23 Years After the Fetal Alcohol Diagnosis

A public health crisis off the radar.

1973. A group of pediatricians and psychiatrists at the University of Washington Medical School publish their findings in a British journal. Their conclusion – alcohol use during pregnancy has negative effects on the growing fetus.

More so than other drugs – because alcohol is a teratogen. It permanently changes fetal cell development within the womb.

Irreversibly damaged.

Now the condition had a name. Fetal Alcohol Syndrome.

2019. Women around the world continue to drink alcohol during pregnancy – in spite of increased public awareness. 1 in 20 children show varying symptoms.

A conservative estimate.

They fall under the umbrella of Fetal Alcohol Spectrum Disorder (FASD), a updated term to include Fetal Alcohol Syndrome, Alcohol-Related Neurodevelopment Disorder and Alcohol-Related Birth Defects.

The vast majority never properly diagnosed.

Today FASD is decades behind autism.

And its public recognition and acceptance.

Now FASD is overshadowed by the opioid epidemic.

Which dominates community and governmental conversations – along with hundreds of lawsuits against Big Pharma. 

Yet I know FASD too well.

In 1997, four young foster children received a Fetal Alcohol Syndrome diagnosis. Most in the child welfare system do not – even though at-risk.

One year later I adopted them. With permanent brain damage from their exposure to alcohol in utero, I had no time to waste.

Ashley's first Christmas 2Could extensive nurturing at home make a difference?

Could best practices at school ease the impact?

Well, they did.

They made them feel safe. They minimized the repeated failure that is so common with FASD.

And they reduced the all-too-common secondary (or acquired) conditions of school suspensions, substance abuse and juvenile detention.

But the brain damage remained.

Permanent. Irreversible.

The Long Journey

Two of my children took the biggest hits, because their birth mother self-medicated her depression with alcohol throughout both pregnancies. Blacking out was a weekly occurrence.

With IQs hovering in the 60 range (more than two standard deviations below the average of 100), learning became incredibly difficult for both by third grade. Their progress lagged behind their peers, regardless of repetitive instruction.

They did inch forward – just incredibly slow. Some days they could remember previous lessons. On other days they couldn’t retrieve the knowledge – lost in their damaged brains. 

And how they tried to behave. But so many rules and procedures to follow, coupled with sensory issues related to FASD. The two were overwhelmed by noise, wordy instructions, crowded areas and all the “stuff” surrounding them in the classroom.

Don’t touch everything.

Don’t talk out of turn.

Don’t rock your chair.

By high school reading comprehension skills remained at a second grade level for one. Multi-step math problems were impossible for the other. Their brains simply couldn’t process the higher-level thinking.

Analog clocks and fractions never made sense.

They did inch forward – just incredibly slow.

With less maternal alcohol use, my other two children fared better. Their birth mother (fortunately or unfortunately) was detained for part of their pregnancies. 

Their IQs are in the 90s – slightly below average.

FASD brain

However, passing high school algebra and geometry took serious effort. Long sessions at the kitchen table almost every night to understand. Many meltdowns. Loads of patience on my part to re-teach.

And without accommodations in their Individual Education Program (IEP), they would have failed every test. A list of formulas and examples enabled them to apply their knowledge.

Because they acted like their peers most of the time, some teachers judged harshly – when they struggled. After all, their disability appeared invisible. Yet the damage to their brains was very real.

Perceptions

Lazy was a word used to describe my children. The truth spoke otherwise, Their brains processed language and visual information at a slower rate than most. And not always correctly. 

Disabled yet capable.

Able to learn – but differently.

Nevertheless, all four are creative. They enjoyed art and music immensely, especially when teachers allowed them flexibility to explore possibilities.

Color outside the lines.

Each played the violin for six years – mastering the instrument by ear and finger placement, since reading notes accurately wasn’t possible. Thankfully their instructor threw his usual strategies out the window and started fresh.

Organization was, well, disorganized.

Their brains didn’t see things the same as mine, due to a lack of working memory. Order was a relative term, not absolute. The fewer things the better. One less object to become lost – and found months later in a totally illogical place

All struggled with friendships.

Several more than the others because they misinterpreted social cues. By trusting too quickly, their peers frequently took advantage. Few returned the same kindness.

Over time my children preferred the predictability of being alone – rather than the risk of being ostracized. Each refused to be a target for bullies.

At least they had each other. Home was a place of comfort, a place to release pent up emotions that they suppressed at school.

Why all the challenges?

Consistent with a Fetal Alcohol Spectrum Disorder diagnosis, my four children had significant deficits in cause and effect reasoning. That translated into poor judgment (open for more info).

Regardless of meaningful consequences to teach necessary skills, they repeated the same behaviors over and over. And over again.

In other words, they couldn’t learn from their mistakes.

Sad but true.

All related to FASD.

Numerous discipline reports at school. Regular suspensions, in school and out. Even a couple of expulsion hearings that forced high school administrators to finally change their tone – and their approach.

Shaming them to behave created instant frustration. And debilitating anxiety.

Without question, prevention was the key – along with constant, compassionate supervision (yet not overbearing).

In other words, an external brain to fill in the gaps of their executive functioning deficits (open for more info). 

That intense, ongoing support reinforced my children’s ability to pause and think, rather than react impulsively. It still does today as young adults, whether at home or in the community.

aleks-weddingUnfortunately, only one obtained a high school diploma. The other three couldn’t pass high-stakes tests.

Today, life as young adults is not easy. One crisis after another. The right people in their circle make a huge difference. They can offer guidance.

But none are in prison. And two have jobs that push them to the limit mentally – everyday. Thank goodness for the Americans with Disabilities Act and the accommodations it affords in the workplace.

Moreover, access to affordable, regular medical and mental health care is imperative. Lifetime expenses for my most affected child have exceeded $1.5 million.

It is what it is.

Even with the FASD diagnoses, my children’ medical doctors weren’t necessarily aware of the implications. Some totally ignorant. Three of my children were later diagnosed with bipolar disorder, without showing typical symptoms. Other professionals assumed two to be on the autism spectrum.

They’re not.

Psychotropic medication (open for more info) reduced but didn’t eliminate the ADHD-like symptoms associated with FASD.

Sorry folks, their condition has a name.

It’s Fetal Alcohol Spectrum Disorder. 

Trauma before birth. In the womb. Yet entirely preventable when a pregnant woman abstains from alcohol.

Yes, 23 years have indeed passed since my children’s diagnoses. While their coping mechanisms did increase – along with emotional maturity, their brain damage didn’t decrease.

Their condition has a name.

Rather than focusing on what they couldn’t do, I urged my children to focus on what they could do. Their strengths. Their passions. 

Positive accomplishment is great therapy for anyone, especially for individuals who don’t readily fit the mold.

nurtureMeanwhile, millions of pregnant women aren’t heeding the message about not drinking alcohol. Some OB-GYN doctors add confusion with mixed messages about social drinking.

In fact, the FASD problem continues to grow. A true public health crisis in the United States and abroad.

And it affects all races and socioeconomic groups – with South Africa, Ireland and Eastern Europe being the worst.

That’s not anyone’s definition of progress – especially for the child or young adult who lives with FASD every day.

Let’s bear the responsibility to spread the word. Let’s confront irresponsible behavior before and during pregnancy. And Iet’s provide accessible addiction treatment to pregnant women. 

No doubt, the outcome for my children could have been different. 

And countless more just like them.  

Most importantly, let’s not forget individuals living with FASD. They often lack supports. With greater understanding and advocacy, services for those on the fetal alcohol spectrum one day will mirror services for those on the autism spectrum. 

And maybe – just maybe – every state attorney general in the near future will take on the alcohol industry.

We can’t accept anything less. DCP

________

Craig Peterson publishes EACH Child every Tuesday. To subscribe, open this link and “Like” the page. EACH Child is Special: Working Smarter Not Harder to Raise Every ONE

To follow Craig’s journey in raising his six children with special needs, click here: Adopting Faith: A Father’s Unconditional Love

To follow my son Andrew’s inspiring story, “Like” his special Facebook page NoLimitsAndrew – Andrew Peterson

To watch Andrew’s amazing ESPN 14-minute documentary, click here. Andrew Peterson ESPN Documentary

23 years

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