“Bringing Communities Together: Awareness Forum on Living with Fetal Alcohol Spectrum Disorder (FASD)”

Hamilton, Ontario, Canada

October 29-31, 2002

A few months ago, a doctor in our support group - FASworld Toronto -- who is also a parent, asked me a difficult question.

He asked me, “When did you really get FAS - not intellectually but in your guts, and in your heart?”

Whew-what a question!

After thinking for a while, I told him it was in October, 1977 -- a little over five years ago. Colette was 17, a squeegee kid, living on the street, and addicted to crack.

Earlier that year, I had seen an item on TV about Fetal Alcohol Effects, and thought that might be an explanation for her learning and behaviour problems. We had managed to track down family members who confirmed that her birth mother had binge-drunk three weeks on and three weeks off throughout all three of her pregnancies.

I’d also managed to get an appointment for her with a geneticist outside Toronto, who occasionally diagnosed FAS. The problem was -- getting her there. Remember, she was a street person, wired on drugs, and would steal anything that wasn’t nailed down. We locked up our valuables and had her stay overnight -- then made the three-hour drive. We took along baby photos, an inch-thick file of psycho-educational tests, medical and school records, even letters and journals.

The geneticist didn’t look at any of this stuff. Instead, he measured Colette’s head and told us she was normal - that he didn’t want to diagnose her with FAE because that would give her an excuse for her bad behaviour.

And so we drove home without an official answer, although I knew in my head and in my heart that Colette had struggled lifelong with the effects of prenatal alcohol. Here’s some of what I wrote to my online friends:

I told my doctor friend that that is when I GOT the tragedy of FASD -- watching my seventeen-year-old daughter walk into the subway station, heading to a shabby flophouse to be with an addict boyfriend, because she had nowhere else to go.

As she slouched away, beaten and desperate, I wanted to call, “Wait! Come home!” I wanted to put my arms around her, wrap her in a warm blanket, feed her milk and cookies. But I knew I couldn’t -- she was destroying Brian and our older daughter Cleo, and me when she lived with us.

At that moment, I felt as if I were sending my four-year-old to the depths of Dante’s Inferno, and I seemed to feel my heart breaking because I had no other choice...

I told my doctor friend that was when I GOT it -- but I didn’t really GET it until a couple of weeks ago, when my heart broke again for a quite different reason...

To sum up -- for seven years - from the time Colette was 10 until 17 - we dragged her to a series of psychologists, psychiatrists, therapists, and counsellers - who advised us to improve our parenting skills. Even though we were doing the very best we could, and had few problems with our older daughter, Cleo, also adopted, we were an easy target for blame. Each of these professionals had a different theory for her learning and behaviour problems: we were too rigid, too laid-back, too negative, had too many expectations...one said the reason she acted out was that Brian and I didn’t fight enough. All we knew was, we loved her desperately, and were doing the very best we could, and our best wasn’t good enough.

Then I saw an item on CBC-TV about Fetal Alcohol Effects and went, “Aha!” We knew that Colette had been removed from her birth family at age eight months because of her birth parents’ alcoholism and neglect, and had always mentioned this to professionals we saw. But none had ever suggested that our bright, beautiful blonde daughter might have neurological damage resulting from her mother’s drinking in pregnancy. (Was she a victim of reverse stereotyping? Would they have suggested it if she had been of aboriginal background? Who knows?)

That TV item changed her life, and ours. We eventually did manage to get a diagnosis, outside the province. And we were able to help her, because we finally knew what we were dealing with. We were able to plug into an amazing worldwide community of support and knowledge.

I wrote a magazine article, “Society’s Child,” about this experience and it received the biggest response in the magazine’s history -- from as far away as Austria -- mostly from adoptive parents who wrote, “You have our child.” And I realized that we were just one family of countless thousands, all struggling to raise a child with the often-invisible disabilities of fetal alcohol damage.

Some of the correspondents were foster parents, step-parents, grandparents, aunts and uncles who were raising the child. Some were siblings.

They wrote about children with rages, unable to learn; runaway, addicted teenagers; young women who had become “exotic dancers” (a euphemism for strippers and prostitutes). They wrote about sons languishing in prison, and daughters who had had four or five babies by the time they were 21.

None of the adoptive parents had been told by agencies whether their children’s mother had consumed alcohol in pregnancy, and none had been warned of the possible results if she had consumed alcohol. “You get more information from the SPCA when adopting a pet than we were given with our child!” wrote a mother whose young adult son has frequently considered suicide.

The children’s behaviour seemed to break into two patterns. Some were like Colette -- bright and cooperative until they hit school, when problems began to erupt. Others caused trouble from infancy. .

Colette is now nearly 23, has two beautiful little children - and she didn’t drink in pregnancy.

In fact, by some miracle, she is not a drinker and has broken a cycle of alcoholism, abuse and abandonment that has gone on for generations on both sides of her birth family.

Also - miraculously - she has wisely recognized that she’s not great with birth control and she can’t cope with any more children, and she’s taken steps to prevent further pregnancies.

We were able to help her break this cycle because we finally knew what we were dealing with. This is why diagnosis is so important, the earlier the better...

And once we knew what we were dealing with, we stopped blaming her, and stopped blaming ourselves, and began to use strategies which have been developed over the past thirty years.

Y’know...it really doesn’t matter how we acquired these kids. Birth, foster, adoptive, step parents, extended family members - we all love these children passionately, and want the very best for them.

Since I saw that TV show in March, 1997, I have communicated online, by phone, and in person with hundreds of parents and caregivers, and our experiences are similar. To sum it up:

We and our children need a great deal of help from the community, but most of the time our community fails us. And when our community fails us...it costs all of us dearly.

Every week, we see stories in the newspaper that are Invisible FASD. For example, the young man who was arrested for stabbing the Jewish father of six to death this past summer - was a homeless drifter, addicted to drugs, who had grown up in the foster care system.

The people in Toronto’s Tent City weren’t there by choice: many of their stories indicated that they, too, struggled with FASD. The first Tent City Baby has full-blown Fetal Alcohol Syndrome.

And what about the more than fifty missing sex-trade workers in Vancouver, believed to have been murdered at that horrible Pig Farm? Almost every one has a family history that indicates a strong possibility of FASD. They were adopted, or foster children, or grew up in alcoholic families... The forensic work alone will cost the taxpayers $20 million...that’s several hundred thousand dollars for each of the missing women. You can’t put dollars on the pain of the people who loved them.

These tragedies didn’t have to happen. All of those people - the alleged murderer, the Tent City inhabitants, the missing sex trade workers, were children once, as cute and precious as Colette at age four. But the community failed them.

When I talk about community, I mean friends, family, neighbours, schools, institutions, and governments. And when we and our children fail to receive adequate support, families are at high risk of breaking down.

The University of Washington’s Secondary Disabilities Study, 1996, should be required reading for every person in this audience. This important study indicates that individuals with FASD are at high risk of what the researchers call “secondary disabilities.” Secondary disabilities result when the complex needs of people with FASD are not met.

Here are some of the secondary disabilities: school drop-out, delinquency, addiction to drugs and alcohol, unemployment, homelessness, crime - and bringing more alcohol-affected children into the world.

The chief protective factors are diagnosis before age six, and a stable, nurturing family.

But again, we families are not getting the support we need. Over the past few years, the federal government has invested many millions of dollars into strategies relating to FASD but almost all of this funding has gone to professionals. Very little has gone to help the families who are raising these kids.

Most adoptive parents of children with FASD are frustrated, exhausted, and burned-out. Last year, two adoptive parents on my on-line list committed suicide. One of these mothers took her child with her.

Over the past three years, among the Toronto parents we work with, several have returned their adopted children to CAS. They did this with broken hearts -- but their mental and physical health was in danger. Often siblings were in danger as well.

The Ontario government has some legislation that is destroying many adoptive families. It says that after two years of temporary wardship, a child must be made a Crown Ward. This bill was designed so that little children would become available for adoption, rather than growing up in foster care.

But I’ve known several adoptive parents whose adolescent youngsters are in care of CAS because the families can’t cope with their acting-out behaviour. These parents love their children. Yet, in order to protect other family members, after two years, they must sign a court document formally abandoning their child.

This week, a woman in our support group will have to sign such a document indicating that the adoption has broken down. She has been spending weekends with her child, and is not in a position to give this child the structure and supervision an adolescent needs, but she’ll never stop loving her child. Ever.

This child is twelve years old, and mentally and emotionally about eight.

I can’t imagine what it feels like to be a child whose parents have formally abandoned you...

We parents need innovative thinking from bureaucrats who are drafting policies. Investing in children with FASD and their families could save this country billions of dollars down the road.

I’ve seen statistics that indicate that federal and provincial revenues from taxes on alcohol - excluding sales taxes - total $3.2 billion annually.

What if just 5% of that money -- $150 million per year went to help those approximately 300,000 Canadian children and adults struggling lifelong with prenatal alcohol damage, and their families. They are collateral damage of the alcohol industry!

We’re spending far more on them anyway - on criminal justice, social services, and mental health. For example, what if we didn’t incarcerate young offenders with FASD - it doesn’t work anyway - we could add another $125 million to the pot.

Instead of wasting money fixing mistakes, let’s prevent them from happening.

I’ve got lots of suggestions, but here are six...

First, we need every doctor, psychiatrist, psychologist, teacher, social worker, police officer, lawyer, judge, probation officer, politician and public servant to be as knowledgeable about FASD as you will be when you leave here tomorrow.

We need help for exhausted parents, who are on the front lines dealing with the effects of prenatal alcohol 24 hours a day, seven days a week. In Germany, foster parents get one full month of paid respite -- but even a few hours per week would be helpful.

We need effective, long-term residential housing for those adolescents with FASD whose behaviour makes it impossible for them to live at home, and for adults with FASD who now make up a significant number of Canada's homeless.

We need permanent federal disability pensions for adults with FASD, to enable them to work part-time in entry-level jobs, but still live decently.

We need accessible alcohol and drug rehabilitation programs for adolescent females (such programs are currently almost nonexistent), and for all women of childbearing age.

We need to screen all incarcerated offenders for FASD, and develop special

programs for their learning and behaviour problems. And bring back those halfway homes - they need the structure and supervision!

Friends and family often don’t understand why adoptive parents don’t just disown these kids. But people with FASD have many wonderful qualities. They can be charming, funny, affectionate, gifted with animals, and excel in art, music, sports, or computers. (Colette is a whiz at programming a VCR or hooking up digital cable.) They’re fun to have around -- Some of my best times are spent with Colette shopping at garage sales.

Here’s an update on Colette. Her partner of five years is even more damaged by prenatal alcohol than she is. They met while living on the street. Brian is trustee of her disability support, and this ensures that rent and utilities get paid, and groceries get bought.

Because of their disabilities, Both Colette and her partner will always have great difficulty hanging on to any kind of job -- or handling money. She grew up in an affluent neighbourhood -- and now lives in a grungy walk-up flat over a convenience store in a strip mall. Brian and I do what we can to help.

We drive her kids to and from subsidized daycare, and to doctors.

We read to them, play with them, worry about their nutrition and whether they’re warm enough, and fill up our backyard with toys. We really enjoy the times we spend with our grandchildren - these are magic moments, and we’re all happy to be together.

A couple of weeks ago, Colette proudly gave us photo portraits of our grandchildren, taken at the daycare centre. Brian looked tenderly at the pictures of our bright, handsome, three-year-old grandson, and pixyish red-haired granddaughter, age 16 months. And he said:

“Isn’t it amazing how two people with so many problems can have such beautiful children?”

I said, “Well...it’s in their genes. If they hadn’t been exposed to fetal alcohol, they might have met at university. Colette would have been studying to be a veterinary technician, and he would have been studying computer science. And they would have had those beautiful children..”

And then it hit me.

They love their children dearly, and like all parents, are doing the best they can.

But they will never be able to give them the material things that middle-class children take for granted.

They will always live on social services, always be under-housed, never own a car, never take the children on trips, or able to afford lessons in sports, dance, or music. Their neighbours in this low-cost area are alcoholics and drug dealers and have a habit of dropping in - not the kind of people you want around innocent young children. They’ll run out of food before the end of the month. They will never be able to help them with their homework, or deal with their kids’ teachers. As for saving money for their children’s post-secondary education - impossible.

And yet - they are doing the best they can.

But unless something changes, the community will fail these bright, beautiful children -- just as it failed their parents.

And that is when I REALLY GOT the tragedy of FASD.