None of us expects to have a child with a lifelong developmental disorder. Barb Johns has three. Here is her family’s story of survival, hope and happiness.
A tall, thin child with dark hair answers the door. He looks down when I talk to him, never meeting my eyes or responding. As soon as I step in the house, he scampers off to his room. “Sorry, but I just had to finish something on the computer,” his mom, Barb Johns, tells me as she emerges from the basement of her Oakville, Ontario home. “Christopher is home sick today…I’ve had all my kids home sick over the last month. It’s been crazy.”
Johns bears the slightly rumpled and bleary-eyed signs of a mother whose kids have all been home from school with a nasty cold or flu. Her hair, brown with streaks of grey, is pulled back off her pale face. But her animated voice and cheerful demeanor belie the fact that for Johns, the bouts of flu and ear infections that turn most households upside down are the least of her concerns. You see, all three of her boys – David, 14, Matthew, 13, and Christopher, 11 – have Asperger’s Syndrome (AS), a lifelong developmental disorder that impairs communication, behaviour and social interaction—sometimes severely.
Considered part of the “autism spectrum”, the disorder requires both medication and intensive therapy to teach those who have it the most basic tenets of acceptable social behaviour—how to stand an arm’s length away from someone when you talk to them, or that it’s not personal when someone beats you at a board game. The boys have also been diagnosed with attention deficit hyperactivity disorder (ADHD). David and Christopher also have Tourette Syndrome (TS), which, in its milder form, is characterized by movements or tics such as eye rolling, throat clearing or head jerks, but in severe cases like Christopher’s, involve dramatic back arches and kicks. It’s not uncommon for children who have AS to also have one—or both—of these other disorders.
People with AS may lack a full range of facial expressions or the ability to read them, make eye contact less often and may not tolerate the sound of other people eating. The social demands of school pose a constant struggle. “Because of their social impairments, kids with AS are often ostracized by their peers for seeming eccentric or weird,” says Nancy Plater, community services manager at Kerry’s Place Autism Services, a non-profit organization that runs socialization programs for kids with AS and autism. Yet despite the laundry list of symptoms, AS can go undiagnosed for years—in fact, the condition was only recognized as a diagnosis in 1994.
On the upside, those with AS can have incredible memories, obsessive interests and creativity that may lead to great achievements. Albert Einstein and Glenn Gould are just two of the famous and highly intelligent people some believed to have lived with AS.
David, Matthew and Christopher are all “brilliant at math, science and music.” Says Johns, since these are subjects that require precision rather than communication. They have a “marvellous ability to focus beyond the ordinary,” adds their grandmother, Mary Jane Howie, who says she thinks her grandsons may have careers working with computers.
Getting them there, though, requires 100 per cent focus by their mother. Since a teacher first suggested that her middle son, Matthew, see a specialist for testing—which led to diagnoses for all three—Johns has redesigned her life to ensure her boys get the treatment and support they need. She separated from the boys’ father, who behaved as if he had the disorder but refused to acknowledge it. She’s had to eschew full-time work in favour of occasional part-time work typing up teleconferencing minutes and doing data management from home. Her unpredictable schedule means she may be working until 2 a.m. “I don’t think I could manage a full-time job out of the house,” she says. “Half of every month I have a child at home because he’s being bullied, can’t deal with a social setting or is sick. I’m also at the doctor’s office four to six times a month. So we have to rely on welfare and food banks to get by.
Recognizing the bullying and awkward situations the boys face daily, the school has now given Matthew and David each a “safe card” which they can hand to their teacher to leave the class without an explanation. They head to the office and phone their mother who talks them through the problem or takes them home
“My boys are learning two curriculums every day—academic and social, which leaves them exhausted,” Johns explains. “They learn through negative learning. If they bump into a kid by accident, they don’t know how to say sorry. They don’t know how to interpret what other kids say and are incapable of reading sarcasm. They can’t do team sports because they’re overwhelmed by the other kids and can’t read their expressions. And their motor skills are frustrating. One still can’t ride a bike and another can’t tie his shoes up tightly.”
Advocating for their medical needs also requires a great deal of energy, a reality shared by all parents of special-needs kids.“One of the boys’ medications is not on our drug plan,” Johns says. “They need it in order to attend school as it helps keep them calm. But the cost is $10 a day for each child.” Johns went to a symposium on ADHD, where a drug representative told her about a compassionate program that provides meds for people who can’t afford them. “My pediatrician hadn’t mentioned the program, which showed me you have to keep looking for help until you find it.”
The downside of this medication is that it suppresses appetites for the entire day, so Johns’ sons are never hungry for lunch. Not wanting to waste food, Johns doesn’t send lunches that would be thrown away, but a concerned teacher threatened to call Children’s Aid, thinking the boys were being neglected. Johns brought a note from her pediatrician to explain the side effects.
Johns has a 17-year-old daughter, Sarah, from a previous marriage, who is not affected by the condition. Sarah helps out a lot with the boys, and Johns knows her daughter is aware she doesn’t have a traditional family existence. But Sarah recently told her mother that she hopes to study special education at Brock University in St. Catharine’s Ont., because she wants to help kids like her brothers and knows just what it takes to provide the support they need. “My mom is probably the strongest person I know,” says Sarah. “She’s not afraid to stand up for what she believes in. She would do anything for us.”
After much persistence, Johns is getting money for a respite care worker from the provincial government, allowing her to devote more time to Sarah and her long-time interest in Girl Guides. Johns was a guide herself, and has been a leader for more than 12 years. This year, she is heading up Sarah’s Ranger’s group, giving mom and daughter some much-needed time just to have fun. This respite care also buys Johns an opportunity to do things that most of us can easily arrange with a phone call to a babysitter or help from a spouse. “Now I can do things away from the house, like meet a friend for coffee and a movie,” she says.
It’s been almost three years since the boys were diagnosed and all three are improving. In fact, Matthew is in a new school, is no longer teased, and he’s joined the band playing the drums. “There was a time when Matthew would walk into our house and not talk to anyone,” says Howie. “He was isolated and isolating. Now he has conversations and even plays games with me.” While both Johns and her mom say that David has become more distant with family and peers, they think it’s a combination of AS and the fact that he’s entering puberty. Overall, he has improved his social skills and enjoys spending time with the respite workers who come to their home. Christopher has honed his communication skills and is learning the difference between how to approach familar people versus strangers. Right now he’s not in school because his tics from TS are bothering him, but Johns is hopeful a new medication will bring them under control.
“I’m working to make my boys as content and productive as they can be,” says John s. “The reality is that 60 per cent of people with AS never have relationships, so I will always have at least one of my boys living with me. This is not a bad thing. At least I won’t be sad about an empty nest.” CF