A New Normal

Attending the national Williams syndrome conference in July, 2010, brought an interesting mix of emotions for me. On the one hand, I didn't want to be there since the mere fact that we were there served as confirmation (as if I needed it) that our son has a genetic disorder. Although I've accepted that idea that Buddy has Williams syndrome, I still feel a certain "sting" at times, and I realize all over again what the diagnosis brings with it. This was one of those times.

On the other hand, I wanted to be there--to learn as much as I could about WS, to meet other families, to know that we're not alone in this journey. And in those respects, the conference was a blessing.

Being surrounded by hundreds of people, ranging in age from just a few months to over 50 years, who happened to be missing a certain section of genetic material on their seventh chromosome was like stepping into a world where "normal" was redefined. I didn't need to worry as Buddy chased the wheels on passing strollers because their child did it, too. I didn't need to be concerned about what people would think when Buddy walked up to total strangers and opened his mouth in greeting--instead of wondering what was "wrong" with him, they simply bent down and said, "Hey buddy, what's your name?"

Even among his age group, there was a wide range of capabilities--those who could walk but couldn't talk; those who could talk but couldn't walk; those who talked early; those who talked later; those who had severe medical problems; those whose were more mild. And it was all "normal."

And the smile on everyone's face was the same. The ability to make friends out of total strangers just by saying, "Hi, I'm Alex. I'm 25. I live in Toledo. What's your name?" was ubiquitous. And it was all "normal."

On Wednesday evening, the WSA held an Opening Night Reception for everyone. Of course, no gathering with WS people in attendance is complete without music. A live band performed for everyone.

And Buddy enjoyed it. (We'll need to work on his rhythm.)

It was almost magical to watch when the band began to play and all those with WS began gravitating toward the source of the music en masse.

And it was encouraging to watch this guy do his thing on the drums and wonder if that would be Buddy in a decade or so.

I learned a lot from the sessions and was sorry I wasn't able to attend more. A few points stick out in my mind:

1. Therapy works. Although I know that the various early interventions (occupational therapy, speech therapy, physical therapy, etc.) work for typically developing children, there's been a nagging thought at the back of my head that maybe therapy wouldn't make a huge difference in the case of those with genetic disorders. However, Dr. Morris (a woman who has spent the last 20 years of her professional life researching Williams syndrome) mentioned in one of her sessions that the 9-10 year-olds she sees today are much further along than the 9-10 year-olds she saw just 10 years ago. Early diagnosis and intervention really do work. And I was encouraged to continue doing all we can to help Buddy gain every advantage.

2. Phonics works. In another session, Dr. Mervis (another WS researcher who happens to teach at a university just an hour away from us) presented her findings that those WS children who had been taught to read with a phonics program (instead of a sight-word or whole-language approach) were reading at or above what they should have been reading for their IQ level. Hooked on Phonics here we come. (if you're interested in reading Dr. Mervis's paper on the topic, send me an email and I'll send it to you.)

3. Music works. Several sessions emphasized the importance of incorporating a musical aspect to learning with WS kids--for example, through a music-minded unit study approach or teaching through song.

4. Replays works. Dr. Levine is another WS specialist and has developed a behavior modification technique she calls "Replays" which helps treat anxieties and emotional/behavioral problems in children with special needs (although she said her technique also works with typically developing children, too).

We also had a bit of fun while there when we attended nearby Grant's Farm with other WS families on Thursday evening.

We got to feed baby goats, see Clydesdale horses, ride on a carousel, and wander among a lot of other kinds of animals. It was a great evening.

We've returned to the real world and settled into the regular "normal" once again. But we're already looking forward to the next gathering in Boston in two years.