Former Marine struggles to find a helpful hand for her gifted autistic son
By Chris Munzing
When you’re a child, you often have no other advocate but Mom and Dad. They stick up for you when no one else will and make your fights their own. For a child with special needs, these struggles can seem so insurmountable that it appears that no amount of fighting will right a wrong. Luckily for James Cucek, a 22-year-old autistic man, he has a very special mother: a former U.S. Marine.
Linda Cucek lives with her husband, Stan, and her two sons, James and Brian, 23 in Mission, British Columbia. James’ was diagnosed at the age of 13. Linda says she’s been fighting for her son since he was misdiagnosed as having dyslexia after troubles in school. “As a mother, I was asking myself what I was doing wrong,” Linda says.
Having grown up in the United States, Linda assumed that the government of her adopted country would step in and provide assistance for her son. Unfortunately, she soon found out that she would be the lone soldier in the struggle to help her son and would have to take on an entire government.
Once James turned 19, the Canadian government cut off his provincially funded Applied Behavior Analysis (ABA) treatment, as it does when children with autism reach adulthood. Linda felt that the progress her son was making under the treatment was too valuable to just stop and that cutting it off would do irreparable harm.
The struggle against the government has often been an uphill one. In July 2005, the Cucek family received a letter from a social worker from the Ministry of Children and Families, according to an article in the Abbotsford Times. The letter told Linda that it was time to give up on getting any treatment for James that he hadn’t already received. What surprised Linda was the letter’s suggestion that if she was unsatisfied with the services in Canada, she should go to the United States.
“When I read that letter, I said to myself, ‘I’m not going to give up on my son.’ This is not just for James, but for everyone,” Cucek says. “I’m fighting for all of the adults and all of the kids out there. I’m just so frustrated because the government is not giving us what we were promised. And a promise is a promise.”
Cucek is concerned that James’ story is not a unique one. Despite the progress made in recent years, she believes that Canada is not yet up to speed on the options available to people with autism.
“The teachers here in Canada aren’t trained to deal with an autistic child, so it can be a problem,” she said. Children with autism “don’t learn anything in school because their teachers don’t know how to teach them. James’ teachers thought he had dyslexia.”
Her struggle has captured national media attention-something she hopes will eventually annoy enough people that progress is made. “They kind of want me to shut up,” she laughed. “They think everything’s hunky dory, but it’s not. At least now, people are starting to pay attention.”
Cucek also felt that, despite the progress her son had made as a teenager, ABA wasn’t going to cut it for her son as he got older. She has fought with the government ever since to have her son transitioned to Lovaas therapy, an intensive, 40-hour a week treatment plan that can cost up to $60,000 per year. ABA, she said, is a “watered-down version” of Lovaas. “I think he needs more intensive therapy,” Linda said.
Cucek won a small victory, however, when James was granted continued ABA treatment and modified Lovaas with an independent firm, CBI Consultants. Linda thought that this might be the answer she was looking for after years of making phone calls, writing letters, and scheduling meetings to speak with government officials.
Her momentary joy was quickly replaced with skepticism for CBI. She felt that many of the people at CBI weren’t qualified to deal with her son, a charge that CBI Director Dr. Paul Malette calls “categorically untrue.”
CBI felt that straight Lovaas treatment would not benefit James, as it is aimed at younger children looking to catch up with their peers. In a report written by Malette, he calls Linda and Stan Cucek “pioneers seeking and advocating for innovative effective support for James,” but maintains that modified ABA therapy that incorporates a few Lovaas elements would help James.
“We know what we’re doing; we’ve been doing it for 25 years,” Malette says. “We’ve talked to Linda about what she’s looking for James.” Linda, however, doesn’t think that CBI is in the position to be making assessments for her son. “They’re not scientifically approved,” Cucek said of CBI. “They’re more like babysitters most of the time, to be honest. They’re trying to put the burden onto Brian without giving him the proper training that he needs. They gave him the title ‘behavioral interventionist.’ He works extremely well with his brother, but he needs the training. They’re just not giving it to him, because they don’t have the ability to.”
“We’re working with Linda to develop an intervention model to focus on his needs as an adult,” Malette says. “We’re still hoping she’s going to go for it. We have a high commitment to James and his entire family.”
James’ care is currently the responsibility of his older brother, Brian, whom CBI contracted to provide James with the government-approved therapy. Brian recently received a certificate from the Gateway Society Autism Training Program, which gives Brian the necessary skills to work with his brother, something he is excited about. “I want to see my brother grow and become a better person,” Brian said in an email. “By me working with him, I feel it will help James in social skills, behavior, and help him interact with people.”
For Linda Cucek, having Brian work with James in a professional capacity and not just as siblings is the best of both worlds. The two brothers are only 18 months apart, and despite James’ autism, the two are usually on the same page, Linda said. “Brian is very excited, he feels that he can really help his brother,” she says. “Being so close in age, they’ve been together for a long time.
Finally there will be somebody with the knowledge James’ needs.”
When the film Rain Man was released in 1988, most people associated autism with the ability to count toothpicks, cheat at blackjack and walk around with Tom Cruise. For the vast majority of those with autism, however, the affliction came with no earth-shattering abilities. James is one of the lucky ones. In a world where people with autism can be trapped in their own worlds without the ability to communicate with others, James is verbal (“extremely verbal” his mother laughs). He is also uniquely blessed on the piano.
Since first sitting down at a piano at age 4, James has progressed light years beyond the normal pianist, often playing back compositions by ear. “He’s never even had a lesson,” his mother said. “He started when he was four with a toy piano we got him for Christmas. “I remember thinking, ‘How could he play like this?'”
Today, James composes his own music. Linda said that it is the one thing that makes her son forget that has a disability and allows him to express himself. “That’s his world,” she said. The inspiration for Rain Man Kim Peek, befriended James after hearing about his story. Since they first met several years ago, Peek and his father, Fran, have encouraged the Cuceks to never stop fighting for their son. Fran encouraged them in a letter to remember his son’s message: Learn to recognize and respect differences in others and treat them as you want them to treat you.
With a former U.S. Marine, a loving brother, and the inspiration for an Oscar-winning movie in his corner, James Cucek has some powerful advocates in his corner. Whether he receives the treatment his family has fought so hard for or not, James is in the position to succeed.
Linda hopes her training as a soldier rubs off on her son, because of the lessons it taught her. “They put you through a lot, but they teach you to never give up,” she says.