Thursday, September 24, 2009

Fetal Alcohol Spectrum Disorders

     Yesterday was eventful for me. It was a day I'd been looking forward to for seven months. It was the day Ian and I met with Dr. Allan Rope at the Department of Medical Genetics next to PCMC. Dr. Rope specializes in Fetal Alcohol Syndrome.
     Before the appointment, I was convinced that I needed and wanted the definite, once-and-for-all, diagnosis of FAS. After the appointment, I was so grateful for a lesser diagnosis. I knew that children with FAS had tons of neurological and behavior problems, what I didn't know, was that a true FAS child will have facial deformities, making them as recognizable as someone with Down Syndrome.
     In diagnosing FAS, there are certain guidelines to follow. A doctor will look at abnormal facial features, growth, and problems with the central nervous system. In Ian's case, the space between his upper lip and nose is slightly flat and he has a thin upper lip. These are signs. His throat is short, which is another sign. His pinky fingers are curved slightly inward, and he has a very hairy back, both of which are signs. However, he didn't meet enough of the abnormal features to qualify for FAS. His head is an average size, his height and weight are on the low end but still within normal limits, his cheekbones and nose are not flat, and his eyes are spaced appropriately.
      As a baby, Ian did have sucking and feeding problems and still struggles, never chewing his food and often choking to the point of vomiting. Ian does suffer from poor impulse control--I think there is no control--poor social cues, hyperactivity, attention deficits, lack of empathy--which he is slowly learning--and cause and effect discipline. He also has speech problems and poor motor skills along with vision impairments.
     And with all that, he still isn't bad enough for the FAS diagnosis. Which I can thank God for.
     Dr. Rope taught me a lot in the two hours I spent with him. He reassured me that while some kids who suffer from fetal alcohol exposure have low intelligence, it was clear Ian wasn't one of them. He is a very bright and clever little boy who "probably knows very well how to manipulate his world." So true. Because of Ian's intelligence, he is capable of learning, capable of being taught right from wrong, and developing a conscience. There's hope! It will just take a long, long, long, long time.
     At the end of our visit, Dr. Rope told me that while he couldn't give me the FAS diagnosis, he did know that Ian definitely suffers from his exposure to addictive substances in utero. Unfortunately there isn't a label for that. The CDC is currently working on it, so that children who don't meet the full criteria will still be recognized and can receive help for their disabilities.  They are working on Fetal Alcohol Spectrum Disorders. In the meantime, he told me to throw around the term "Fetal Alcohol Effects" when dealing with school personnel and (gulp) correctional officers.
     Children like Ian will never be normal. There is no cure for substance abuse exposure. They will be impulsive, using poor judgment, and will often be in trouble. Teachers, friends, family members, and community members need to be aware of this. These little ones don't misbehave on purpose. They do it because they can't help it. But, like Dr. Rope said, they can be taught. It will take time, patience, and knowledge. But I've always believed that it truly does take a community to raise a child.
     Mine is doing a great job.

1 comment:

Kim Bringhurst said...

Ian is so lucky to have landed in your family! You know I have a soft spot for misunderstood...