HOME PLACE - Learning hard truths about fetal syndrome


"What's wrong with that girl," the woman asked with irritation. "Why, she's the biggest kid out there!"

The occasion was a girls' softball game and "that girl" was my twin daughter who had just missed an easy pop fly.

Born with Fetal Alcohol Spectrum Disorder and resulting developmental disabilities resulting from her birth mom's choices, this was not an unusual moment for my kid.

She was 15 and her father had promised to Twin Two and her little sister they could play, despite my spoken-aloud thought that both simply wanted the uniform shirt.

That's the year Dad died, however, leaving me the job of shuttling here and there with softball players in the minivan. Neither had played the game before; soccer had been our poison.

I'm just going to be honest -- the whole experience was painful. And not helped by comments like the one I heard sputtered behind my back. I slowly turned to look at the older woman. Her raised eyebrows indicated she expected my indignation to join hers.

"That's my kid and she has a brain injury. It's her first season to play."

As the backpedaling began, I lobbed a practiced forgiveness her way and spun around, ready to cheer. Loudly.

Fetal Alcohol Spectrum Disorder is not a brain injury very many people understand. It's invisible, for starters. Only some of its victims have the facial anomalies we associate with Fetal Alcohol Syndrome. Even fewer folks are comfortable with the concept -- that the brain is an organ and, like any other organ, can suffer episodes of illness. Some lasting a lifetime.

When someone's heart, for example, becomes diseased, we hold fundraisers. Liver failing? We'll bring you dinners until you're better. Say "pancreatic cancer" and watch the flood of sympathy.

Mental illness, including that induced by prenatal exposure to drugs and alcohol? That's when we talk about spiritual battles and isn't it great that there are so many medications out there now.

Or, even better, we blame the parents, looking for signs of abuse and neglect.

That's like blaming diabetes on bad parenting, my friend Chris Bouneff, head of Oregon's National Association on Mental Illness, likes to say. "You can come from the best home ever and still be mentally ill."

Before I launch into an explanation about my family's situation, let me say that my three youngest children were much loved by their birth parents. However, that mom and dad suffer their own severe mental function issues, including retardation. Neither could make appropriate parenting and other choices, both before and after the birth of several babies.

I don't know all of the history, but documentation by child welfare workers and comprehensive neurological testing of my 17 year-old twins tells me enough: the damage is there, it's extensive and it's permanent.

When unborn babies are exposed to alcohol, recreational and prescription drugs not approved for use in pregnant women, bad things happen.

In the case of my twinsters, such toxins prevented parts of their brain from developing. Some did not grow at all. Neurons failed to connect, lobes grew smaller than typical.

When people ask about psychotropic medicines, I ask right back: "How do you treat something that does not exist? How do you medicate a hole?"

When they mention behavioral modification, I try to be patient -- that phrase indicates there's a choice to be had about how to behave. Sorry, but birth mom's use of medication and alcohol to quell her own mental illness took that option out of my daughters' hands.

We saw it right away in Twin One, before we had any real clue. Even at 2 ¬?, this little girl was ruled by her impulsiveness. And no consequence could change things.

There was the time she crawled to the same plug outlet 30 times and tried to pry out the safety covers. Thirty times.

But that was nothing. Her behaviors rocketed out of control nearly every day, increasing in magnitude with every month. We tried every parenting trick we had in the bag and borrowed from others. .

Twin One was labeled with Attention Deficit Hyperactivity Disorder at age 5 after she punched her pregnant preschool teacher in the stomach. At 7, she was diagnosed with bipolar disorder. Epic tantrums were well known in our house and neighborhood as my child's inner torture collided with everyday life.

Family outings were guaranteed disasters; the only variable was how much time we could get before the volcano erupted.

And people were starting to get hurt. Damaged. Emotionally and physically.

Thanks to a tightly-woven support network, we were still able to maintain. Our pediatrician, teachers, pastors, neighbors -- together we weathered the tides that pushed and pulled this little girl. Medications failed time and time again, but my kiddo's people never did.

Even when things went from hard to horrific. By the end of fourth grade her pastimes included slicing her skin with scissors and playing with a hot iron. Talking to herself in strange voices. Saying she wanted to kill herself. A kid who had never watched a scary movie in her life was chilling my blood.


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