Tuesday, September 28, 2010

# 12 How to Have a Difficult Conversation

I first started seeing Helen three years ago when she was nine. She had a terrible memory problem, could not understand the simplest math concepts (especially when it came to using money), was socially immature and melted down a lot at home. Of course, she was the epitome of sweetness at school which made her mother, Debbie wonder what was going on with her little Dr. Jekyll and Mr. Hyde.

The diagnosis, as expected, was learning disabilities but her adoption from the former Soviet Union made me uncertain. This pattern of learning disability connected to a Russian adoption always makes me wonder about Fetal Alcohol Syndrome (FAS). It’s true that children with full blown FAS are rarely released for adoption anymore. They have physical characteristics that mark the condition and I shutter to contemplate where they all end up. But Fetal Alcohol Syndrome Effect (FASE) has no physical markings. It is FAS light and all the damage is inside. In my experience it is horrifyingly common in adoptions from that particular area of the world and looks just like this.

FASE was not mentioned so I asked if the possibility had been explored. “We consulted an expert,” Debbie replied defensively, “ and she doesn’t have it. She is beautiful and has none of the traits,” she concluded, case closed.

Uh oh. Either this “expert” was not the sharpest stiletto at the shoe store or more likely did not want to open up an uncomfortable or unproductive conversation. Some people believe there is nothing that can be done about FAS(E) anyway, so why make parents feel bad?

I don’t like having these conversations any more than the next person. They are hard and don’t always go well. But who am I to decide what is or is not possible? I am committed to being honest but I don’t want to be cruel. I grew up in a culture where you could walk around with a worm coming out of your head and nobody over the age of 16 would be “rude” enough to mention it. They might call you worm ear behind your back- but would politely avert their eyes and pretend not to notice.

Today, you would get your own reality show, “Keeping up with the Worm” or Dr. Phil would boom at you to “ lose the worm”. None of these extremes helps people or involves conversation.

So, I took a breathe and explained to Helen’s mother how you could not see FASE but that there might be some strategies we could try if we know what we were dealing with. There is some theory, for example, that high doses of folic acid might help brain development in FASE. She asked questions but objected to everything I suggested.

I mentioned specific bonding therapies and supplements that might improve cognitive function. “I am not comfortable with all of these supplements, “ she asserted but continued to talk with me. During the whole conversation I neither got defensive nor offensive but just hung in there with her.

A few months later Debbie returned. Surprisingly, she had purchased and had started giving Helen the nutritional supplements. “But, I don’t see any difference,” she insisted.

I again explained how the brain injury from prenatal alcohol exposure is persistent and pernicious. “This is a long haul operation,” I told her. “Looking back we hope she will have made more progress than expected or be functioning better than she might have otherwise.”

Debbie remained dubious.

Over two years passed and I did not hear from Helen’s mom. Last week she reappeared. “Remember, Helen?” she asked. “She is a 12 year old girl with FAS.”

Clearly something had changed. Debbie and Helen had been busy the last two years. Debbie had enrolled her in a special therapy program for children with FAS(E). She had been evaluated by one of the world’s experts on the condition who opined that Helen was progressing unusually well to therapy and supplements. Finally, Debbie had started a blog about raising a child with FAS to help other families.

“I don’t think the supplements are helping,” Debbie reported though Helen was actually doing better in many ways. The meltdowns were mostly gone, her memory was better and she was doing well at school, though still behind her peers. Math remained her big area of academic weakness and she was still significantly immature for her age.

I decided to change the cognitive program away from motor planning and memory. Helen had been taking everything for 2 years and had probably gotten all the benefit she was going to get from the old compounds. We kept the folic acid and fish oil but decided to try something new I had discovered. It is a unique supplement that helps regenerate the proteins used to send signals in the brain. I was not sure it would work because nobody knows exactly what will work in FAS(E) and said so.

Debbie was not enthusiastic but is considering the suggestion. She also mentioned that Helen had gone through puberty and now had the body of a lovely young woman, “with the emotional development of a 7 year old”.

I froze. That is a bigger gap than I had expected given our conversation so far. “How social is she?”

“Oh, she is so friendly and is very eager to please these days,” was the response.

I asked several more questions about Helen’s life, took a deep breath and started the new difficult conversation. “So, what are you going to do about birth control?” I ventured.

Helen’s mother sighed.

1 comment:

  1. This is great - I really admire your ability to persist with parents to advocate for what you believe to be the best for the child. It must be difficult to have those tough conversations with parents who are defensive, having a tough time, etc. I'm so glad I found this blog - I was directed to your work by Dr. Marilyn Agin and my speech pathologist, Bethe Halligan. I live in NYC and my son who is almost 3 has a rare chromosomal disorder and severe dyspraxia (he is not speaking or babbling yet), and we are doing everything we can. I wish I could hear you speak in NY, but it looks like I just missed your last engagement. I would love to figure out how to work with you from a distance!