Mothers of kids with fetal alcohol syndrome speak out

When Natyra Teske was 18 years old, she found out she was eight weeks pregnant. Still in high school in Alberta, Canada, she and her boyfriend were shocked and nervous – but excited.

They stocked up on baby gear, followed every pregnancy guide to the letter, ate well, rested up. And, like most expectant moms, Natyra stopped drinking alcohol immediately.

But still, from his birth in 2001, their son Nico had severe developmental problems that required round-the-clock attention. He would scream when touched. As he grew, he would pull out clumps of his hair, punch through walls, and even threaten suicide. Doctors suspected autism; no tests showed a match.

Last October, with Nico aged 16, doctors finally reached a staggering diagnosis: he has fetal alcohol syndrome.

It is a story all too familiar for the thousands of families across the United States – either biological parents or adoptive parents – who have struggled to get a diagnosis for their child’s disability because doctors assume that condition belongs to a certain sector of society. 

If you meet a child born poisoned with alcohol, what comes to mind? Chances are, an image of an alcoholic mother and a broken home. 

As these six women show, that is not always the case. But the stigma is fierce, and explaining their child’s crippling condition is complicated, to say the least. 


‘Everyday is survival for both parent and kid’: These are six mothers who are full-time carers of children with Fetal Alcohol Spectrum Disorders (FASD).  Natyra (left) barely drank during her pregnancy, Amanda (center) says her son’s impulsivity lies at the root of his problems, Tina (right) adopted her son from Siberia but also had an adopted brother with the disorder

Vicki (left) grapples with raising a teenage girl who has FASD, Megan (center) took custody of her sister’s biological son and Crystal (right) has two daughters with the disorder but who lie on opposite ends of the spectrum

Few people – even doctors – understand the symptoms of Fetal Alcohol Spectrum Disorders (FASD). Treating it is a round-the-clock occupation.

Most sufferers are first diagnosed with autism, ADHD or bipolar disorder because their behaviors are so similar.

Many – but not all – also have physical symptoms. They have a thin upper lip, smaller eyes, smaller heads, stunted growth, and a damaged central nervous system, which causes issues with learning, memory, attention span, communication, vision, or hearing.

These children are prone to pulling their hair out, breaking furniture, and covering their ears and rocking back and forth in reaction to loud noises.

It means they need incredibly strict routines to prevent violent outbursts.

With little public knowledge of how the disorder manifests itself, there are few resources to integrate children as they enter society. According to one report, 50 percent of individuals with FASD have a history of confinement in a jail, prison, residential drug treatment facility, or psychiatric hospital.

Their mothers are equally misunderstood.

Amanda and Crystal both adopted children not knowing the birth mother drank; Tina, Megan and Vicki all adopted children knowing they had been prenatally exposed to alcohol.

One thing in common? They are full-time carers just like mothers of children with any other disability.

Another? They all describe the same reaction from people who hear of their child’s condition: almost exclusively, people assume FASD is the byproduct of uneducated, poor, young, irresponsible mothers. The assumption couldn’t be more wrong. 

A study from Vanderbilt University last month found that pregnant women who are white, college-educated, relatively older and have higher incomes are the most likely to consume alcohol during pregnancy, compared with other demographic groups.

‘Universally, these women have been identified as alcoholics or sluts, which has permeated all the different strata,’ said Diane Malbin, the executive director of the nonprofit organization FASCETS, which offers workshops and consultations for guardians and educators of children with FAS.

‘And it has created this culture of fear where women who need help are too scared to come forward.’

In exclusive interviews with Daily Mail Online, they shared their emotional roller coasters, their daily struggles and their fears for their children’s futures.

‘I stopped drinking alcohol as soon as I found out I was pregnant – and my son still has FASD’: Natyra describes 16-year battle to get a diagnosis for Nico who can’t stand music and melts down screaming at the smell of Chinese food

Living more than a decade without a diagnosis for little Nico, Natyra had started to do her own investigating – namely through Dr Google.  

She came across FASD. He had all the behavioral symptoms. But she couldn’t believe it.  

‘I only drank until I found out I was pregnant at eight-and-a-half weeks and then I stopped,’ she said.

It turned out that was enough.

There are 50,000 teratogens – pre- and post-natal agents – which can affect a fetus’s development. Alcohol is one of them.

The substance in the mother’s blood passes straight to the baby’s blood. Ethanol, found in most alcoholic beverages, is a toxic substance which can kill cells in developing fetuses.

Natyra Teske, from Alberta, Canada, found out she was pregnant when she was eight-and-a-half weeks pregnant and immediately stopped drinking. Her son Nico (left, far left, aged around 10 years old with his mom and sisters; right, far right, last year aged 16) still wound up with an FASD diagnosis, but years later because doctors didn’t think to test for it

Alcohol also alters the structure of cells, reducing myelination (their protective coating process) and the number of interconnections among cells.

Prenatal development has two stages, the first being the embryonic stage that comprises the first eight weeks of development where the precursors of what will become organ systems are determined.

Alcohol introduced at this stage can have significant repercussions depending on the population of cells negatively affected, which can range from birth defects to miscarriage.

The greatest impact is behavioral. Changes at the cellular level affect brain design, impacting memory storage, processing speed, the ability to analyze, or to make decisions.

Around 10 percent of FASD children are also born with physical symptoms – thin upper lips, smaller eyes, smaller heads – which makes their condition easier to diagnose.

That wasn’t the case with Nico (‘he didn’t have any of the facial features’). And because Natyra’s alcohol consumption had been so minimal, FASD wasn’t considered for years.

Natyra married when Nico was two, and her now-husband adopted him, treating him as his own son. 

It was around then that they started to notice that Nico wasn’t hitting some developmental milestones. His behavior went back and forth from worse to better.

When Nico (pictured, left, with his younger sisters last year; right, at home in Alberta last year) was younger, he would break items, punch walls, pull out clumps of his hair out and – on rare occasions – threaten suicide. He had many of the classic symptoms, such as developmental delays, sensitivity, learning disabilities but he was only diagnosed in October


Fetal alcohol spectrum disorder (FASD) is an umbrella term describing the range of effects that can appear in a person whose mother drank alcohol while pregnant.

Alcohol can cause problems for a developing baby throughout pregnancy, including before a woman knows she’s pregnant.

The CDC has identified 0.2 to 1.5 infants with FAS for every 1,000 live births in certain areas of the United States.

However, few estimates for the full range of FASDs are available.

Based on community studies using physical examinations, experts estimate that the full range of FASDs in the US might number as high two to five per 100 school children (or between two and five percent of the population).

Conditions can range from mild to severe:

  • Abnormal facial features (such as a smooth ridge between the nose and upper lip)
  • Small head size
  • Shorter-than-average height
  • Low body weight
  • Poor coordination
  • Hyperactive behavior
  • Difficulty with attention
  • Poor memory
  • Difficulty in school (especially with math)
  • Learning disabilities
  • Speech and language delays
  • Intellectual disability or low IQ
  • Poor reasoning and judgment skills
  • Sleep and sucking problems as a baby
  • Vision or hearing problems
  • Problems with the heart, kidneys, or bones

There are no tests to diagnose FASD, and therefore doctors must rely on physical or mental signs.

Typically what is looked for are abnormal facial features; lower-than-average height, weight, or both; and central nervous system problems.

FASD is a lifelong disability for which there is no cure.

There are many types of treatment options, including medication to help with some symptoms, behavior and education therapy, parent training, and other alternative approaches.

Nico exhibits many of the typical, now-recognized symptoms. Most significantly, his sensory profile is incredibly heightened.

He is sensitive to sounds – music can’t be played too loudly, what would be considered background music for most of us – and is so sensitive to smells that some aromas can agitate him.

‘We used to go to the West Edmonton Mall because it was nice to walk around there. And there was a Chinese market and every time we walked by, he would have a meltdown. He would cover his eyes and ears, he just couldn’t handle it.

‘To this day, every time we drive by, he goes, “Ugh, it’s so disgusting”.’

Nico’s clothing has to be layered because his skin is sensitive to certain fabrics, such as wool. He has a lot of repetitive behaviors, whistling in particular.

‘There was a lot of guilt, a lot of “Why isn’t anything we’re doing working?”,’ she said. 

‘Now we know why.’ 

When a child has been prenatally exposed to alcohol, their central nervous system can be under-developed.

In able-bodied humans, the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. But in children with FASD, their senses don’t create the proper responses. 

Natyra says that sometimes it can be exhausting for her, her husband and Nico.

‘It gets tiring to be his external brain all the time,’ she admits.

‘We call it 50 First Dates,’ she says, referring to the Drew Barrymore movie where the main character’s memory gets wiped every day. ‘He’ll constantly forget to shut doors or take his medication. And we have to think, “Is he giving us a hard time or having a hard time?”‘ 

Teaming up with a respite worker has helped calm a lot of Nico’s tendencies. He likes engineering and builds models, which is a way to expend his energy. He also does maintenance work on group homes such as mowing lawns or other forms of yard work.

And Natyra has begun attending support groups, specifically for FASD kids so she can interact with other mothers who are going through similar experiences.

But she was discouraged at the beginning. The stigma around drinking and pregnancy is so fierce that women rarely admit to being their child’s biological mother.

‘I’m a bio mom and there were a lot of caregivers and foster moms at the support group. Everyone was saying, “My adopted child”,’ she explained.

When she asked the leader of the group if she was the only birth mom there, he told her she wasn’t.

‘I thought, “Why are they lying?”, and I realized there’s a stigma surrounding talking about your child who has [FASD].

‘It’s not 100 percent preventable and there’s shouldn’t be fear in coming forward. It doesn’t happen the way it’s advertised and things can still happen.’

And Natyra says that it’s not necessarily that things have gotten easier as Nico’s gotten older. Many of his behaviors have carried on into his teenage years.

But she’s learned that his behaviors weren’t because he was trying to frustrate his parents, but rather because he was frustrated.

This, however, hasn’t eased all the ‘What ifs’. 

‘I still feel guilty sometimes and I think, “Wait a minute, I know women who choose to drink through their whole pregnancy”.

‘If bio moms come forward, it might help admitting they drank and it can lead to more proper diagnoses and better supports.’

‘Kind-hearted’ Chris, 16, is now in a detention center – like 50% of FASD kids ‘because police don’t understand they have a disability’

Amanda says her son Chris’s (pictured in 2008 at nine years old, with Amanda) impulsivity lies at the root of his problems – that it takes him a while to connect the dots and realize that something might not work for him

Like many other FASD sufferers, 16-year-old Chris Shannon is currently in a detention center.

More than 50 percent of people with FASD have a history of confinement in a jail, prison, residential drug treatment facility, or psychiatric hospital.

According to the Minnesota Organization on Fetal Alcohol Syndrome, this is largely because those diagnosed with FASD have specific types of brain damage that can lead them to getting involved in criminal activity.

Child sufferers in particular lack impulse control and don’t have the mental capacity to think of future consequences of their behavior.

They have difficulty planning, connecting cause and effect, and are vulnerable to peer pressures, so they may commit a crime just to please their friends.

Once the youths are in the legal system, they are vulnerable to confabulation (a disturbance of memory) and making false confessions.

They also often don’t understand the charges brought against them and can’t participate in their own defense.

Chris’s mother, Amanda, says his impulsivity lies at the root of most of his problems – that it takes him a while to connect the dots and realize that something might not work for him.

‘We’ve had to apologize to a lot of people for his behavior and it’s embarrassing,’ she said.

‘He’s not a bad kid. His heart is good, his brain just doesn’t work right.’

Amanda and Jack first took in Chris when he was two-and-a-half years old and adopted him at age three.

Though it may sound unbelievable, Amanda says, they didn’t read the documents they received from Texas Child Protective Services describing their new son’s biological background. 

‘I just didn’t want to think about it,’ she admits. 

And so, the file lay unsealed. But for years, the Shannons never saw a reason to go digging; they didn’t see anything different in Chris at first.

He didn’t have any of the physical features of a child that had been exposed to alcohol and his behavior as a baby was fairly typical. He was a little developmentally-delayed but would eventually catch up.

Everyone assumed he had ADHD.

It was when Chris turned nine that Amanda and Jack started to consider that something wasn’t right. Chris was having trouble remembering what to eat for breakfast and how to dress.

Amanda went back and looked through the folder from CPS and that’s when she saw ‘prenatal alcohol exposure possible’.

They immediately took him to their physician for tests, going through session after session of speech and occupational therapy to check for a number of other disorders. At age 10, doctors concluded he has FASD.

‘It was devastating to get that diagnosis, it’s just a hopeless diagnosis,’ Amanda said.

‘We received a small book but there was nothing in there. There was no one to help us or guide us. No training. It was all self-educating.’

With Amanda’s other three children, she said Chris got along with them very well at first.

But she said that Chris could see that they were progressing and he wasn’t, which would frustrate him.

‘He says, “Yes ma’am”, he helps to carry the groceries. He’s a good kid, he just didn’t know how to fit in,’ she said. 

‘And he did bizarre things. Anything kids would dare him to do, he did. Not fitting in was really hard for him.’

This behavior led to Chris being watched very closely for most of his life. It meant his parents and teachers watched him intensely, which in turn drove him to push back.


Children with FASD can fall on many ends of the spectrum and vary in symptoms. Experts generally break the spectrum up into three stages.

1. Alcohol-Related Birth Defects (ARBD)

The mildest of the stages, ARBD occurs in babies of women who drank lightly or moderately during pregnancy.

ARBD describes the physical defects linked to prenatal alcohol exposure, including heart, skeletal, kidney, ear, and eye malformations in the absence of apparent neurobehavioral or brain disorders.

2. Alcohol-Related Neurodevelopmental Disorder (ARND)

This also occurs in infants whose mothers drank lightly to moderately during pregnancy.

Specifically, children with ARND do not have the FAS facial abnormalities, but may have developmental disabilities including structural and/or functional central nervous system dysfunction (brain damage) with behavioral and learning problems.

3. Fetal Alcohol Syndrome (FAS)

FAS is recognized as the most severe form of the condition and occurs in women who drink heavily during pregnancy.

Kids with FAS have a distinct pattern of facial abnormalities, growth deficiency and evidence of central nervous system dysfunction.

He was prone to running away. Amanda and Jack spent so many nights awake worrying about Chris that they eventually put an alarm on his door and hid his shoes.

Eight years ago, they eventually moved from the city to the outskirts – which is very rural – where they live now, because they believed it would be safer for Chris.

‘There’s more animals out here, more things to do with 20 acres,’ Amanda explained.

‘He likes to dig so my husband made him a plot so he could dig as much as he wants.’

Their protective haven came with a caveat: if people in the city didn’t understand FASD, that was nothing compared to the countryside. But as Amanda came to realize, that didn’t mean Chris was the only one.

She started a support group. About 50 people are in a Facebook community of Texas moms. And between seven and 10 mothers meet once a month.

‘I knew I had to be around people that were going to meet face-to-face.

‘It’s a huge, huge help. I think having support has been a key to surviving,’ she said.

Despite the move, Chris’s impulsiveness soon kicked back in.

Stealing became an issue for him. A year ago, on a weekday night, he sneaked out of the house and stole an irrigation tractor – later telling his mother it was in the hope of driving to California to get rich.

It wasn’t the first time he had mentioned such an idea.

‘He told us that often like, “Oh, I want to be rich” or “I want to be a famous actor”,’ Amanda recalled.

‘It’s hard to accept the limitations of the disability but he has the mind of an eight-year-old and he’s not really in touch with reality.’

Chris drove for about two miles due west before he found a truck and headed nine miles to a friend’s house.

The friend’s parents first called the police thinking he was an intruder, and then called Amanda.

Chris was sent to a detention center in east Texas, but the charges have since been dropped considering it was his first and only offense and with the successful completion of a residential treatment center. He is expected to be home within a month or two.

The biggest worry Amanda has is what the future holds for her son. She doesn’t know if he’ll be able to get a full-time job.

‘How do you tell an employer, “He’s a really good worker, but you just need to watch him closely”?’ she wondered.

‘He’s an amazing kid, but it’s hard because there’s not a lot out there to help him.

‘They just need the right support system. He needs specific FASD treatment, not cookie cutter treatment.’ 

‘We cannot do what other families do, he NEEDS his routine’: Timothy’s Siberian mother gave birth drunk. Adoptive mom Tina knew how to raise him – because her brother had FASD too

When Tina Andrews and her husband, Adrian, adopted Timothy eight years ago in Ruckersville, Virginia – when he was two-and-a-half years old – they knew upfront that he probably had FASD.

His biological mother didn’t seek prenatal care in northern Siberia and showed up drunk at the hospital to deliver him.

And the signs began to show quickly enough. He has the typical facial features, his height is average for a 10-year-old (about 4’6?), and he eats well but has a hard time putting on weight.

When Tina Andrews adopted her son Timothy, now 10, from Northern Siberia in 2001, she knew she had FASD. His biological mother showed up to the hospital to deliver him drunk. For years, Tina doesn’t know how to handle Timothy’s symptoms of meltdowns, sensitivity and learning disabilities. Eventually she realized he needs a strict routine. It makes sense, she says: her brother, who also has FASD, thrived when he was jailed – and given a strict routine. Pictured: left in 2013, and right in 2016

He doesn’t quite understand space and boundaries and his sensory profile is also very mixed. Too much visual stimulation is bad for him and he’s very sensitive to sounds that Tina doesn’t even hear.

Timothy also has a very high threshold for pain tolerance. One day in school, he broke his nose and, although it was ‘blown up like a balloon’, he didn’t even notice.

For a long time, Tina said she struggled figuring out how to parent her son. He wouldn’t have a full night’s sleep and neither would she. Timothy would have a meltdown and so would Tina, and his school would have him in the principal’s office every single day.

‘He had leftover orphanage behavior,’ Tina said.

‘He would scream, throw things, and beat his head on the wall so that he had goose egg whelps.’

Much of what helped Tina understand her son’s (right) struggles came from her experiences with her brother Bill (left). Bill also has FASD and Tina learned the importance of daily routines for Timothy after seeing that Bill could only handle situations when they occurred at the same time on the same day every week

Navigating through it all, Tina said she had to learn what Timothy was mentally capable of doing, not physically capable of doing.

Now, when a noise is bothering him, they go searching for it together until they find the source or play music so he can’t hear it.

Like many FASD kids, routine and structure is extremely important for Timothy. There’s a morning routine, an afternoon routine and an evening routine. And although it’s vital, it means he can’t participate in other activities.

‘One Christmas, his grandmother wanted to take all the grandkids to see Santa and they would all dress in their PJs and listen to The Night Before Christmas and I knew right away that wasn’t going to fly,’ Tina said, laughing.

‘First of all, he knows that we’re not supposed to wear PJs out of the house so, if we do, it’s going to throw him off his routine.

‘Secondly, there will be too many people in too small of a space.

‘Three: the anticipation of waiting to see Santa Claus could cause a meltdown.

‘And four: he won’t be listening to the story, the auditory will bother him.’

So Tina has discovered ways that Timothy can still enjoy activities. They went to go see a production of A Charlie Brown Christmas designed for kids with special needs.

The show had dim lighting, two intermissions, earbuds and fidget toys: it was exactly what Timothy needed.

‘He loved it. He was thrilled with it,’ she said.

‘People will always ask me, “Why can’t you do something different?” The truth is we think of a break in routine as something fun, but for [FASD kids], it’s destabilizing.

‘It gets exhausting having to educate everybody. I have yet to go to a single anything, a doctor’s office or school, where someone completely gets it.’

Like many FASD kids, routine and structure is extremely important for Timothy. There’s a morning routine, an afternoon routine and an evening routine. Tina says: ‘People will always ask me, “Why can’t you do something different?” The truth is we think of a break in routine as something fun, but for [FASD kids], it’s destabilizing’

Much of what Tina learned about FASD was from her experience growing up with her foster brother, Bill.

Her parents were big on responsibility and accountability and struggled to understand that when they asked Bill to do things and he didn’t, it was often not a matter of him not wanting to. He was just physically not capable.

Tina says it wasn’t until their father retired that he realized Bill really wanted to do things, but often needed someone to be there to help him.

Then their father died and their mother, wrapped up in a new series of responsibilities, couldn’t stay on top of Bill.

One evening, he and some friends, angry that another friend went on a date instead of hanging out with them, broke into his garage and messed around with his bike. The friend’s parents called the police.

At the time, the other boys were 14 and 15 years old – but Bill was 18 and he was old enough to be charged as an adult.

‘Bill is a good kid,’ Tina said.

‘He has no interest in stealing anything, no interest in leading that kind of life, and he wasn’t mentally ready to be treated like an adult.’

After some missed parole officer appointments, Bill ended up serving jail time. But Tina says he was a model prisoner for one reason.

‘There’s structure in prison because there’s a schedule for everything and, because of that, he was able to succeed,’ she said.

Bill was let out early for good behavior and went to live with Tina so she could implement a schedule.

‘I told the parole officer, “Can we make his meetings at the same time and same day? Because he needs that routine”,’ Tina remembered.

‘Emails are sent to him and me and, when he gets back from the appointments, I’ve taped out sections of the desk so that he doesn’t lose things. Wallet goes here, keys here, papers from appointment here.’

She says Bill still has some problems with impulsivity and anger management, but he’s learning on his own to recognize the physical symptoms. He’s now working a job and is even engaged.

And this success gives her hope for Timothy.

Tina said: ‘There are sometimes struggles but, at the end of the day, my son has made me a better person and I want people to know not everything from FASD is bad.’ 

Megan gave up her own plans for motherhood to raise her nephew Jack after her sister drank through her whole pregnancy – and her fight to defend him will melt your heart

Jack Pollard’s birth mother, Karen, drank throughout her entire pregnancy.

So when he was three days old, his mother’s sister, Megan, got custody of him and – after two weeks in the NICU – took him to her home in Winnipeg.

The signs were immediately present such as the small eyes and small head circumference. In kindergarten, he received the official diagnosis.

Jack, now 11, is very sensitive to light and sound. He doesn’t like wearing sunglasses even if the sun is too bright. Sometimes he’ll wear baseball caps.

Megan says that although Jack can be loud himself, he’ll yell and scream and run into a corner if he starts to have a meltdown

The sensitivity extends to clothing.

Jack Pollard’s birth mother, Karen, drank throughout her whole pregnancy so, at three days old, his aunt Megan (pictured with Jack) received custody of him. Jack exhibits many classic FASD symptoms including sensitivity to light, sound and clothing. Megan says Jack is also on medication for ADHD and Tourette’s

‘We’ve gone through 10 to 20 different pairs of snow boots because of the sensitivity,’ she said.

‘He likes them in the store but then we get home and he has a huge meltdown and they have to go back.’

Jack is on two different medication for ADHD – Concerta and Intuniv – to be more focused, although the medication wears off faster when the child has FAS because they tend to be more easily distracted by extraneous stimuli.

During childhood, 60 percent of children with FASD have ADHD, which has been found to be a secondary disability associated with the disorder.

Jack takes his medication between 9am and 10am. For someone with ADHD and no other problems, the medication wears off at 4pm. But for Jack, it wears off at 2pm.

He’s also on medication for an advanced form of Tourette’s – his most recent bout has been random swearing.

Megan says that Jack can also be more careless than most children. She said she’s had to repair his iPad screen between five and six times because he is prone to breaking them either by smashing or stepping on it with his feet.

What he responds really well to are animals. The Pollards have a family dog for him – Sundae, an Australian Shepherd. She lies on Jack to help him go to sleep, working in the same way a weighted blanket would.

And if he starts getting too rough, she’ll go into the other room until he calms down.

Jack can get exasperated, however, with the largest dog, a Presa Canario named Tikka.

Megan says that Jack has been denied funding for school because he seems be doing well despite his learning disabilities. ‘[Educators] need more knowledge because it needs to be a recognizable disability. It’s vital those get proper training because it’s a spectrum like autism,’ she said

‘She’s not as matured as the other dogs, she’s more hyper and Jack can get rough with her.

‘He doesn’t mean to, but he doesn’t know how to express his frustration.’

Both Jack’s biological mother and father passed away within the last year, from a fire and a drug overdose, respectively. Although he wasn’t close to his birth mother, he was close to his father.

‘His grief is yelling and screaming,’ Megan said. ‘But he is loud regardless,’ she admits.

With the passing of both parents, Megan is on the road to adopting Jack.

‘I think this is the best thing for him. Sometimes the birth parents aren’t the best parents. He understands that he came from Aunt Karen’s tummy but that he’s my son.’

According to Megan, she says she’s come across more than enough parents, schools, and guidance counselors who don’t have enough knowledge of FASD to help.

‘We’ve been denied funding for school because he seemed to be able to do things on his own even though he has an individualized education plan,’ she said.

‘They need more knowledge because it needs to be a recognizable disability. It’s vital those get proper training because it’s a spectrum like autism.

‘These children can be loveable and early intervention is key. These kids can learn routines. My son is a handful and, yeah, sometimes I wish he didn’t have FAS, but I love him.’

How does FASD happen in a pregnant woman?

There are 50,000 teratogens – pre- and/or post-natal agents – which may affect development in a baby. Alcohol is one of them.

The substance in the mother’s blood passes straight to the baby’s blood. Because alcohol is technically a toxic substance, it can kill cells in developing fetuses.

Alcohol also alters the structure of cells, reducing myelination (their protective coating process) and the number of interconnections among cells.

Changes at the cellular level alter how cells function. These and other changes in brain design affect memory storage and retrieval, processing speed, ability to abstract, analyze, make decisions, and other processes.

The type of damage that occurs depends on which part is developing at that time.

The brain is continually forming, so it can be damaged at any stage of pregnancy.

In the first three months the organs are developing. So, this is the time when the heart, eyes, and kidneys might be harmed.

Later, when the fetus is growing fast, alcohol can slow this growth down.

Because these are physical changes, FASD is by definition a brain-based, usually invisible physical disability with behavioral symptoms.

The CDC warns that: ‘There is no known safe amount of alcohol use during pregnancy or while trying to get pregnant. There is also no safe time during pregnancy to drink. All types of alcohol are equally harmful.’ 

‘I’ll physically help to change her underwear and apply deodorant’: Vicki describes the struggles of raising a teenage daughter with FASD 

When Vicki Cocco adopted Isabella from the Ukraine and brought her home to Ontario, Canada, she was told that she had been prenatally exposed to alcohol, but she didn’t know the extent.

At two years old, she had the physical features such as the thin upper lip and narrow eyes, and a diagnosis of FASD didn’t follow long after.

Isabella is now 13 years old and, while Vicki hasn’t dealt with too many behavioral problems, she’s currently learning how to navigate raising a teenage daughter with the disorder.

‘She stomps her feet, says, “I hate you” because we don’t let her do whatever she wants, mostly typical teen behavior,’ Vicki said.

‘Right now, she’s in a swearing phase. And mimicking behavior. We’re trying to work on social cues.’

Isabella Cocco, 13, (right) is part of the 10 percent of children that have classic FASD facial features including narrow eyes, thin upper lip and a small head circumference. Behaviorally, her mom Vicki (left) says issues have emerged as she hit her teenage years. ‘Right now, she’s in a swearing phase. And mimicking behavior. We’re trying to work on social cues’

Isabella has friends at school, but that’s where the hallmarks of her condition emerge. As with many other FASD kids, she has trouble getting her head around social etiquette structures.

‘They’ll text at night and she doesn’t understand that when someone says they have to go, they really have to go.

‘They’ll say, “I have to go now” and she’ll reply back, “What are you doing?” It’s easy for teens to not understand why she’s doing that.

‘She just got into social media so we’re trying to teach her that being friends on social media doesn’t mean BFF.’

Puberty – and all the hygiene problems that come along with it – is another minefield of daily obstacles that goes far beyond the pale of what most other parents have to deal with.

‘Isabella sometimes forgets to change her undergarments so we’ll take a picture to remind her or I’ll physically help her change.

‘And we have to remind her to put deodorant and not just in the morning. They’re teenagers, they get smelly, but she doesn’t understand.’

Ultimately, even though Isabella is technically an eighth grader, her brain is at a third or fourth grade level.

But while that disconnect has been a family issue until now, Isabella is now growing up, becoming more and more independent – and communicating her condition to others is complex at best.

‘People think she’ll grow out of it or it’s just a behavioral issue or she’s acting silly and immature,’ Vicki said.

‘They don’t get that it’s a brain injury and sometimes it’s frustrating because you end up sounding like a broken record.’

At Isabella’s former school, she would randomly run up to people and hug or kiss them and people wouldn’t understand that there was a behavioral problem.

And even though Isabella has an Individualized Education Program, (a written document developed for each public school child who is eligible for special education), teachers often mistake what she is capable of comprehending.

‘At school, they expect Isabella to be able to tell time on an analog clock. That’s never going to happen. If we get her a watch, it’ll be digital.’

Her mother, Vicki, says that although Isabella doesn’t have many of the typical FASD outbursts and meltdowns, she struggles with memory and so Vicki had to help her as she goes through puberty. She said: ‘Isabella sometimes forgets to change her undergarments so we’ll take a picture to remind her or I’ll physically help her change. And we have to remind her to put deodorant and not just in the morning. They’re teenagers, they get smelly, but she doesn’t understand’

For now, Vicki has found some methods to occupy Isabella’s boundless attention. She attends a camp every summer called Camp Unity – it’s designed for FASD children to fill the gap in learning caused by school’s summer break.

She also has a service dog, a chocolate Labrador named Shala. When Isabella ‘gets silly’, taking Shala for a walk will help to calm her down.

Isabella will be attending high school next year and, although the school has been informed of her condition and teachers have even received FASD training, there are still concerns.

‘It’s a worry of safety mostly, wondering if she’ll be lured off the school site,’ Vicki explained.

‘We’ve explained to her she’s not supposed to go off with people she doesn’t know. But some days she acts like she has it and other days she doesn’t.’

Being a mother of a child with FASD is a lifetime of staying one step ahead and Vicki makes sure she’s constantly ahead of her daughter.

‘It’s almost like a snow plow removal. We’re removing any obstacles that could get in her way,’ she explained. 

‘Both of my daughters have FASD – but their conditions are COMPLETELY different’: Crystal describes juggling kids on both ends of the spectrum

When Crystal Stringham brought her daughters home from the hospital in Hooper, Utah, in 2003 and 2004, she had no idea they’d been exposed to any substances.

It was only when her oldest daughter, Maycee, was around three or four years old that she and her then-husband looked through her adoption files.

‘She just had a lot of behavioral struggles and she was tiny, tiny, tiny,’ Crystal said.

‘It was right after Jentri [our youngest daughter] was born, and we thought, “Is there something more going on than we were initially told?”‘

As it turned out, Maycee’s biological mother had filled out a questionnaire admitting she had drank while pregnant. In Jentri’s case, her birth mother only admitted taking methamphetamines while pregnant.

At the same appointment eight years ago, Maycee and Jentri, now 14 and 12, were both diagnosed with FASD.

When Crystal brought home Maycee (left) and Jentri (right) from the hospital in 2003 and 2004, respectively, she didn’t know that either had been exposed to alcohol prenatally. The girls didn’t receive their diagnoses until 2012 (pictured in 2007)

Crystal and her ex-husband share custody of the girls, but they currently live with her and her wife, whom she married in 2013 and has a three-year-old son with. Crystal says both of her daughters are ‘really good big sisters’ (pictured left and right in 2013)

Crystal and her husband divorced in 2012 and, although they have shared custody of the girls, Maycee and Jentri currently live with her. She married her wife, Talona, in 2013, who gave birth to a baby boy via a sperm donor the following year. 

Their unconventional family couldn’t be tighter-knit, Crystal says. The girls call Crystal ‘mom’ and Talona ‘momma honey’. They are also ‘really good big sisters’ to their little brother, and love playing with him – but their parents keep a watchful eye. At random, either one of the girls might start to get hyper, forceful, or have a meltdown. At that point, Crystal or Talona have to step in. 

But their intervention will be different depending on which one; the girls incredibly different areas of the spectrum.

While the field is wide, experts usually classify three categories that sufferers fall into.

There is Fetal Alcohol Syndrome (FAS), which is the most severe and generally occurs in infants whose mothers drank heavily during pregnancy. Kids with FAS have a distinct pattern of facial abnormalities, growth deficiency and evidence of central nervous system dysfunction.

A step down below is Alcohol-Related Neurodevelopmental Disorder (ARND), mostly occurring in babies of women who drank moderately or lightly during pregnancy. This refers to a complex range of disabilities in neurodevelopment and behavior, adaptive skills.

Specifically, children with ARND do not have the FAS facial abnormalities, but may have developmental disabilities including structural or functional central nervous system dysfunction (brain damage) with behavioral and learning problems.

The least ‘severe’ form is Alcohol-Related Birth Defects (ARBD) also occurring in pregnant women who drank lightly to moderately. ARBD describes the physical defects linked to prenatal alcohol exposure, including heart, skeletal, kidney, ear, and eye malformations in the absence of apparent neurobehavioral or brain disorders.

Maycee has partial FAS while Jentri has ARND.

It is first evident physically: Maycee has the classic FAS features such as the small eyes and small head circumference, but Jentri doesn’t.

Maycee is incredibly sensitive to clothing. She likes tight jeans and loose shirts. Socks are tricky and Crystal says she’s bought so many pairs of shoes because they have to feel a certain way.

‘It’s definitely random,’ Crystal said.

‘She’ll like one pair of Nike shoes and then I’ll buy another pair that are exactly the same and she’ll say they don’t fit right.’

Maycee Stringham, 14, (left) is the oldest of the siblings. She has the most severe form of the disorder, with classic FASD features; is sensitive to light, sound and clothing; is prone to violent outbursts. Jentri, 12, (right) was diagnosed with ARND, a step down below from the more severe FAS. She also has sensitivity to clothing but will tell her mother rather than yell and although she can seem bossy to other kids, she’s less prone to violent fits and Crystal doesn’t receive calls from school (both girls pictured in 2016)

If something doesn’t fit a certain way, she can have a meltdown.

Jentri is also particular about fabrics. However, unlike her older sister, she will tell her mother she doesn’t want to wear a certain shirt or pair of socks, before selecting something else.

At school, they both struggle in different ways.

Maycee is fiercely intelligent: despite failing to complete most days of school this year, her IQ matches her peers. Issues arise, however, in following the structure of the education system.

‘Her IQ is high enough to not be put into a developmentally delayed classroom.

‘They don’t understand that there’s things that are challenging for her. They don’t take the other disabilities into account.

She has a 92 IQ but it’s hard for her to copy words from the board to paper and she acts younger than her age.’

Impatient, and frustrated, she will instead leave school and walk home.

Maycee has only stayed a full day in school six or seven times all year. Most of the time, the school will send Crystal a text message and she either has to go home herself or find someone to go to the house and bring Maycee back to school.

The school has not filed truancy paperwork because Maycee is considered special ed due to her constant leaving campus.

Jentri has her own battles. She has some significant reading and writing difficulties and, due to her lack of impulse control, Crystal says that she comes across as bossy to the other kids.

Because of these situations, it can be difficult for the girls to make friends.

This has become less frequent since she started playing basketball this year, and made good friends on the team. 

Jentri has a habit of physically running away from situations without warning – usually for half an hour at a time before making her way back home. 

But, like other FASD kids, she does have meltdowns. But because she’s small for her age, it’s manageable – when Crystal’s around: she can literally wrap her arms around Jentri if she begins to have a fit.

The girls have had meltdowns among friends, but more so when they were younger – Jentri once threw a ball at a girl’s face and Maycee bit a fellow student in kindergarten – but Crystal has said they now cope a bit better.

Things are different for Maycee, who only has one friend. ‘She’s socially awkward and sometimes it burns people out because they don’t understand,’ Crystal said.

‘She doesn’t have boundaries and wants to know what everyone is doing.’

Crystal says that one parent told her that students at school are scared of Maycee. 

‘It breaks your heart because you don’t want to hear that other kids fear your child.

‘But in some ways, and I know it seems wrong to say, but if they’re scared of her then there’s no worry that someone is going to push her into a locker or try to take advantage of her.’ 

If Maycee gets into an argument, her first reaction is to bite. She’s broken two doors, thrown soda and broken glass. 

It’s reached the point where police were called to their house in Hooper one afternoon.

Maycee had gotten into an argument over homework and Crystal put her outside to calm down and didn’t let her back into the house.

Maycee took a hose to Crystal’s car and to the door.

When the officer came, Maycee was crying and the police officer told her to just take some deep breaths when she gets mad.

‘If only it were that easy,’ Crystal said.

Few resources are available in Hooper; next to none are covered by insurance. Crystal has double coverage (meaning two insurance plans each, one primary and one backup) for both girls, but there are few therapists that specialize in FASD.

She’s looked into one residential treatment in Texas, but it costs $14,000 a month for a six-to-eight month stay, and insurance will not cover it.

She said when she told the police officer she couldn’t afford the treatment, he told her, ‘Oh, I guess that’s what’s important to you’.

‘I’m nervous because I don’t know what the future will bring. It’s a lifelong disability and I think that’s the scariest thing for any parent,’ Crystal admitted.

‘Parents with FASD kids often don’t know what they’re doing. Every day is survival for both parent and kid.

‘Emotionally, I know I can’t do this forever.’