Hope: A Case Study Chat With
Dr. Howard Lenhoff
From Nightline in Primetime: Brave New World September 9, 1999, 10:30 PM EDT
Moderator (at 11:03pm ET) Howard, you mentioned that there have been many advances in the understanding of Williams Syndrome during the past year. Can you tell us a little more about that?
Dr. Howard Lenhoff (at 11:03pm ET) Research on understanding human behavior often starts by exploring observations that have been made by a number of parents and teachers. We call such observations "anecdotal" evidence.
For years people with Williams syndrome have been reported to have some unusual musical talents, sometimes surpassing those of normal musicians. Research in the past year, since this program first aired, has shown that Williams people do indeed have unique abilities in perfect pitch, relative pitch, rhythm, and in retention of melodies. Much of this research is still in progress and is in the process of being quantified. We think that the next few years will establish Williams people as having a very high "musical intelligence." That is the fun of fundamental research.
Moderator (at 11:11pm ET) Howard, many people are asking for more information on the Williams summer camp. Can you tell us more?
Dr. Howard Lenhoff (at 11:12pm ET) To foster musical opportunities for Williams children, a group of parents started a week long music camp in western Massachusetts near the Tanglewood Musical Center. The camp has been very successful and just completed its 6th summer. Two other music camps for Williams people have sprung up in the past two years, the latest being in San Antonio, TX, and many talented Williams musicians are being discovered.
Now a group of families in Massachusetts are planning to open in the fall of 2000 a year-round residential music academy in the Western part of state, possibly associated with a group of colleges in the Amherst area. Likewise, the Regents of the University of Texas have approved the establishment of a music academy with a research emphasis to be on its San Antonio campus. All we need to do now is to raise the money. That will happen, but the important thing is that Williams people have a unique opportunity to develop their skills year round, not for just a week as occurs at the summer camp.
But being proficient in music, even proficient enough to make a living at it, does not give Williams people skills at independent living. That is more difficult. I believe that Williams people will always need some sort of supported living arrangements, although there are some high functioning Williams adults who are doing quite well. The plan of the new music academy is to also provide an education and experiences in life skills. By the way, our first music academy will be called the Berkshire Hills Music Academy.
Sunburn from [209.206.32.58], (at 11:14pm ET) Dr. Lenhoff, Are your investigations into Wm's Syndrome primarily medical or behavioral? Is it your belief that people with Williams can overcome the genetic anomaly?
Dr. Howard Lenhoff (at 11:15pm ET) Our research is strictly behavioral and currently focuses on music.
Williams people can not overcome some of the genetic problems they have, which are caused by a small missing piece of chromosome # 7. However, therapy and training can help them overcome some of the behavioral problems that they might have.
Dennis from [209.138.49.101], (at 11:16pm ET) How can Dr. Lenhoff be contacted regarding his research?
Dr. Howard Lenhoff (at 11:18pm ET) I welcome questions and suggestions and offer to help by having people contact me by email at hlenhoff@uci.edu. They also should first look at the excellent web page of the Williams Syndrome Foundation [www.wsf.org}.
Ann from [205.188.195.24], (at 11:24pm ET) This question is addressed to both doctors: How do you handle inquiries from the public about your child's condition?
Dr. Howard Lenhoff (at 11:24pm ET) I take every opportunity I can to talk about my daughter's condition. For one, people note that she is retarded, and then are amazed at her abilities. So I like to use her as a strong example to show that people are different. Everyone has strong and weak points. Gloria and other Williams people may be weak in the subjects that are usually thought important, such as reasoning power, but they are extremely "intelligent" in regards to their musical abilities. Once people hear and meet Gloria, I think that their views of the abilities of the retarded are forever changed. Gloria is never embarrassed by such discussions and gets much pride in doing what she does best.
Sharon Mack from [152.163.207.62], (at 11:26pm ET) I am a special education teacher. I am familiar with autism but I'm not familiar with Williams syndrome. Is it a form of autism? There seems to be some similarities. Where can I get info on Williams syndrome?
Dr. Howard Lenhoff (at 11:31pm ET) Williams syndrome has a few characteristics like autism, and a few Williams people are considered autistic as well. But in some major ways they are almost opposites of each other. Whereas autistic people have difficulty in making eye contact, and seem to avoid hugs, Williams people are extremely friendly and talk to virtually anyone who looks friendly. They are big huggers.
Only 1/20,000 are thought to have Williams syndrome, and only 5,000 Williams people have been identified in Canada and the USA. So it is relatively rare, although I will guess that many "new" families will first hear about Williams syndrome through tonight's program.
I think the best place to learn about Williams syndrome is through our web page, www.wsf.org, which has links to all other Williams syndrome organizations, including the very important Williams Syndrome Association at wsaoffice@aol.com
Nancy Roslyn Rappaport from [216.164.230.35], (at 11:34pm ET) I have good friends with a William's daughter. When should they expect to be able to determine the severity of her retardation. On the up side, they are both very musical...how can/should they encourage and foster that ability in her?
Dr. Howard Lenhoff (at 11:40pm ET) It is difficult to know when to determine the "severity" of the conditions. We found out from the school psychologists when Gloria was 6 or 7 years old, and their assessment still seems correct, except that they overlooked music.
The key of fostering music ability is to find the right teacher who will not require that the child learn to read musical notation, a most difficult task which my 44 year old daughter can not do yet, although her repertoire is enormous and difficult.
But weekly lessons are important. The easiest types of music for Williams people are voice, keyboard, and drums. Some play wind instruments, and very few play the guitar and string instruments. Williams people have many motor problems and their fingers are not always very agile. Most have child like handwriting, for example.
Parental support and encouragement help a great deal. The best tool that we have is our clapping hands to show approval.
In regards to teaching, Williams people learn best by taking one thing at a time. Thus do not try to teach them too much at one lesson, and do not make it cognitive. They learn best by ear. thus, we always tape record each lesson.
There is much more, and I am now planning to write a small booklet on teaching techniques regarding music and Williams people. Keep checking our web page.
Moderator (at 11:44pm ET) Howard, you've talked about how to foster musical ability in William's children. Can you give us an update on what Gloria's been doing recently?
Dr. Howard Lenhoff (at 11:44pm ET) The exciting thing about working to improve the music abilities of Williams kids is that there does not seem to be an end to what they can do. For example, in the program the TV crew just happened to be at Gloria's accordion lesson the first day that the teacher tried to teach her to name musical chords. As the program showed, Gloria was confused about the concept of chords, although she instinctively knew what chords to play at the right time. She just did not have a name for the chord, and as we know, the name is not important as long as you play the chord correctly.
Yet this winter Gloria got intrigued with naming chords, even though she had not a clue as to the theory of chords. But simply by hearing a chord, Gloria can instantaneously tell you whether it is a major, minor, diminished, augmented, 5th, 6th, 9th, suspended, major 7th, dominant 7th, or any combination of thus chords. She finds it fun to get the correct answer, but I enjoy more listening to her use these sophisticated chords in her music.
The past year has brought more surprises. This March Gloria played at the Opryland Hotel in Nashville and the at the Vanderbilt Medical School. On a Friday in June she was singing in the famous Wheeler Opera House in Aspen, Colorado, and two days later she was the featured soloist with a 65 piece orchestra in San Diego's East County Performance Center. Two weeks later she was entertaining with her accordion at a county 4th of July fair.
Does it end? Not yet. In the past 6 months Gloria has taken to playing the blues and rock on the piano. She composes, improvises, and this summer was the lead in a performance of a small band as vocalist and keyboard player.
She also was hired to play at nursing homes, and then to perform at the public schools in grades K through 8.
There is no doubt that if I had the time AND STRENGTH (the accordion weighs 26 lbs.) Gloria could make a living at her craft.
Kathleen Lynch from [63.10.30.136], (at 11:45pm ET) I would like to hear Gloria sing some more. Is it possible for her to make a recording? I would definitely be interested in buying a tape or CD.
Dr. Howard Lenhoff (at 11:47pm ET) Yes. We have audio cassettes for sale on our web page, www.wsf.org. However, why not invite her to perform for your organization in a fund-raiser type of situation? For example, this October she will perform at a $1,000/seat fund-raiser and it is almost a sell out already. But she loves performing and she travels a good deal doing just that.
Lorie Dunnam from [208.234.65.60], (at 11:53pm ET) My five month old baby girl has just been diagnosed with Williams' Syndrome. The geneticist told us that she could range from being learning disabled to retarded. As you are knowledgeable about other families, how unrealistic is it to expect that she may some day live independently and possibly be married, etc.? I cannot ever seem to get a clear answer on this.
Dr. Howard Lenhoff (at 11:54pm ET) A small number of Williams people do get married, and the marriages I have heard of are successful. However, you must realize that if a Williams person is married to a person without Williams, there is a 50 / 50 chance of the children also having Williams syndrome.
I do not believe that most Williams people will ever live completely independently. However, I think that supportive living with various degrees of independence is realistic. I am now 70 and am concerned about Gloria's welfare after I die. My goal is to have her in a supportive situation close to a music academy so that she will be always active in learning, teaching, listening, and performing music. She could have a very happy life that way.
That is why the Williams Syndrome Foundation is focusing on building music academies in several parts of the country, and then having long term supportive living opportunities adjoining those academies.
B. Smith - silverandstone@yaho from kansascity.corecomm.net (at 11:59pm ET) Drs. I am fascinated by your work and your tireless dedication to your vocations. How does one in need of neurological diagnosis/surgery pursue finding the right dedicated staff to do their best for one's child? where do parents go for emotional help, down time, rest?
Dr. Howard Lenhoff (at 11:59pm ET) Let me recommend that anyone who has a child with Williams syndrome contact and join the Williams Syndrome Association [wsaoffice@aol.com].
It is a wonderful organization consisting of over 4,000 Williams families. They sponsor workshops, support groups, regional and national meetings, etc. Most of the parents have either been through the same experiences or will soon be embarking on similar ones. It is amazing how much alike most of our Williams kids are. The Williams Syndrome Association has helped us all greatly.
Nancy Roslyn Rappaport from [216.164.230.35], (at 12:02am ET) For both of the doctors: Are there any specifics known as to problems during pregnancy and/or childbirth that are causal in either autism or Williams. Specifically, are there any indications that diet has any effect?
Dr. Howard Lenhoff (at 12:08am ET) In regards to Williams syndrome, basic genetics research has shown that the condition results when fertilization occurs with either a sperm or an egg that is missing a small piece of chromosome #7.
Thus, because Williams syndrome is determined at the act of fertilization, there is nothing that occurs during the gestation period from dieting or from smoking or taking an alcoholic beverage that will cause Williams syndrome. Thus, we now know that neither parent should feel guilty that they caused Williams syndrome. It is a chance event that we can not control and that is thought to happen in 1 out of every twenty thousand births.
Tom Hansen from cybertours.com (at 12:14am ET) I, too, am a professional in the field with a child who has a disability. I find it incredibly difficult to confront the challenges of being a father whose son has a disability while going to work trying to assist similar individuals. How do you separate the personal from the professional?
Dr. Howard Lenhoff (at 12:19am ET) That is a tough question to answer. By training I am a biochemist and a biologist specializing on simple invertebrates (animals without backbones). Yet at age 68, I started investigating music and Williams syndrome.
For one, to keep my objectivity, I help formulate the research strategy, but I never carry out the actual tests of my child and of the other Williams people. That is done by a bright, objective, and gentle graduate student.
For the analysis, I am fortunate to have as a collaborator a very able well-trained cognitive scientist.
On the other hand, I find that my training as a biologist, and my experiences in being a careful observer, have greatly helped me in the research. I see things that other parents do not see, that other scientists do not see. I learn the "tricks" of Williams people who often answer questions trying to please the questioner. They are very empathetic and can often psyche you out.
Likewise, as an observant parent, I am able to understand how Williams people answer questions. For example, they are very poor in making comparisons and in logical reasoning. So I work out ways to ask the questions, and the researchers can then carry through the work.
Moderator (at 12:24am ET) Thank you both for your time tonight. Our time is just about up for tonight, unfortunately. Howard, you mentioned that you have a final thought for tonight?
Dr. Howard Lenhoff (at 12:29am ET) Yes! I do not want anyone to think that we feel sorry for ourselves in having a handicapped child such as Gloria. As many parents will tell you, their handicapped child brings so much innocent love into the home.
And with Gloria particularly, we feel lucky and blessed to have her. She is an amazingly talented person who loves what she is doing and works hard at it. She brings happiness to people through her warm personality, which is quite common among Williams people, and her beautiful music.
In addition, she plays a very special role in educating we "normal" folks about the diversity and abilities present people who are otherwise considered handicapped.
I am used to being called Dr. Lenhoff, Professor Lenhoff, Dean Lenhoff, but the appelation that I am most proud of is being called "Gloria's father." In fact, that is how my business card is inscribed.
