatshirts.
Updated 2005 by Carol Dow-Richards, David’s mother:
“The educational issues with David were quite a challenge,
but we fortunately found a plan that worked out very well.
For three years of high school, David went to a special
boarding school where the staff was well trained in language-based
learning disabilities (www.brehm.org). At the school, he
received intensive speech and language therapy. He returned
home his senior year and graduated from the public school.
(The laws require a "free and appropriate public education"
and we were able to get significant help with finances from
our local school district.) His aphasia was very severe
in his elementary years, yet by graduation, it was barely
noticeable to most people.
Now, he attends community college and works part time at
Abecrombe and Fitch. He hopes to transfer to a university
and eventually get a degree - he tells us he will be 40
when it happens! The college supplies him with a notetaker
at no charge, and we hired a student who is working on her
Master's in SLP to tutor him. The Department of Vocational
Rehabilitation pays for his college tuition, books, and
assistive technology devices. The family is moving to Henderson,
NV soon (near Las Vegas) and David is eagerly searching
out schools to transfer to.
David's advice to young people is to not give up and have
patience. It is a long, slow recovery. My advice to the
parents is to advocate, advocate, advocate on behalf of
your child and get the services in place for an optimal
recovery. It is HARD work, but it must be done. These kids
have a huge chance for improvement, given the right support.
We are the lucky ones-- brains are very capable and continue
growing until about age 30.
Advice given to me by David's doctor was to "stimulate,
stimulate, stimulate!" Meaning, encourage brain recovery
by keeping him challenged and engaged.
I now run a support group for people with aphasia in Madison,
OH. I also developed a company called Aphasia Connection
that serves families dealing with aphasia in a variety of
ways. My email address is aphasiasupport@aol.com
Please put the word ‘aphasia’ in the subject
box as I don't open unknown emails.”
Kris Kirkpatrick of Columbus, Ohio was working out with weights with fellow teammates from his high school football team when he suffered a brain aneurysm and three days later, a stroke.
In 1990, after a two-month coma followed by many more weeks of recovery, Kris was unable to resume the quarterback position he had occupied in his sophomore year. But his teammates actively supported him through his rehabilitation and return to school. Kris' aphasia dictated some considerations in his curriculum, but like the Dolands and the Kershaws, Kris and his family felt that school was too important to miss out on. Kris' mother, Patty Kirkpatrick, says, "The big problem is that medical technology is just now in place to save our children's lives, but the rehabilitation process is not yet fully developed. So the parents and their kids become pioneers in the rehabilitation process. We have to make it up as we go. I hope we can help parents of other young people who acquire aphasia."
Recently, Kris has been working at Riverside Hospital in Columbus, Ohio; the same hospital where he spent two months in a coma and his additional recovery time. During his first three months of employment at the hospital he worked as a patient escort. However, this job involved too much paperwork and too many details for a person with aphasia. So, Kris changed jobs within the hospital and became a lab technician. He now transports lab samples to the hospital laboratory. Kris finds this work very rewarding and encourages others with aphasia to try and re-enter the job market.
Members of the NAA Young People's Network
Arlene Kershaw
130 Steinmetz Dr.
Manchester, NH 03104
603-625-9287
alkershaw@comcast.net
Molly Doland
2129 Florida Ave., NW, Apt. 604
Washington, DC 20008-1911
202-483-5664
marie.doland@shawpittman.com
Carol Dow-Richards
Nevada
702-982-3075
caroldowrichards@aol.com or aphasiasupport@aol.com
Patty Kirkpatrick
2451 Haveland Rd.
Columbus, OH 43220
614-457-4544
pkirkpatri@aol.com
Sarah Scott
11 Turpins Chase
Welwyn
Hertfordshire
England AL6 0QZ
01438 717805
UKJoanie@hotmail.co.uk
Reprinted from NAA Newsletter, Volume 6, Number 1, Fall 1994
Updated August 2005
|
