Andy was nine years old when he and his half-brother Eddie first went to live with their foster parents, Sharon and Paul Jackson.
At the time of the placement, their social worker described Andy as being like a “lively puppy”. In reality, he was grossly unkempt and dangerously underweight. He wasn’t toilet trained, couldn’t use a knife or fork, was unable to read or write more than his name and had a poor memory and limited learning skills. His knowledge of the world beyond the abusive home from which he came was virtually zero.
Eddie, although five, could not walk or talk and would, instead, crawl around on all fours, barking. They bore all the hallmarks of the “feral neglect” Sharon says they had endured before coming to them.
But their developmental and behavioural issues hinted at an even more fundamental and complex problem.
The social worker who first handled their case had mentioned that Andy may have a condition called FAS or foetal alcohol syndrome.
That was the first time either Sharon or Paul had heard the term and it would be another four years until they’d hear it again. When they did, it came via the medium of breakfast television, not from the plethora of social workers and health professionals with whom they were in regular contact.
“Many mainstream doctors, teachers and other professionals have no awareness of it,” explains Paul.
But watching that morning television segment about foetal alcohol spectrum disorder (FASD), an umbrella term used to describe a series of conditions resulting from exposure to alcohol while in the womb, Sharon says, was like listening to a list of Andy’s and Eddie’s symptoms being reeled off.
Getting an official diagnosis in a country with only one specialist FASD clinic, however, wouldn’t prove so straight-forward. When it eventually came, some years later, Sharon and Paul were already caring for three more children with FASD – siblings Honey*, Harry* and Louise*.
Honey was five and Harry four when the Jacksons first began the process of fostering them. But as the slow wheels of bureaucracy turned, their birth mother fell pregnant again. Sharon and Paul were told that they’d only be able to foster Honey and Harry if they also took on their new sister, Louise.
Although social services didn’t mention it, all three showed signs of FASD.
“We’d never had a baby,” Sharon says, explaining the trepidation with which they took in the children. “At eight months, Louise couldn’t lift her own head and wouldn’t sleep. She’d only ever sleep for an hour at a time.”
Andy and Louise, the oldest and youngest of Sharon and Paul’s children, were eventually diagnosed with FAS, the most easily recognisable of the five conditions that fall under the FASD umbrella because of the distinct facial characteristics, including small eye openings, thin upper lips, flattened philtrums, the groove in the upper lip, and low ears, that are among its defining features. The other three children were found to have alcohol-related neurodevelopmental disorder or ARND.
A combination of Sharon and Paul’s persistence and, in Louise’s case, a strange stroke of luck led to the diagnoses, although it took many years and numerous tests to get there.
Louise has regular emotional meltdowns, sometimes as often as twice a day. These tend to take one of two forms.
The first is defined by excessive sadness; the second by anger and aggression. Both end up with her being inconsolable and expressing a desire to kill herself. By the age of seven, she had already begun climbing on to the roof of the family’s home and threatening to jump.
Then she had a meltdown at the doctor’s office one day. As members of the medical profession witnessed first-hand what Sharon and Paul had been trying to manage for years, Louise was immediately referred to a specialist. “They even asked us if we felt safe taking her home with us,” Sharon explains.
Thanks to a research project in which they participated, each of the five children now has a 50-page long diagnosis. And while that doesn’t alter the reality of their conditions, it can seem like a major achievement for parents who regularly report being made to feel as though they are the problem whenever they broach the topic of FASD with social services or medical professionals.
It can also be a small step towards getting the right medication. For a long time, none of the Jacksons’ children received any. This was a period that was so difficult that Paul now refers to it as “the lost years”.
The symptoms of FASD include physical disabilities, long-term growth problems and brain damage that can affect behavioural, cognitive and learning abilities. “Children and adults with FASD struggle every day to make sense of a world that doesn’t make sense,” explains Susan Fleischer, an adoptive parent and founder of NOFAS-UK , an organisation that supports people affected by FASD, on that organisation’s website.
“They can see the real world, but they have been robbed of parts of their brain or parts of their functioning, so they see what normalcy is and they see that they don’t fit in.”
The fact that individuals with FASD may have any combination of the symptoms to varying degrees of severity makes diagnosis particularly difficult. There were 252 cases of FAS diagnosed in England in 2013 but experts suspect the true figure may be in the thousands. Many cases go undiagnosed; others are misdiagnosed, often as autism.
“I learned that no one knows about FASD,” says Sharon. “And a lot of people say they have autism rather than FASD because at least then they get some help.”
But the failure to diagnose and misdiagnosis can have profound consequences, increasing the severity of secondary disabilities, such as isolation, school expulsion, addiction, imprisonment, homelessness, depression and suicide.
In fact, in the United States, it is estimated that at least 25 percent of the prison population has undiagnosed FASD and that of individuals with ARND between the ages of 12 and 51, 55 percent will be confined in prison, drug or alcohol treatment centres or mental health institutions.
A diagnosis often begins with the knowledge that the birth mother drank alcohol during pregnancy, but the associated stigma and the fact that many affected children are in the care system can make gathering this first level of information difficult. And this latter point can also contribute to an unhelpful stereotype of mothers of children with FASD as women who drank excessively during pregnancy. While this may be the case, it isn’t always so.
Much remains unknown about FASD, and the effects of alcohol on a foetus can vary wildly from one case to another. But while heavy drinking or binge drinking increases the risk, no amount of alcohol has been proven safe.
In fact, it may be as much a matter of timing as amount. A confluence between alcohol consumption and certain stages in foetal development could explain the severity and particular symptoms of individual cases, but doctors just don’t know enough to be sure. And that is why organisations like NOFAS-UK recommend that women avoid alcohol entirely during pregnancy.
What is known, however, is that when a pregnant woman drinks, the alcohol in her blood passes through the placenta into the blood of the foetus. Without a fully developed liver, the foetus is unable to filter out the toxins in the way an adult would.
Today, Andy is 24, Eddie is 19, Honey is 16, Harry is 15 and Louise is 12. It has been a long, hard struggle for the family and one that is unlikely to improve, for as Paul explains: “Brain damage from prenatal alcohol consumption is for life.”
Andy still has a mental age of around nine or 10 and an IQ of about 50. He can be emotionally needy and jealous of his siblings, although he is never aggressive. He is able to learn facts and figures but tends to regurgitate these and to steer every conversation to a few subjects about which he feels confident speaking, regardless of the interest of the listener.
Mundane day-to-day things like remembering to take his keys with him when he goes out or turning off the water, however, can be problematic, and despite enduring years of expensive and painful dental and facial surgery, he must be repeatedly reminded to brush his teeth.
Like Andy, Eddie regularly locks himself out of his flat, requiring either Sharon or Paul to come to his assistance. But, unlike Andy, Eddie’s outbursts can be violent.
When he was nine years old, he tried to strangle Louise and had to be pulled off the then-two-year-old. When asked why he’d done it, he explained that she’d thrown something on the floor despite being told not to.
His social worker concluded that he was a danger to himself and others. But when Paul and Sharon applied for funding to build an extension to their home where Eddie could be accommodated away from the other children, their request was denied and they were advised to put him back into the care system.
Then there was the time they received a phone call telling them Eddie had smashed through 12 windows, been arrested and taken to hospital.
“You live hour by hour,” Sharon says. “You get the phone call and the adrenalin kicks in.”
You quickly realise, she explains, “that you don’t know your own children”.
Today, Eddie appears to pose more of a risk to himself than others. He is finding it particularly hard to cope at the moment and Sharon and Paul suspect that he has developed some form of eating disorder where he will go without food for a long time but then binge eat sweets for energy.
At 16, Honey cannot absorb information or follow instructions and, Paul explains, will lie constantly and blame others for her actions. That may sound like pretty typical teenage behaviour but it’s far from it. Hers isn’t an intentional attempt to deceive; it’s simply that her brain is incorrectly wired and, like many FASD sufferers she is unable to associate actions with consequences. That, of course, can present all sorts of dangers.
Of Harry, Paul explains: “He flatters to deceive in many respects. He’s economical with words, so regular people find it hard to gauge his inability to understand things. He’s bossy and confident despite this and is a natural leader, so his shortcomings often go unnoticed.”
But this apparent normality can cause problems, allowing him to get into situations he can neither understand nor handle. Like all of the other children, he has been in trouble at school and, like the others, has been excluded at times.
His transgressions are sometimes severe. When he was about seven, he was accused of inappropriate sexual behaviour, and in the past he has threatened to stab Sharon and to burn the house down.
Louise still has regular psychotic breakdowns, featuring suicide threats and self-harm in the form of head banging. By the time she was 10 years old, she was already on anti-psychotic medication. When her weight started to balloon, she was taken off this and put on something else.
Then her facial tics started to get worse, her tongue began to hang out and she complained of pain in her hips. It was only when Sharon mentioned this in a Facebook message and somebody responded, that she realised the seriousness of what was happening and rushed Louise to hospital. The combination of her condition and the medication had been causing her to have small seizures for months.
She is now on a drug intended for people with ADHD (attention deficit hyperactivity disorder) that is also used to treat hypertension in adults. But the potential side effects of missing a dose are such that Louise must be rushed to hospital if she is as little as three hours late.
With mainstream schools unable to cope with her, and her with them, Louise is currently being home-schooled. A school would receive somewhere in the region of $14,000 a year for teaching her; Sharon and Paul receive nothing.
That Louise sleeps very little without medication has been a long-running problem for the family, but her brain simply doesn’t produce the natural sleep trigger melatonin. It’s just another factor that contributes to their general exhaustion.
“You go on auto-pilot,” Sharon explains. “You start losing emotion. We go from one disaster to another. The children become your life; you don’t have any friends and you don’t go out.”
For a topic that had previously garnered little attention in the UK, earlier this year FASD experienced a surge in interest, becoming the subject of a handful of news stories and a few concerned op-eds. The reason: a local authority had applied to the government’s criminal compensation authority on behalf of a seven-year-old girl in its care. The girl has severe FASD and the local authority argued that she should receive a compensation payout as she had been a victim of a crime – her birth mother’s excessive drinking, despite being warned of the potential dangers, during pregnancy.
Many worried that this would set a dangerous precedent by potentially criminalising women who might be better served by help and support and by conferring personhood on a foetus, thus opening the gates to further measures to assert control over women’s bodies during pregnancy. How, some asked, could abortion be permitted if harming a foetus was deemed criminal?
Birthrights, an organisation that seeks to improve women’s experience of pregnancy and childbirth, was particularly alarmed. “The UK legal system has … robustly protected individuals in our society by accepting that a mentally competent woman must always be the final decision-maker on what happens to her body,” explains Rebecca Schiller, the organisation’s co-chair. “Setting a precedent that allows a person to be criminally prosecuted for something that would not be a criminal offence if they weren’t pregnant is disturbing.”
Schiller points to the US as an example of how far this could potentially be taken. “In the US this issue is very real,” she says. “Pregnant women are being criminalised using legislation that has privileged foetal rights. This hits women in the lowest socio-economic groups, women of colour and victims of domestic abuse hardest. This criminalisation is part of a strategic drive to strip away pregnant women’s rights in an attempt to restrict and remove their access to abortion.”
Opinion was divided, even among those who care for children and adults with FASD, and the overwhelming sense was that the case was an imperfect attempt to find some way of reducing the number of children born with what is an entirely preventable condition, while simultaneously securing the financial support for those already living with it.
Even many of those in favour argued that it wasn’t an ideal solution, but suggested that for people who have fought for years to raise awareness, secure support and sometimes simply make it through the day, it felt like some kind of acknowledgement at least.
The Jacksons are clear that while they want drinking alcohol during pregnancy to be illegal, they don’t want women to be criminalised for doing so and this was never about putting birth mothers in prison or denying help to those struggling with addiction.
Andy, who is now an FA-accredited football coach for disabled children and those from disadvantaged backgrounds, spoke out about his support for the case. He says he felt he needed to because if he hadn’t “then nobody would hear about what it is like to live with FASD, and that needs to be heard”.
“Everybody is talking about the birth mother and her rights, but who is thinking about the unborn child?” he asks. “You wouldn’t give a toddler or a newborn baby alcohol, so why would you give it to a foetus? We don’t want to send anybody to prison, but this time next year, there could be no new cases of FASD; it’s entirely avoidable.”
The Court of Appeal, where the case was heard, eventually rejected the local authority’s bid, ruling that as a foetus was not a “person” it couldn’t be unlawfully harmed.
It’s hard not to wonder whether FASD hasn’t fallen through the cracks between several more fashionable causes and vested interests. The conflation with the abortion debate served to take the focus – and, to some extent, the voice – away from those living with the realities of the condition. And with so many unknowns, it has been relatively easy to dismiss or at least downplay the significance of this problem. But for families like the Jacksons the absence of confirmed numbers and a clear consensus in no way diminishes the reality of their daily battle.
“Day to day is tough because it requires us to be the ‘external brain’ for all five children,” Paul explains. “Because their logic, reasoning and social knowledge is so limited, allied with their short-term memory problems and impulsiveness, each day throws up a dilemma for one, two, three or all of them.”
“And all of their problems overlap. There have been hundreds of incidents, major and minor, with each of them over the past 12 to 15 years. It’s constant and unrelenting. It has tested us emotionally and physically to our limits and beyond.”
As well as trying to get their children through each day, the Jacksons are attempting to help others in a similar position. Sharon has recently co-founded a respite and support service for other families living with FASD and other high spectrum learning disabilities.
But as they do this, one concern looms large.
“Our biggest worry,” Paul explains, “is how will they cope without our help through old age or death? Social services will doubtless home them in sheltered accommodation with little or no real support.”
Their best hope is that awareness will have been sufficiently raised by then that there will be specialist FASD nurses in place within such accommodation to help out. But if the recent debate is anything to go by, that possibility seems a long way off.
So the Jacksons continue to “hope for the best, but plan for the worst”, for however much they give of themselves – physically, emotionally, psychologically and financially – they cannot undo the damage that was done before their children were even born.
* Some names have been changed
This article first appeared in the February 2015 issue of the Al Jazeera Magazine.