newspaper article

This is an article run in our local newspaper about fragile x and our family. There are a few things that are not 100% but we thought it was a great article either way and it gets the word out. Thank you very much Susan Ruttan and the Edmonton Journal for taking the time to do the article.

Misunderstood condition marked by sudden rage: Aggressive, autistic, and affectionate are just a few ways to describe the Groves' three children.

Edmonton Journal

Monday, May 17, 2004

Page: A1 / FRONT

Section: News

Byline: Susan Ruttan

Dateline: EDMONTON

Source: The Edmonton Journal

EDMONTON -- When strangers glare at her often unruly children, Lori Groves has a ready response. She's given it so often that she's had it printed up in a business card to hand out. "I am sorry if some of the noises I make or the things that I do distract you or bother you," it says. "I am not doing them on purpose. I have fragile X syndrome, and this causes me to do some things that I don't have any control over..."

To have a child with fragile X syndrome, say parents, is to face endless ignorance and misunderstanding about the genetically inherited condition that so severely affects their child. Raising three children with fragile X, as Lori and Byron Groves have, is a burden to daunt all but the most dedicated parents. The Groves' three children, nine-year-old identical twins Connor and Zachary and their little sister Taizsia, six, look like blond, bubbly angels.

Watching the kids at home after school, with Connor and Zachary drawing pictures in the living room and Taizsia playing with her Barbies in her bedroom, they appear unexceptional. Only the frantic, exhausting pace of their play, the twins' limited speech, and the scratches on Taizsia's arm hint at the challenges they pose.

Fragile X syndrome causes mental retardation and a variety of behavioural problems that may include autism and aggression. The mix of problems in each fragile X child is different; what unites them is a genetic test that proves they have the syndrome.

In the Groves family, all three of their children can burst into sudden rages, especially Connor and Taizsia. Each of them may attack their siblings, destroy the furniture or hurt themselves. And of course, one raging child sets off the others. Three siblings with fragile X are more than the sum of their parts. "Things can happen right out of the blue," said mom Lori in an interview in the family home in northwest Edmonton. "They'll be watching TV and all of a sudden they'll get up and they're mad about something. They can throw a dresser across the room, that's how strong they are. They can be very abusive."

The violence never lasts long, say the Groves, but for the safety of family members, there needs to be two adults in the house at all times to keep the kids in check. "They're a very stressed family, that's for sure," said Dr. Mitch Parsons, the child psychiatrist who deals with the three Groves children. "It seems like one child goes wingy and then everything's OK, and then the other one goes, and the other one goes." But the Groves are trying very hard to make their family work, added Parsons. Parsons has treated about 10 fragile X children in the city over the past 16 years. He has never heard of a couple anywhere with three fragile X kids.

The Groves do get help. A worker from the YWCA intensive support program comes in from 4:30 p.m. to 8:30 p.m. on weekdays and from 10 a.m. to 4 p.m. on Saturdays. On Monday and Friday the Groves get the evening off, and two support workers come in to provide respite care. The house is child-proofed in the extreme. The doors on the kids' bedrooms have been removed, because otherwise they'll slam them so much they'll wreck the door. There are no dressers in the bedrooms for the same reason. Lori and Byron had no idea about fragile X when they had their twins in 1995. After several miscarriages, they were just thankful to have two baby boys.

Soon, however, they realized something was wrong. The boys were delayed in reaching many developmental milestones - they didn't walk until age two, didn't talk until age four. From the time they were babies, they would bang their heads repeatedly on hard surfaces. Many CT scans were done to check whether the head-banging was causing permanent damage. Then the twins began fighting. "We call it 'bear-cubbing,' because if you see them together, they'll be mauling each other like bear cubs," said Lori.

The Groves started looking for answers. It wasn't until after their daughter Taizsia was born, however, that they were sent for genetic testing for fragile X syndrome. The DNA tests showed all three children were affected, even bright little Taizsia who had walked at nine months. Lori was the carrier. Unlike some other genetically transmitted illnesses, fragile X can stay in the invisible carrier form for generations, so Lori had no idea she had the defective gene that causes fragile X. Other diagnoses have followed. Connor has been diagnosed as autistic; his behaviour problems got him kicked out of school last year and put in the paediatric psychiatric unit of the Royal Alexandra Hospital for a month.

Taizsia, who is less developmentally delayed than her brothers, has been diagnosed with oppositional defiance disorder, hyperactivity and epilepsy. She has also spent time in the Royal Alex unit. All three kids are on a variety of medications for their behavioural problems, including medications to make them sleep at night. For Lori and Byron, life has been a struggle to get help for their children, and to foster an understanding of this little-known condition among Edmonton health-care workers and teachers.

Unlike other conditions, fragile X doesn't have much of an organization, either locally or nationally. It's believed that many children with the condition go undiagnosed or are misdiagnosed as autistic. There is a small, local group of parents of fragile X kids who get together a few times a year for outings. Lori remembers the first such gathering, at a swimming pool. At one end of the pool she saw a group of little children smiling up at her with the characteristic faces of fragile X - high foreheads, prominent ears and big smiles. "I call them little monkey faces," she said. "They all look the same."

Getting a larger profile for the condition, however, has been a challenge. Given their kids' aggressive natures, the Groves have many times had to go to the hospital with a scraped or cut child. To deal with the suspicious looks from staff, they bring a pamphlet on fragile X to explain why their kids get hurt so much.

For the last three years, they've given a lecture on fragile X to teacher assistants at an annual conference at Grant MacEwan College. And they maintain a website, all in an effort to educate people about the disorder.

Jackie Dickson, co-ordinator of the YWCA service for children with disabilities, which provides support workers to the Groves, said she admires the effort the couple has made to educate themselves and others about the condition. The Y supplies support to one other family in town with a fragile X child.

For the Groves, the most painful consequence of all has been accusations of abuse. "We get a lot of fingers pointed at us, from schools, from day cares, from neighbours, from people at malls," said Byron. People assume all that screaming and fighting must be the parents' fault. There was even a lengthy child welfare investigation to determine whether the Groves were responsible for their children's behaviour. "That was the lowest low of our life," recalled Lori. The couple eventually got a written apology from child welfare.

Today, despite the incredibly difficult situation, the Groves have had some successes and rewards. "Actually, knocking on wood as I say this, the last six months it's been pretty quiet from the Groves," said psychiatrist Parsons. "It's been going better." One reason is the new school the twins are in, the public school board's Mee-yah-noh school where students with mental delays and autism can get special help. "They're both thriving," said Lori. The Groves figure the twins' limited vocabulary has doubled since moving to Mee-yah-noh last fall. Taizsia is also doing well in school, attending a special class but doing Grade 1 level work. "She loves doing homework," said Lynn Klymchuk, one of her support workers. Taizsia's problems are more behavioural than learning. At age six, she's been known to beat up Grade 3 boys. "Taizsia's almost always covered with war wounds," said Byron, but she often is the instigator of the fights.

The Groves moved into a larger house a month ago, which is helping put space between fighting children. Unlike autistic kids, fragile X children are usually affectionate. That's certainly true of the Groves children -- even at age nine, Connor happily curls up in his mother's lap for a long cuddle. And like many fragile X kids, the Groves children love music. The Groves have used Shania Twain's recordings to soothe their rambunctious twins since they were born, and Shania still has an almost magical calming effect on them, particularly on Zachary. Zachary got to attend a Shania concert last December and was stunned to see his idol in person. "He knew every word to every song that she sang," recalled Lori. "And he sang too, and the people beside us were laughing. He just loves her."

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