Tuesday, August 9, 2011
My daughter's words in block printing sum up the reason for this series of columns: "If moms drink while pregnant, it causes brain damage."
Then there's her secondary reason, one that rips my heart out every time I see it: "People already think I'm weird. Now they'll know why."
It is her and her twin sister's fervent hope that by talking about what happened to them, no other children will ever have to know the angst of the world's most preventable birth defect.
Yep. Fetal Alcohol Spectrum Disorder, better known as FASD, never has to happen again. Ever.
But it will. According to the Centers for Disease Control and Prevention, one in eight women say they use alcohol sometime during their pregnancy. One in 50 admit to binge drinking during pregnancy. Even scarier? "Only about 40 percent of women realize that they are pregnant at four weeks of gestation, a critical period for organ development." Data says many women are still imbibing at that moment.
There is no known safe level of alcohol or unapproved drug usage. Carry that one with you.
And in our case, the bigger culprit was anti-psychotic medication used to treat birth mom's schizophrenia. That provided a daily hammer blow of powerful drugs to my children's tiny, incubating brains.
As Twin Two writes under the potential outcome of taking her story public: "People will know it can't be changed if people decide to do that while pregnant."
You can go to any number of websites and look at the plethora of terrible symptoms of FASD, but allow me explain a little bit how the disorder looks in our family.
Primarily evident to most people are developmental delays. The baby of the family, now 13, has shot ahead of her older twin sisters in nearly every developmental milestone. How she was spared this disorder, we'll never know - my guess is that birth mom tried as hard as she could to do everything right so the last child of six would not be taken from her home.
The notable result is that my 17 year-olds appear much younger to strangers, physically and socially. I can see it in people's faces - here are girls who should be talking about driving, dating, their jobs that suck and choosing a college. Instead my daughters are immersed in the topics any sixth-grader might be exploring after they've politely answered with their chronological age.
There are huge issues with impulse control in both twins. In Twin One it manifests in violence and aggression; in Twin Two it means poor social reasoning - watch TV or do homework? Let a stranger through the door or call Mom to the door? Lie or tell the truth?
Intense anxiety cripples both my daughters, requiring medication for daily functioning. So that fingernails aren't chewed to bleeding nubs and no one is frozen with indecision and fear.
There are enough cognitive challenges to fill another newspaper page. Every year I find myself educating the educators about how organic brain damage is going to color the school year.
I could go on and on, listing auditory processing disorder, impaired fine motor coordination, information processing speeds in the fifth percentiles.
For Twin One, the consequences of FASD have been devastating. While her brain damage impacted us from the start of our adoption journey, we were too naive to understand we'd been broadsided by a lifelong disorder.
When the problem decided to roar out of control with a vengeance, we had no more armor against the approaching madness. Although previously private in wrestling with this, my husband and I were forced to knock on the doors of social workers, psychiatrists and residential treatment clinics. We could only hope they knew more than we did.
In the end, however, even the most special of specialists were no match for Twin One's damaged brain. We spent more than five years learning that very hard truth. No prescription, no therapy, no treatment plan was going to jump the gaps the prenatal poison had channeled into our baby's poor head.
Lithium, the gold standard to calm most mania, was the only thing that helped. And my daughter needed the highest legal adult dose by age 12 simply to live with other humans. Yet it does not allow her to live at home, especially with the paucity of services in a forgotten county on the forgotten side of Oregon.
Events such as her father's death cause my child to spiral madly for years. We can only watch helplessly as her brain rejects the reality time and time again.
Twin One now lives in a group home on the west side of the state with four other developmentally-disabled young women. She is who she is at this house; her disorder is just another fact about my girl and no one is trying to therapeutically excise anything.
We call every day, we visit once a month. We send packages. I spend time every single day as her advocate, trying to give her the best life possible through fervent phone calls and persistent emails.
As you may imagine, I'm not anyone's favorite caller, although I greatly respect the people who work with my child.
But I want what I want for her and I'm taking no prisoners. It isn't how most people parent, but it's how our family looks right now. A friend remarked that it must have been very hard in the beginning.
"It's still hard. Every day," I replied.
My twins compiled their final thoughts on this column series together over the phone. They discussed possible consequences of going public for hours. That list is lengthy and I cannot adequately express how proud I am of them for deciding to head forward.
However, it is the final two statements under the "good" side that make me really cry.
"Adoption isn't bad," the twins state in Twin One's beautiful penmanship. "We still love the family that we have."