The following section contains introductory information for parents of infants and toddlers with Williams syndrome.
This information is also provided in the Fulfilling Dreams book.
WHAT IS WILLIAMS SYNDROME
The question, "What is Williams syndrome?" is not easily answered.
If you are in the scientific community and not personally affected by Williams syndrome, the answer is fairly simple - Williams syndrome is a rare genetic disorder. It occurs in approximately 1 in 10,000 live births when a small amount of genetic material is lost on one of an individuals chromosome #7s. The lost material, contains approximately 28 genes, but most notably elastin which is the marker gene for WS. The microdeletion occurs spontaneously. It is not inherited, and parents (unless one or both of them have WS) are not carriers of the deletion. Williams syndrome is not a childhood disease like chicken pox or measles. Your child will not outgrow Williams syndrome, and the medical community cannot cure it or prevent it from happening in future generations with a special immunization program.
Unfortunately, the scientific definition of Williams syndrome tells us, as parents, very little. What we really want to know is not, What is Williams syndrome? But rather, how will Williams syndrome affect a child with the diagnosis. This question is much more difficult to answer, and unfortunately, is not precisely the same for everyone. In this section, we will provide places to look for the short answer to the question. Throughout the rest of the website we will try to provide the long answer; an in depth discussion of the myriad of possible characteristics and traits that will add up to how Williams syndrome may affect your child over the course of his lifetime.
The first and most important thing that you must remember as parents, is that you do not have a Williams syndrome child. You have a child with Williams syndrome. In other words, Williams syndrome is not who your child is. Your child will have many characteristics that are directly related to WS, and just as many that are not. It is important to remember that your child is an individual first and foremost; affected by his environment, his experiences and the people around him just like every other child. And like those children, he or she will have many characteristics you would expect - characteristics like blue eyes, or red hair, or short legs, like others in your family. He or she also has Williams syndrome, and the deletion that defines Williams syndrome will lead to additional characteristics in your child that are not shared by others in your family, or typical of most other children you know.
The list of typical ways that WS may affect your child seems long:
- Cardiac disorders
- Excellent long term memory
- Low birth weight
- Excellent memory of faces
- Developmental delays
- Very endearing personality
- Overly friendly
- Learning disabilities
- Unusually compassionate
- Feeding difficulties
- Very talkative
- Excellent vocabulary
- Perceptual/spatial difficulties
- Strong passion for music
- Small stature
- Small, widely spaced teeth
- Stiletto patten in blue eyes
- Poor fine motor skills
But the news isn't all bad, and as parents you will do your best to provide treatment for each of the characteristics that your child develops in order to accentuate the positives, and minimize any adverse affects. Treatments for some of the characteristics will be as simple as using a consistent approach to teaching a task, or repeating the skill more times than is typical for other children before it is mastered. Other characteristics will call for treatments involving the help of therapists and other specialists to help overcome delays and deficit areas, and some tasks may never be learned quite to perfection. Some medical problems caused by the genetic deletion may require nothing more than close observation by a doctor, or simple medication. Others may require surgical intervention or lifelong medical management.
In short, Williams syndrome is a genetic disorder that can lead to many different characteristics in your child. Some children will display most of the characteristics on the list we provided, others may display a much smaller number. Still others will develop characteristics only found on the most comprehensive lists and shared by only a handful of individuals.
Most individuals with Williams syndrome will be small at birth and have feeding difficulties as infants. They may be very fussy babies who continue to grow at a slower than normal pace. As toddlers, developmental delays are often noticed; major milestones such as walking and talking often occur 1-2 years later than expected. Mild to severe cardiovascular disorders are present in 75% of individuals with WS, and problems such as chronic ear infections, strabismus and overly sensitive hearing are typical.
Speech is often late to emerge, but becomes a strength as children quickly develop excellent vocabularies and are quite talkative with a unique, and often disarming use of adjectives and adverbs. Learning disabilities are typical and can be quite severe in some children. Almost all children require some degree of special education assistance, and attention deficit disorders are quite common. Children are often overly friendly with very outgoing personalities, but they have difficulties relating to peers and often prefer the company of adults. Individuals with Williams syndrome have spatial integration difficulties that can make mathematics and related tasks almost impossible. Most individuals with WS share a passion for music and many display musical skills that far surpass their abilities in other cognitive areas.
As a disorder, Williams syndrome is unique. Its presence leads to both strengths and weaknesses in a person. Individuals with Williams syndrome, regardless of their measured IQ or academic placement, have much to give. Watch closely and listen intently, as your young child with Williams syndrome makes his way in this world. You will find that he can teach you as much as he can learn from you...