By Shanley Stern
Lisa Noke-Kearney may never be able to hear her son speak a full
sentence or initiate a hug.
But, through the pain of finding out her 4-year-old son Ryan was
autistic, Noke-Kearney found what she believes is her purpose in life.
Since the prognosis, Noke-Kearney, who grew up in Waltham and
recently moved to Arlington, has been volunteering for the National Alliance for
Autism Research, pitching in her time, thoughts and sweat to assist one of
the only organizations which uses research to try to find a cure for
autism.
“This is the only thing I can do to help my son,” Noke-Kearney said.
“I always find it difficult, I never give up, but it never gets easier.
Having to live with this every day without a lot of research motivated me
to get involved. I feel I belong with this group because if I can’t help Ryan
directly, then maybe I could help people like him.”
This month it is especially important for Noke-Kearney and NAAR to
get the word out about autism. April is Autism Awareness month and according
to NAAR statistics, autism is on the rise. Only two years ago, one in every
500 babies were diagnosed with autism, now one in every 250 babies is
autistic.
There are few answers to what causes this complex brain disorder
that inhibits the ability to communicate, respond to surroundings or form
relationships with others. Some recent research suggests autism could be a
genetic disorder, but nothing has been confirmed yet. There are no
treatments, cures or even blood tests to diagnose autism. Diagnoses are
made purely based on observation.
“Despite increasing national interest in autism and strikingly high
prevalence, autism research remains one of the lowest funded areas of
research by both private and public sectors,” according to a NAAR fact
sheet.
To look at the tall, blonde little boy running around the kitchen
like a typical child, it’s hard to see the severity of his disability.
It’s only when Ryan is thirsty, hungry, tired or feels any other
emotion that the difficulties become evident. Although Ryan is considered
a high functioning autistic child, he can say only a few words. But, those
words don’t come unless someone asks him to repeat after them.
It takes only a little frustration for Ryan to start screaming —
and no one, including his mother can reach out to Ryan to give him a random
hug or kiss.
“He didn’t seek out his mother, he didn’t want to be held. I wanted
my children to be able to play together. It’s hard to see (his sister)
Marissa wanting to play with him and he pushes her away. She doesn’t understand why,” Noke-Kearney said. “The whole goal is to get him to talk and he just doesn’t. Every parent wants to communicate with their child and we just
can’t.”
Not that Ryan hasn’t improved since his diagnosis. He attends a
public elementary school in Medford and is in a special class. Ryan’s teachers
and his home trainer Megan McCubrey use a teaching method called Applied
Behavioral Analysis to help Ryan learn. ABA breaks down a task and rewards
the child for any small part of the task they complete.
“Children with autism are very visual learners,” McCubrey said. “The
main goal is to get him to attend to a task.”
McCubrey is in the process of teaching Ryan to use a communication
board which allows him to pull a drawn picture of something he needs and
give it to someone who can help him. For example, if he is thirsty, he
could take the picture for `drink’ off the board and hand it to his mother.
“He’s at the very first stages of learning to use it,” McCubrey
said.
There is no way for Ryan’s parents to know what he will be capable
of when he grows up. Some children improve; some do not. For Noke-Kearney,
getting involved in NAAR is her only defense against the unknown.
“I can’t be with him forever. How is he going to function? We still
don’t know how these children are going to be when they grow up,”
Noke-Kearney said.
Co-chairing the Greater Boston Walk For Autism Research in Brighton
Sept. 20 is one way Noke-Kearney is contributing to help realize her goal
of finding a cure for autism. Proceeds from the walk go directly toward
funding autism research. Last year, 7,000 people participated in the event,
raising $875,000 of which 83 cents of each dollar went directly to research.
“Ryan was given to me for a reason — to help other families. I feel
this is what I was meant to do. Ultimately, I would like to see a cure in
my lifetime,” she said.”
For more information on autism or how to participate in the Greater
Boston walk, call 1-888-627-6227 or logon to www.naar.org.
http://groups.yahoo.com/group/-AuTeach/messages