Family shines light on autism
By Natasha Clark, Reminder Assistant Editor
Walk FAR for NAAR, a fundraider named for Arthur (left) and Radcliffe (right)
EAST LONGMEADOW Next time you're in the grocery store experiencing shock over the seeming lack of control a parent may have over their child as he or she runs down the aisle snatching things off the shelves, think of the Kenisons.
"Before, when I was single, I would raise my eyebrows [at 'those people,']," Gina said as her son Arthur ran past her in her East Longmeadow home. "If autism taught us one thing, it is not to judge anybody."
In observation of April being Autism Awareness Month, the Kenison clan opened their home to Reminder Publications to shine some light on a disorder that has affected their two sons.
Autism is a complex neurobiological disorder that typically lasts throughout a person's lifetime.
According to www.autismspeaks.org, "it is part of a group of disorders known as Autism Spectrum Disorders (ASD). Today, 1 in 166 individuals is diagnosed with autism, making it more common than pediatric cancer, diabetes, and AIDS combined.
"It occurs in all racial, ethnic, and social groups and is four times more likely to strike boys than girls. Autism impairs a person's ability to communicate and relate to others. It is also associated with rigid routines and repetitive behaviors, such as obsessively arranging objects or following very specific routines. Symptoms can range from very mild to quite severe."
Radcliffe and Arthur
Kenison and Gina tried to conceive a child for nine years before they were successful.
For both 1981 graduates of East Longmeadow High School, the birth of their children changed their lives in a variety of ways.
"From the minute [Radcliffe was] diagnosed, life was not what you expected it to be," Gina said.
Gina said when Radcliffe was 15 months he still had not spoken. As an aunt of young children she said it was a "red flag." She said he had lack of eye contact and if she laughed, he would not imitate. He also had a lack of engagement during games like patty-cake. To her, all of these things were signs.
Radcliffe, now 5, has a full head of brunette curls and thick eyebrows. He is the first born, a younger version of his father. At first glance he seems like any other five year-old boy. He was running and jumping from the couch to the floor and back again when this reporter arrived for the interview. Every now and again he'd dip his hand in and out of the toy box. He preferred to stand rather than sit when he watched television and at one point, he paused, walked over and stroked this reporter's hair.
"He likes hair," Gina laughed and explained that she is a hair dresser.
As he moved around, his two-year-old brother, Arthur, was right behind him. During the interview, even though he climbed on things and ran around just as much (even removing his diaper from time to time) he stayed close to his mother. He climbed on and off her lap repeatedly.
Once he moaned and instantly Gina was up and asking him what he needed.
"They have no sense of independence. [We take care of] every want and need and there's a lot of those," Gina added, before disappearing into the kitchen.
Though they can say some words, for the most part, Radcliffe and Arthur are non-verbal. They also lack some motor skills. In Kenison's words, "their brains know what to do but it won't tell their muscles."
In his wife's absence, Kenison tried to explain what it's like for the boys.
"Put yourself in a foreign country where you don't know the rules and regulations, and you can't understand the language," Kenison said.
Later Gina returned with Arthur, cutting a grape into pieces for him to eat.
Forms of ASD can also affect the senses. Gina said their sense of smell and taste is hyper-sensitive. Just the sensation of something too hot or too cold can put them off of foods and getting them to eat a "normal so-called diet is a struggle," she said.
"[For example], Radcliffe likes pretzels. If he had his choice he would eat them for the rest of his life," Gina said.
So how does the family cope? When asked to describe a typical day, it seemed like the Kenisons cram into 24 hours what most families may do in a week.
A typical day
Radcliffe and Arthur usually wake up between 1 and 4 a.m. They can be up from anywhere between 2-3 hours before they fall back asleep. Even at that early in the morning they have a need for movement and play. They are usually back to sleep by 5 a.m.
Kenison has to report to work at the Hampden Police Department for 7:45 a.m., so he is up, to stay up, at 6:30 a.m. Radcliffe attends Meadow Brook School and his bus arrives by 8:15 a.m.
Between 8:30 a.m. and 10:30 a.m., and 11 a.m. to 1 p.m., Arthur has several Early Intervention Service sessions at home that range from speech and occupational therapy, which are conducted by visiting autism specialists. Any child younger than three years of age who has a developmental delay or a physical or mental condition likely to result in developmental delay is eligible to receive early intervention services, according to Autism Speaks.
Gina picks up Radcliffe from school at 2:30 p.m. so he can attend other development classes. To do this, Radcliffe must be dismissed early from school.
Gina hauls him 35 miles away to see a specialist three times a week. She also works a couple of nights a week. By the time Kenison gets home, the next battle is getting the boys to eat supper.
"Radcliffe does not want to eat," Kenison explained. "Dinner is a chore. We have to literally force him."
A bath is followed by the challenge of getting two energetic boys to bed. And then, soon, it's morning again.
"One hundred percent pure exhaustion" is what Gina called it.
"It's a vicious cycle that starts all over again," Kenison noted. "We wouldn't trade them for a billion dollars, but everyday is hell."
The fact that his boys can't express themselves is what Kenison finds the hardest. He said if there is something wrong with their jeans, (for example if the zipper is bothering them) they are not able to communicate it. Yes, you'd see them taking off their pants or fidgeting with them, but as to the exact reason why, it could take a while to figure it out.
Radcliffe and Gina
The couple worked seamlessly as a team during this reporter's visit. They finished one another's sentences, tended to the the boys (putting them down, picking them up, fixing their clothes), and answered questions without pausing.
According to www.autismtoday.com, the divorce rate in families with autistic children is at 75 percent.
They agreed that raising two children with ASD can be very stressful. For one, their hectic schedules everyday barely leave them with alone time.
"Loss of privacy is a huge issue," Gina said. "[With specialists] coming for services we constantly have people in the house."
Going out is just as tough. The couple said, because the boys are sensitive to foods, there is almost nothing on a restaurant menu they will eat. In the time it takes for them to be seated at an eatery and feed the boys food they've prepared for them at home, "by the time we're ordering they are ready to go," said Kenison.
To go on vacation they have to bring at least one other person with them, because the boys wander around, Gina said.
"We dress them in bright colors when we're out [so we can spot them]," Gina said. She said the boys can focus on an object and take off after it. They have no fear or concept of danger.
"The only people that understand are other families with autistic kids," Kenison added.
Looking to the future
Kenison and Gina have taken a number of initiatives to ensure that Radcliffe and Arthur have the best opportunities to develop skills. At home they have a Picture Exchange Communicator (PEC). Gina displayed two versions: an older edition and an updated version. The former was a binder containing photographs of every item one can think of (a sandwich, toilet, toothbrush, etc.) that the boys can use as a communication tool. The latter version is battery operated with buttons to push.
At Meadow Brook Radcliffe uses a more advanced touchscreen version, complete with voice output, that is in the cost range of $9,000. He is also involved in an Individual Education Plan (IEP), which outlines in great detail a child's educational program.
"The school system is very, very good," Kenison said. "They truly care about him."
Earlier in the school day Radcliffe is in a class of about 20 students. In the afternoon he attends a "Readiness" class where he is one of seven students. Here, he is taught the same curriculum as other elementary students, but at a slower pace. Gina said he is also learning skills like taking off his shoes and neatly tucking his socks in them.
He also is capable of operating the VCR to watch his children's videos.
But still, Gina said "there's an uncertainty of where they'll be 10 years from now."
They also hope to keep the boys involved in activities as time goes on.
"A local karate school offered training to help burn energy in the future," Kenison added.
State and national movements
Two leading autism advocacy groups recently merged. NAAR (National Alliance for Autism Research) and Autism Speaks announced their merger in February. In a jointly-released statement they said this was done in hopes of bringing "the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis."
Last year the Kenisons and their friends and family participated in Walk FAR for NAAR, a fund-raising effort for autism research. Their team, Radcliffe is the Reason and Arthur Too!, was the number one fund-raising team at last year's event, raising $15,000. The couple is already looking forward to the 2006 walk that will take place on Sept. 16 in Westfield. The difficult part of the Walk is raising the money, Kenison said.
With so many other fund-raising efforts for illnesses such as cancer and AIDS, Kenison said it can feel like "you have to compete with other causes [for money]."
He said he would like to see more corporate support.
Gina compared those who donate to the table-waiting/serving business.
"Usually the ones who don't have it are the ones that tip," she said.
Since Kenison works in law enforcement he said he plans to get involved with ALEC (Autism and Law Enforcement Education Coalition).
According to www.mnip-net.org, "ALEC provides increased opportunities for training police officers, firefighters, emergency medical personnel and other public safety officials in recognizing autism and taking steps to assure that interactions with individuals on the spectrum are handled in the safest manner possible."
"Autistic children may exhibit violent or threatening behavior due to a lack of impulse control, or a failure to recognize boundaries or 'personal space'. In addition, caregivers may need to use physical force to restrain autistic children from harming themselves. To a casual, uninformed observer, such a scene may prompt a 911 call that will require a responding officer to assess the situation quickly and fairly."
Kenison plans to sign on to learn how to train local law enforcement personnel.
While the exact cause of ASD is still unknown, there have been many possibilities under investigation for several years, including the link between heredity and genetics; problems during pregnancy or delivery; environmental factors such as viral infections, metabolic imbalances and exposure to environmental chemicals.
To learn more about autism, organizations that support the cause or research efforts, See our home page and click on "featured story links."