Tragic Hangover: Family paid heavy toll

Tragic Hangover: Family paid heavy toll for Tom's 'success'

Connie Higginson-Murray
Citizen Special

Sunday, August 06, 2006

Fetal Alcohol Spectrum Disorder affects one to three out of every 100 births in Canada. Connie Higginson-Murray tells the story of two families and their long struggle to cope with its devastating effect on children whose mothers drank alcohol during pregnancy

'There was always something sad about Tom," says his mother. "It is part of his nature."

In the 17 years he spent with his adoptive family, Tom brought some happiness. But mostly he stretched his parents and four siblings to the edge of what was humanly bearable. Tom acted out, disobeyed, manipulated, stole and threatened. He was incapable of following even simple rules, and he was relentlessly unpredictable and at times violent.

Alice and Bob adopted Tom at three years old after fostering him for one year. It was a family decision.

"He stole our hearts, all six of them," says Alice. "When he was young, he had a pixyish face, which made him look very endearing."

Tom was also smaller than other kids. In kindergarten pictures, he is the one with the little toothpick legs sticking out of his shorts.

What Alice and Bob did not know is that Tom's facial features and smaller body are tell-tale signs of an injury he sustained before he was born. When she was pregnant, Tom's mother drank alcohol. The alcohol permeated her placenta and was absorbed by her unborn child. Tom suffered irreversible brain damage and, from that point on, was destined to a lifetime of struggle.

Given his condition, Tom is lucky. He hasn't ended up in jail or on the street, addicted, or in an abusive relationship, poverty and isolation. He has been spared the fate of the majority of those affected by Fetal Alcohol Spectrum Disorder -- but his "success" in life has cost his family dearly.

Tom's family wrapped their lives around him. For 17 years they maintained a tightly controlled home life that centred on the constant supervision of Tom. It was the only way they could survive in a household that was constantly in flux, Alice says.

"Tom likes living life on the edge and he always wants to be where the excitement is. His emotions are unpredictable and unstable. Things can be fine one minute and then terrible the next. This makes him extremely vulnerable and means we had to be relentlessly attentive to him."

Even though they were hugely committed to the adoption, Alice says that if there had been financial stress or marital problems, or if they had not had tremendous community support, they never would have made it.

"Tom came into our home at such a young age that any problems could be overcome with lots of love -- that's what we were told and that's what we believed," says Alice.

Tom's family managed to keep him from nosediving in life but in the end, Tom did leave home. In November 2004, his aggressive and unpredictable behaviour led to police being called in. For a while he lived in another small Ontario town with a young couple as his guardians and did reasonably well.

"We talked on the phone twice a week -- Wednesdays and Sundays -- and he came home every third or fourth week," Alice says. "Tom says too that the separation has saved our relationship."

Then the rollercoaster ride started again and the couple couldn't cope. Tom asked to come home but, says Alice, "the best thing we ever did was to say 'no'. We would have ended up where we were before. This way other services kicked in and a place was found for him in a group home."

Fro a couple of months, Tom lived in the group home, where social workers made sure he took the medications he needs to counter aggression and depression and that he sees his psychiatrist once a month. The medications have some serious side effects but at least, Alice says, they have given him some quality of life.

The next step was to a transition home where he gradually took more responsibility for his daily living and began to participate in setting goals for his immediate future. And next week, Tom will move into an apartment. He will continue to have support from social services and need help managing his money, but for the first time he will be living on his own.

He knows it's going to be tough," Alice says. "But he thinks he can do it. He's trying really hard to get his life together and move away from the edge he's been on."

Tom's participation in family life has also improved. "We see him at least once a week and often meet at Tim Hortons for coffee. And he came with us on a family vacation a few weeks ago and that was really good."

It's an equilibrium that makes the best of a difficult situation. "Tom will always live day to day," says Alice, "and today I am detached from him but not detached. It's that distance between us that is keeping our relationship healthy. I love him, and he ends every conversation with 'I love you, Mom.'"

Coping with FASD "has come at an enormous cost to our family," says Alice. "We have been stretched and we have grown ... we know that the prayers we prayed and the tears we cried for Tom and with Tom have not been in vain."

Connie Higginson-Murray is a freelance writer living in Ottawa.

Source http://www.canada.com/ottawacitizen/news/story.html?id=52a774d4-e81c-4afc-aae1-addb35c9cdc1