Tuesday, August 26, 2008

Expectations, Anticipation and Change: One Mom Details her Life with a Williams Syndrome Child

Louie and Ace: Vowels and Consonants:

You know, the funny thing about Williams Syndrome, which really isn't funny at all. Why do we use such stupid language sometimes? Anyway, the not so funny thing about Williams Syndrome is that I'd never heard of it. Ever. In my life. So, when Louie was diagnosed, it could be anything I wanted it to be. Oh, here on the Internet, it says mild to moderate retardation, so of course I deemed that Louie would be the "mild" case. Many kids with Williams Syndrome are musically gifted. I envisioned Louie playing with the Philharmonic or touring the world singing in 100 different languages. I read children with WS were extremely extroverted, conversational and friendly and loved people. Making friends at every corner; the adored child.

Okay, so it's not turning out that way so far. I know, I know, there's still time. But he is very atypical for someone with WS. He's what has been called "low-functioning". He is not friendly. He's not showing any musical talent. He doesn't speak a single word or even attempt words. He babbles, 'a' and 'e' and even that is rare. Who would have ever thought vowels and consonants would mean so much to me? His speech therapist sent home a note this week saying she heard the sound "muh." Do I celebrate? Yes, I suppose I do.

He has been diagnosed with autism. Point here is not poor me, as much as I realize it may sound. The point is that every moment, I'm learning more about what it means to be the mother of Louie. And who he really is. And it doesn't matter how many labels we put on him and how much I read about these labels. He'll still be Louie. But a Louie that tugs a little harder on my metaphorical, yet vulnerable, heart.

Balancing Faith and families - Williams Syndrome Children in Church

Balancing Faith and families - TwinCities.com

A very informative article on how one church has learned to include a WS child in their life.

Getting Ready for School? Teacher Aids for Kids with WS

Click here for a link to the WSA page for educators...

"As educational psychologist Eleanor Semel says, 'Educators are confused because the Williams syndrome child tests like the retarded child, talks like a gifted child, behaves like a disturbed child, and functions like a learning-disabled child.' Each of these terms has a specific meaning in the world of special education, yet none seems to fit the characteristic peaks and valleys in Williams syndrome. The result is that children with Williams syndrome are generally not well served by schools."

Sunday, August 10, 2008

Friday, August 1, 2008

The Neurocritic: Broken Social Scene

The Neurocritic: Broken Social Scene:

The Neurocritic reviews a new study on gaze analysis that compares WS subjects to typically developing and autistic subjects.


"The WS subjects viewed faces for a longer duration than did their respective controls. Specifically, the WS group spent more time viewing the eyes, but not the mouth. Conversely, as has been demonstrated in previous studies, the participants with autism spent significantly less time looking at faces (eyes in particular) than did their controls.

Whilst individuals with autism spent a significantly smaller proportion of time than typical fixating on characters’ eyes (17% of face gaze time), those with WS spent significantly longer than typical fixating on the same region (58% of face gaze time). Visual attention to the eyes may be implicated in other divergent abilities in face perception, such as the interpretation of gaze cues and expressions, where individuals with WS are more proficient than those with autism."