Friday, August 17, 2012


There's a game I play sometimes.

I fix a drink (usually gin and topo chico with cucumber slices). I swirl around the ice and listen to the clink clink clink. I take a sip and feel the bubbles on my tongue and the bite of gin on my gums.

I finish that drink and I fix myself another one. More ice this time, a little less cucumber.

At this point I am usually feeling a little happy, a little buzzy, a little extra lovely.

I finish my second drink. More slowly this time.
At this point I am feeling a little tired, a little woozy, a little impaired.

I rarely make it past the second drink before I give up the game.

I don't feel good if I drink more than that. I get the spins, my mouth gets dry. I fall asleep easily but wake up an hour later with my heart pounding. I'm not good at drinking a large quantity of alcohol,
so I doubt I'll ever win the game.

The point of the game is to try to drink a specific number of drinks in one sitting. To try to equal the number written on the grainy fax we received in mid-December 2010. To swallow the booze and sit with the effects. To feel what it is like to flood my bloodstream with the alcohol.

To take it a step further and imagine what it would feel like if I was pregnant.

If I was pregnant with YH.

If I was pregnant with YH and I drank the number of drinks his firstmother reported drinking--every night for the first seven months of her pregnancy.

I can't do it.

****                  ****

The thing about prenatal exposure to alcohol is that it is horrifying. The amount of damage that can be done to every major system of a developing fetus is staggering. The injuries can be profound and life-altering--for everyone who loves the affected child.

There is no way to predict how ANY amount of alcohol will impact a child in utero. It's like a tornado, or a freak hailstorm. A wildfire that completely razes some homes to the ground while passing over others.

 Some children may have the "classic" facial features of Fetal Alcohol Syndrome: thin upper lip, smooth philtrum, low nasal bridge, and small palpebreal fissures. Some may also have secondary physical characteristics like "railroad track" ears, "clown" eyebrows, epicanthal folds, bent pinkie fingers, short stature, and microcephaly.

Some children may have none of the facial features or physical characteristics of the disorder. These children carry their congenital brain damage on the inside. They pass for "normal" because they don't look different, but may struggle with social immaturity, impulsivity, learning difficulties, impaired memory functions, global developmental delays, and mental illness. They may become easy marks for people looking to take advantage of them. They may battle addiction and incarceration.

The other thing about prenatal exposure to alcohol is that the damage is irreversible. Once a child's brain has been hurt by the toxins that injury can never be reversed. It can be accommodated for, and supported with interventions and therapies--but it can never be undone.

****             ****

Talking about children affected by prenatal alcohol exposure makes people uncomfortable. Some medical professionals are hesitant to diagnose the disorder because it assumes injury by another party, ie the woman who carried the child. Children who are affected by exposure and who remain undiagnosed are at greater risk than those who are diagnosed, and diagnosed early.

Children suffer because of the judgement and shame associated with the damage caused by prenatal alcohol exposure. Kids with prenatal exposure are often labeled "problem" children. They are talked about in whispers, they are used as central figures in cautionary tales about adoption/foster care. They are assumed to come from bleak backgrounds. They are punished by society for the presumed sins of their mothers.

Earlier this week YH had his last big doctor's appointment, with the geneticist. The aim of this appointment was to get him diagnosed on the Fetal Alcohol Syndrome Disorder continuum. While we wish our beautiful son had never been exposed to alcohol in utero, we are thankful that his firstmother disclosed the exposure when she relinquished him. It is much easier to get a concrete diagnosis with confirmed documentation.

The geneticist did a thorough evaluation of YH's physical features. She talked to me at length about his developmental and birth history. She took measurements and plotted them against the averages for children his age. She went through the diagnostic criteria with me step by step.

Our son does not have Fetal Alcohol Syndrome (FAS). This is usually the most profound level of impairment, often presenting with very low IQs and severe behavioral and emotional challenges. Failure to thrive and feeding issues are also often present in this group. Diagnosis requires the presence of the "classic" FAS facial anomalies.

Our son does not have P-FAS (partial-FAS, sometimes called FASD or FAE). This category includes some but not all of the classic facial features, plus a combination of other developmental and physical growth challenges.

Our son does not qualify for the next category down the diagnostic criteria: ARBD (alcohol related birth defects). This group presents with defects of the skeletal systems and other major organ systems.

The letters that YH walked out of the office with are: ARND. Alcohol Related Neurodevelopmental Disorder. This means that his outward appearance and physical self are not visibly damaged by exposure to alcohol. He is at risk for developmental delays, learning differences and behavioral challenges due to the damage caused to his brain by the exposure. We do not yet know the extent of the damage (his development is currently on-target); we sit and wait for new symptoms and challenges to present themselves.

Because of his "normal" appearance he will pass as neurotypical.
And that terrifies me, for many reasons.
But I am THRILLED to have those letters recorded in his file now, before he turns three.

They will serve as our magic pass into future services and evaluations. They will automatically qualify him for certain interventions.

These letters will not define him, but they will be an important piece of lifting him up. A key block in the very strong foundation for success that we are building for him.

****          ****

It would be easy for me to pass judgement on YH's firstmother for the "choices" she made while pregnant. It is absolutely heartbreaking to think of the challenges YH's future might hold--challenges caused specifically by his ARND. I am angry and sad at his diagnosis, but not at his firstmother.

As I said in an earlier post, I recognize that the information we received in YH's referral is at best an incomplete snapshot of a (very sad) moment in time in his firstmother's life. I cannot pretend to know anything about her daily life or her own challenges and struggles. It is not fair to imagine that her life today, in this moment, is anything like the life described in his referral.

So instead of thinking of her in anger I choose to hold her in peace.

****                ****

At bedtime last night YH wanted to drag out our routine. In addition to reading five board books and singing two songs he wanted me to lie down next to him. He insisted we sing "Happy Birthday" to each member of the family--Miss A, Sweet Bubs, Papa, Mama, the dogs, the cat. He clapped at the end of each round and blew out an imaginary candle.

He wanted to put his nose up against my nose. To take his index finger and trace the outline of my eyebrows, then his eyebrows. My nose, then his nose. My ear, then his ear.

At the end of the day he is the same sweet and silly boy that he was before his diagnosis. He is smart (so smart!) and curious and loving. He is all of the letters in the alphabet and all of the colors in the rainbow.

He's YH.
And he's perfect.


  1. Great post!! Our special kids are perfect!!!

  2. This is a powerful post, full to the brim with important information that many people need to know... but do not. (And presented in a way sure to get the attention even of those who do know but have chosen to pretend they don't.) Maybe you could remove the specific identifiers of your family & son and send it to magazines & newspapers, to get word out to all those people who aren't online junkies like us...?

  3. What a beautiful post.
    I have always said: different, not less--about my friend's baby who was born with VACTRL, and my friend's son recently diagnosed with autism, and about our mixed race family.

    But I'm so glad he will have access to early intervention services--I have seen them make ALL the difference for so many kiddos.

  4. Beautiful. I am thrilled for you as well. I agree with Jiu Jiu about an essay or article for a parents or women's magazine. I can hook you up with how to write a query letter books/people and some sources. It's really important info.