FASD

Winnipeg Free Press - PRINT EDITION

One brother prospered, one died

Early intervention and the right help seem key

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The newborn came home from the hospital not with that new-baby scent but the smell of the poison his mom was hooked on.

"The solvents were coming out of his pores," said Val Surbey, recalling the baby they fostered, who had FASD so bad she could smell it.

"For the first year, he was going through withdrawal. He was irritable, crying continually and difficult to feed," she said.

Surbey has lived with the full spectrum of fetal alcohol spectrum disorder

Her eldest son Christopher, adopted at age 3 from an abusive home, had no outward signs of FASD. But he had it the worst.

Another adopted son with FASD, Ryan, weighed less than five pounds at birth, had seizures, mild cerebral palsy and a sub-mucous cleft palate.

"They didn't think he'd survive."

He's thrived.

The Surbeys adopted him shortly after birth. He received occupational and physiotherapy and defied those who said he'd never learn to walk and talk. Today, he's happy and thriving in his third year of university.

From birth, Ryan received a lot of tender loving care and treatment.

When it was time to start school, Ryan underwent an FASD assessment, scoring high in some areas and low in others. He had some of the physical markers for FASD, such as a flatter philtrum above his top lip and narrow eye width, and his birth mom's history with alcohol was known. He was diagnosed with FASD. Ryan received special help from a reading program developed at the University of Manitoba that helped him make it through school.

Now he's in university, has a part-time job, good friends and a bright future.

Not many people know about his FASD diagnosis, he said.

"It's not that I'm ashamed. It's just that I've never needed to tell anybody." It came up during a conversation once with a friend, and Ryan explained his diagnosis.

"He was kind of taken aback. He said he never would've guessed."

The stigma of FASD has grown worse in Winnipeg in the last few years since it was associated with a string of auto thefts by local teens.

"That is depressing," Ryan said. A diagnosis of FASD doesn't mean you have to expect the worst, he said.

In elementary school, he needed help and got it.

"I had a (teaching assistant) with me in elementary school. Then they realized I didn't need it and I went on my own." Handwriting has always been a challenge because he has a slight right-hand tremor from the cerebral palsy and he's right-handed.

"My writing was at the point where no one could read it." It was so bad in middle school, he couldn't read his own writing.

"I'd be thinking faster than I could write." But he got help with his penmanship.

It took him longer to grasp math, and he found the workload overwhelming. He had to repeat physics at summer school.

His first year of university was a struggle.

"It's a different style of teaching. They don't have that much time to spend with you... You have to figure a lot out for yourself. There's no more being babied. If you don't go, it's your money and your loss."

He's studying psychology and sociology because the subject matter fascinates him. "People don't get boring."

At the other end of the spectrum was Christopher, who had a bad start.

He had no obvious physical markers for FASD but clearly had suffered more fetal alcohol damage in the womb. Christopher spent his first two years with his birth mom, who abused cocaine and alcohol. The boy was neglected and suffered physical abuse, including a spiral fracture on his leg as an infant and sexual abuse by his birth mother's boyfriend, said his adoptive mom.

He had "reactive detachment disorder" from a lack of nurturing in his first two years. Christopher had no anxiety about strangers but could never bond with those closest to him.

He was officially diagnosed with FASD after a hair-raising incident in Grade 4 that led to a psychiatric assessment. While his mom was talking to his teacher after school, Christopher took off. He was found near the water-filled ditch by the fire hall on Leila Avenue where a boy, Adam Young, had drowned earlier.

"He told the principal he wanted to find out what it was like to die," Val Surbey said.

Christopher couldn't understand the consequences of his actions or learn from his mistakes. He would do dangerous things such as play chicken in traffic and get hit by a car. On another day, he'd ride his bike in traffic down the middle of the street.

"It was always the first time," said Surbey.

He once found a syringe on the tennis courts near his home and jabbed himself in the arm several times. Surbey was relieved when blood tests for hepatitis C and HIV/AIDS were negative.

Christopher put himself in some dangerous situations, Ryan recalled.

"At the time, I was thinking my brother is acting like a total idiot." When Ryan was old enough to understand the brain damage caused by FASD, he understood his behaviour. "I can't blame him."

His parents tried to shield Ryan and his siblings from Christopher's troubles. "They tried to keep it as far away from us as possible," Ryan said.

But they didn't hide it. Surbey took the two boys to conferences to raise FASD awareness and shred some of the stereotypes.

"It's not limited to people who are aboriginal," was Surbey's message at the time: "Here are two blond-haired, blue-eyed boys."

Now, there is just one. Christopher's life ended five years ago when he was stabbed to death in Elmwood.

It's just Ryan left, who is speaking for himself.

"If people knew more about FASD, it wouldn't seem as alien to them," he said. "The more they learn about something, it's not as scary as you see in the media: 'These people are going to steal your car.' They're a very small minority of people with FASD. They have behavioural issues and impulsiveness." No one should label everyone with FASD as potential criminals or dupes eager to be recruited by gangs, he said.

"You can't do that to every single person. It's just not fair."

carol.sanders@freepress.mb.ca

Republished from the Winnipeg Free Press print edition February 26, 2011 H5

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