Brain injured children inspire fight for
support
HELEN
HENDERSON
Daniel Cohen was 17 and not wearing a seatbelt when the
car in which he was riding crashed.
Jesse Payette was 12 when he fell out of a tree over a
ravine.
Daniel is now 28, Jesse 17. Both struggle with brain
injuries acquired after birth.
During the last few weeks of the year, their families
want their stories told because they hope that, in 2004,
Ontario will finally give their children and thousands of
others like them the attention they deserve.
Among other things, they would like:
 An
education system that recognizes and provides the support
needed to help kids with acquired brain injuries succeed.
Training
to help law enforcement and court officers recognize and
understand brain injuries.
More
training for family physicians to help them diagnose minor
injuries sooner.
A
registry and identity bracelet to help strangers understand.
A broader
system of community family support groups.
Daniel Cohen was riding home from his family's cottage
11 years ago when his life changed forever. He was in a coma
for weeks, spent months in hospital and a year at the
Bloorview MacMillan Children's Centre.
In those first days after the accident, his mother,
Lainie, spent long hours at the Sunnybrook and Women's College
Health Sciences Centre desperately searching for hope. She had
listened to all the medical experts telling her exactly what
the family could and should be doing. But it was only when she
happened to pass a door with a small sign about family support
that she found the emotional connection she needed.
The woman she spoke to just listened as her story came
pouring out. "I can't explain it," Cohen says now. "It was so
powerful."
Cohen, who went on to write Crooked Smile, a
book about her family's "journey toward healing," is one of a
group working with the Ontario Brain Injury Association to
build a strong association to offer support, advocacy and
information to brain injury survivors and their families in
the Toronto area.
"Awareness is the key," she says.
Daniel himself has been talking to high schools about
brain injury and the importance of wearing a seatbelt. His
mother is an active advocate, hoping to persuade the province
to recognize that kids with acquired brain injuries can
benefit from specialized help and to help family doctors
recognize the headaches, nausea and memory problems that may
be symptoms of so-called "mild" brain injuries.
She also has been talking to York Region police
recruits about the importance of ticketing those who are not
wearing seatbelts and also the physical, cognitive and
emotional signs of brain injury. "Unless they know what to
look for, they may assume they're dealing with someone who is
drunk or having a seizure," Cohen says.
Education for law enforcement officers is one of the
key things Annemarie Payette has been fighting for in the
Kincardine area, where her son Jesse fell from a tree five
years ago when he was 12.
Bleeding from the back of the head, Jesse couldn't walk
and couldn't see after the accident. A friend carried him
home.
Payette, along with other families in the area, would
like to help local police learn how to recognize and
communicate with the survivors of brain injuries.
"An acquired brain injury is an invisible disability,"
she says. "Schools, courts and police provide accommodations
for people with visible physical disabilities but even though
a person with an acquired brain injury faces some of the same
obstacles, there are no supports for them."
To help Jesse cope, he is registered with the Alzheimer
Society's service to safeguard "wanderers" and wears an
identity bracelet.
The province has formally assessed Jesse as needing
one-on-one assistance in school because it takes more time for
him to complete tasks and he has short-term-memory problems.
But there's no money in the education system to provide help
and no insurance company to cover the cost, as is often the
case with brain injuries acquired in auto accidents.
With his mother acting as a full-time educational
assistant, he is working at home on his high school diploma
through a provincially accredited "distance school." His marks
are in the 90s.
Not being able to go to school is very isolating, says
Payette. But his three brothers and his friends have been
wonderful, sticking by him and encouraging him to get involved
in things like three-on-three, non-contact hockey. "You just
can't give up," she says.
For more information on the Brain Injury Association of
Grey Bruce, contact chair Sandy Ribey at 519-368-5304 or
e-mail mailto:payette@tnt21.com?GXHC_gx_session_id_=a4b72e422d7ad431&.
In the Toronto area, community meetings about starting
support groups are scheduled for the evenings of:
Jan. 12
at the Scarborough Civic Centre, 150 Borough Dr.
Jan. 13
at Community Head Injury Resource Services, 62 Finch Ave. W.
Jan. 19
at the Toronto Rehabilitation Institute, 550 University Ave.
Jan. 20
at Eatonville Public Library, 430 Burnhamthorpe Rd.
For more information, call Michele Meehan at
1-800-263-5404, ext. 232, e-mail mailto:michelem@obia.on.ca?GXHC_gx_session_id_=a4b72e422d7ad431&
or check http://www.obia.on.ca/?GXHC_gx_session_id_=a4b72e422d7ad431&.
For information on Lainie Cohen's book, the proceeds of which
go to the Bloorview MacMillan Children's Foundation, check http://www/?GXHC_gx_session_id_=a4b72e422d7ad431&.
crookedsmile.org.
Write: Helen Henderson, Life Section, Toronto
Star, One Yonge St., Toronto, Ont. M5E 1E6. E-mail: mailto:hhenderson@thestar.ca?GXHC_gx_session_id_=a4b72e422d7ad431&.
Additional
articles by Helen Henderson
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