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Two is Not Too Young

April 12, 2011


Hope, two years old
This morning my husband and I met with Dr. Julia Conkel Ziebell at HSI to discuss her draft report of Hope’s FASD (Fetal Alcohol Spectrum Disorder) evaluation. She diagnosed Hope as having ARND with AD/HD. ARND is Alcohol Related Neurodevelopmental Disorder, FAS without all the physical indicators.
For those of you staring at the picture, her philtrum –the verticle groove between her nose and lip –and her upper lip were scored at “3,” or mildly effected, but not clinically significant. (This is actually not a good picture of that.) But the width of her eye openings –not her eye spacing –is below the 5th percentile, which is clinically significant.
But this post isn’t about Hope. Today just put an official label on what we’ve suspected.
Instead, I want to share the information I obtained at the end of our meeting, when I brought up the current rate of exposure in Korean adoption referrals and asked her advice for parents who knew their children were exposed but spent the early years trying to guess whether behaviors were “typical toddler” or were the early signs of an FASD.
She said that in a child with known exposure, two is not too young for an FASD evaluation. The trigger for an evaluation should be the parents’ concern, not the child’s age. She repeated that known exposure alone is not enough for a diagnosis. Any physical signs of exposure will be fully present (if there are any). The developmental tests done on toddlers are toddler-friendly and are scored against norms for toddlers so parents need not be concerned that in asking for an evaluation they are automatically saddling an exposed child with a diagnosis. In fact an evaluation on a toddler may not yield a diagnostic label. But she said it will yield enough information that parents have some idea whether or not their child will be among those who may later be diagnosed with an FASD.
Wouldn’t that be a relief? When we’re in the thick of the toddler years, we don’t have to merely try to survive and hold on for the more common “diagnosis around school age” advice? Back when Hope was two, we did not know enough to be concerned about the “mild exposure” listed in her referral. So instead we were serially trialing all the parenting wisdom directed at parents of “strong-willed” and “spirited” and “out-of-sync” children, hoping one of them would be the longed-for insight into Hopes behavior. (Each had elements that were helpful. But none solved the puzzle for us.)
Had we known enough to simply get an evaluation, it would have saved us so much wear and tear on our family life. The truth that we were dealing with a hidden physical disability, not simply character issues, would have been the proverbial hot knife through the butter we slogged through trying to discern whether this was “typical for her age” as our pediatrician and preschool teachers reassured us. Those reassurances kept us beating our heads against the wall for longer than necessary.
Friends, it may seem kind to reassure one another that our biological child went through a phase just like that one….or whatever. But when we’re talking about our adopted kids, it would be much kinder to raise the possibility of fetal alcohol exposure. Especially for our kids with known exposure. An FASD evaluation should be the first thing we reach for, not the last resort when all else fails.
An important footnote. Only 10% of the children later diagnosed with an FASD have (I’m putting this my own words, relative to the Korean adoption process) facial features clinically significant enough to be visible on referral photos. Given Hope’s mom’s report of minimal alcohol use during her pregnancy, Hope’s referral photos were screened by an IAC looking for signs of FASD and even the width of her eye openings (which have been clinically significant from birth, had they been measured by a trained diagnostician) did not register on the screenings used six years ago.
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