Devoted to parents who are new to Williams Syndrome

From Howard Lenhoff, father of Gloria, and Executive Vice President (Volunteer) Williams Syndrome Foundation

Some of you may have been bewildered, to say the least, when your physician or geneticist told you "Your child has Williams syndrome." She probably told you much of what you already know: that your child does not sleep well, that he can’t hold his food, and that he is having a difficult time doing many things that others baby do. But there is so much more to Williams syndrome, some difficult things and some beautiful things, such as their loving and sweet nature and their love for music.

Right now, however, you are probably thirsting for more information about Williams syndrome and how you can get help for your child. You also may be finding some of the information available either too oversimplified or too technical and voluminous. Although we have tried to make this web page comprehensive and easy to navigate through the use of the outline, website map and search engine, it is often difficult to know where to start.

That is why we decided to put together a special section for you as you become acquainted with Williams syndrome. After a while you will be able to search this and other web sites for the specific information you may want, such as the location of Williams syndrome clinics or information on the various music camps.

We have organized this section in the following manner:

• Dreams for Devin: It is important to plan ahead for transition goals. By telling our story, it is our hope to help others with the transition process so they can know what to expect.
• Medical: Two summaries, one in general terms, and the other in more technical terms of some of the characteristics that you may find in your Williams child.
• General Review: Once you have assimilated that background information, you may wish to read this article about Williams syndrome that appeared in Scientific American magazine.
• Genetics: After reading that, you may then be ready for some articles about the genetics of Williams syndrome that were specifically written for parents who have little or no scientific background.
• Diagnosis: With that information you will be able to understand the nature and importance of the FISH diagnostic test for the elastin gene.
• Behavioral Guidelines: Once you understand some of the science, reading the "Guidelines" may help you cope with being a parent of a young school age Williams child and also with being a parent of an adult Williams child.
• Multimedia: It is often helpful to peek into the future by viewing the experiences and progress of other families with WS children. Such glimpses are available in videos distributed by the Williams Syndrome Foundation and the Williams Syndrome Association.
• Getting Help: To introduce you to the support groups out there specifically interested in families with Williams syndrome, we point out the different functions of the two major parental support groups. If you have not done so already, we urge you to contact (info@williams-syndrome.org) and join the Williams Syndrome Association. That organization sponsors regional and national meetings and can introduce you to Williams families in your area. As your child become older and you become interested in music and in residential situations suitable for your child, you should become involved in projects of the Williams Syndrome Foundation.
• Email contacts: Lastly, we recommend that you check the award-winning Williams Syndrome Comprehensive Web Page (www.wsf.org) regularly because we are continuously updating it with new information. Be certain to sign our guest book and send along an electronic photograph of your child so that other families in similar situations and who live nearby can contact you.

 

 

Welcome to Holland (aka The Beauty of Holland) by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability -- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful vacation plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very, very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, "Welcome to Holland."

"Holland?!?", you say." What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy. "

"But there's been a change in the flight plan. They landed in Holland and there you must stay."

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for awhile and you catch your breath, you look around, and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, 'Yes, that's where I was supposed to go. That's what I had planned.'

And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Another Gloria Moment before Surgery

by Howard Lenhoff

One of the most memorable of many such moments with Gloria occurred in the fall of 1991, Gloria was entering the operating room to prepare for the mending of a broken hip caused when she was hit by a moving auto. To boost her spirits before the eleven hour operation, Gloria’s brother, Bernie, walked besides Gloria as she was wheeled  into the operating room on a gurney, and, accompanying himself on his guitar, sang folk songs for Gloria. By the time they reached the operating room,  Gloria was harmonizing her brother!

On March 27, 2006, fifteen years later, Gloria was a little nervous as she entered the surgery wing of an eye clinic to have a cataract removed. We had only recently learned that she had been completely blind in her left eye for the past half year. While Sylvia, Gloria’s mother, was trying to reassure Gloria that the surgery would be a simple painless process, I went to the desk to sign Gloria in. I was surprised when the receptionist asked for Gloria’s identification card with her photo.  We had not brought it assuming that all we needed were Gloria’s medical insurance cards. So I reached into my wife’s sack of papers and snacks, and pulled out a couple of Gloria’s CD’s, “Religious Classics for Soprano” and “Gloria Lenhoff and Friends,” both of which had a photograph of Gloria on their respective cases.

The receptionist smiled, and within 20 seconds, three nurses gathered around the desk to say they thought that they had recognized Gloria. One had taken her children to see a concert Gloria gave at the University of Mississippi and had purchased one of her CDs there. She said her kids had then recognized Gloria on the Discovery Health Channel when it aired just a few weeks ago on March 13, and they called their parents to watch. The other two nurses recognized Gloria from articles about her in Oxford’s Eagle and Jackson’s Clarion-Ledger respectively. Another patient, overhearing the chatter, said that she remembers reading last fall the feature article in the Memphis Business Journal about Gloria performing in Opera Memphis.

Noticing the flurry of activity, the anesthesiologist came over to say that he too thought he had recognized Gloria. He proceeded to tell us that his niece had seen Gloria on 60 Minutes, and from that program learned that her son also had Williams syndrome.

They called to Gloria and said that they were happy to have a celebrity as a patient. Minutes later the smiling Gloria pranced into the operation room, chatted with her admirers, and 40 minutes later came through the operation smiling. Was she pleased that the operation was over? Or did she love the attention.? Probably both, because before they released her, they asked her to sing one song, which she did – the Afro-American spiritual, In Bright Mansions Above.

Another “Gloria Moment.”