Williams Syndrome is a rare genetic condition that few people have ever heard of it. Out of about 7, 500 newborns, only one will have it. If you ever have the opportunity to me a Williams's child, be prepared to have a day filled with music laughter and enormous amounts questions. Williams Children have an unforgettable personality filled with joy and laughter. They love to move to the rhythm of music and are extremely curious towards everyone they meet. This is why they ask an enormous amount of questions that may not always be appropriate questions to ask someone they have just met. Williams's children are sure to impact any individual's life and give them and whole different outlook and view of the world and people in it. "It is the type of personality seen only occasionally beyond the world of Williams Syndrome". (Sancho & Mendelsohn, 2011)
"Like Down's syndrome Williams's syndrome is caused by an abnormality in chromosomes. Williams Syndrome is caused by the deletion of roughly twenty-five genes on chromosome seven. The deletion can occur randomly during the production of a sperm or egg cell. Though there are 20,000 to 25,000 genes in the human genome, even the loss of just 25 genes can have profound effects on a person's physical, behavioral and cognitive make-up". (Sancho & Mendelsohn, 2011)
"When diagnosing Williams Syndrome there are common facial characteristics to be aware of. Characteristics common to Williams's syndrome are a broad forehead, a short nose with a pointed tip, full rounded cheeks, a wide mouth with full lips, and pointed ears". Many would compare their features to an elf. (Williams's syndrome, 2008)
Many individuals With Williams Syndrome have a considerable amount of health issues that could worsen when moving from childhood to adolescent and adult. "Individuals with Williams's syndrome suffer from having heart disorders, typically supravalvular aortic stenosis (SVAS), which is a narrowing of the aorta. Kidney and bladder problems are also common. Poor muscle tone and problems with the skeletal joints become evident as a child with Williams syndrome moves into adolescence. ("The encyclopedia of Children's Health," 2012)
As a baby issues that may come across when diagnosed with Williams syndrome is a low birth weight and are often diagnosed as failing to thrive. Higher levels of calcium in the blood (hypercalcemia) may develop in infancy, but this usually resolves without intervention in the first two years. Digestive system symptoms such as vomiting, constipation, and feeding difficulties may occur. An infant with Williams Syndrome may not settle into a normal sleep pattern and may also be extremely sensitive to noise, displaying agitation or distress when exposed to high-pitched sounds, such as electrical appliances beeping, birds chirping, and loud bangs. Heart failure is also a risk due to narrowed blood vessels. (The encyclopedia of Children's Health,2012)
When confirming the diagnosis of Williams Syndrome there are certain tests and diagnosis that can be done. A Clinical diagnosis is strictly based on a variety of characteristics common to Williams's syndrome. Although the facial features are evident in Williams syndrome it does not determine the diagnosis. "It is important to stress that Williams Syndrome is a genetic diagnosis and an individual who does not have the gene deletion does not have Williams's syndrome. For example although a person who was clinically diagnosed with Williams Syndrome may not have a chromosome deletion. The chromosome deletion is the only way to determine Williams Syndrome as a disorder". (WSA, 2011)
"A test proven to confirm Williams's syndrome more accurately then a clinical diagnosis is a FISH test "Fluorescent in situ hybridization." (WSA, 2011) FISH is a type of specialized chromosome analysis utilizing specially prepared elastin probes. If a patient has 2 copies of the elastin gene (one on each of their chromosomes #7), they probably do not have Williams Syndrome. If the individual only has one copy, the diagnosis of Williams Syndrome will be confirmed. Virtually all (98-99%) persons with Williams syndrome will have a deletion of the elastin gene along with about 26 other genes. These genes comprise the "Williams syndrome critical area" on Chromosome number 7". (WSA, 2011) The FISH test gives more clear cut answers to diagnosing Williams syndrome rather than a clinical diagnosis's that does not always give back accurate results.
Children with Williams Syndrome are usually excessively outgoing and extremely social towards strangers and individuals they already know. They are constantly smiling and greeting everyone they encounter. Hugs, high fives, pats on the back and most importantly music brighten a Williams Child's day. They are also talkative, and have an obsession for topics that interest them and love to ask questions based upon those interests. Questions like, "What's your favorite color?" "Do you like girls?" "Have you met Barney the Dinosaur?" (Sancho & Mendelsohn, 2011)
By the time a child with Williams's syndrome is ready to enter school, both physically and cognitive difficulties may appear. Difficulties with vision such as seeing the blackboard and involving numbers in an everyday concept such as math and time are more difficult for children with Williams Syndrome to comprehend. (WSA, 2011) "In a child's later elementary school years, a child with Williams's syndrome may be more adept at producing language than at comprehending it. Poor muscle tone and physical development continue to contribute to difficulties with gross and fine motor skills. (WSA, 2011) A child with Williams Syndrome may have more of a struggle forming relationships rather than a child without Williams Syndrome. Williams Children prefer the company of younger children or adults rather than children in their own age group.
A parent who has a child with Williams Syndrome may say it is a condition that produces a very loveable child, one that embraces life and wants to help everyone. Some parents might even say Williams Syndrome is a curse and a blessing. This syndrome is a blessing because they have the ability to change our outlook to the world. They embrace life and do not waste it by complaining or even fearing the outside world. They take on life and are sure to make a new friend every step of the way, but as much of a blessing this syndrome can be it still has a negative effect on parents. "A curse in the sense of all the medical issues but even more importantly the innocence and trust Williams children give towards strangers. Although they view the world and people as trusting, realistically the world can at times be downright mean". (Sancho & Mendelsohn, 2011)
"In an experiment, Tager-Flusberg has a stranger enter a room. And not just any stranger, but one was wearing a baseball cap and dark sunglasses. As you would guess, children without Williams avoid the stranger. Children with Williams, however, often engage the stranger in conversation, and in one case we saw a child even offered a toy for the stranger to play with". (Sancho & Mendelsohn, 2011)
"Such social innocence can have real-life consequences, and that extends to adults with Williams Syndrome. Kelley Martin, 34, of Westwood, N.J., has Williams Syndrome; she was bullied by a so-called friend into paying for that friend's expenses. Kelley's mother, Anne, realized what happening $1,500 was later". (Sancho & Mendelsohn, 2011)
It is truly unfortunate how unfair and cruel the world can be towards people, especially if they are so innocent and trusting, making it even easier for someone to take advantage of their kind acts. As a parent who has a child with Williams syndrome they know that they must keep a close eye on their child. They are capable of running off in a second to engage with anyone in their range of sight.
"In one case a family with a 9-year-old daughter, Isabelle, who has Williams and consequently feels no social fear got into another family's car and buckled up after hearing the mother say they were going to Dairy Queen". (Sancho & Mendelsohn, 2011) This story is just one of the many where Williams children have gone off with strangers causing their parents to live every day in fear for their child.
"Although there is no cure for Williams's syndrome, nor is there a standard course of treatment, due to the fact that Williams Syndrome is an uncommon and complex disorder. People with Williams Syndrome require regular cardiovascular monitoring for potential medical problems, such as symptomatic narrowing of the blood vessels, high blood pressure, and heart failure". ("National institute of," 2008)
"Nearly every individual with Williams syndrome will benefit from therapeutic intervention to help overcome developmental delays, joint problems, fine motor issues and other characteristics common to Williams syndrome". (Williams Syndrome Association, 2011) There are three main options for therapeutic interventions to prevent any developmental delays. Physical therapy is on therapy designed to help children with Williams Syndrome. This therapy is helpful to deal with joint stiffness and improve balance. Occupational therapy primarily addresses fine motor skill development in children with Williams's syndrome, but is also a source of help with feeding issues and sensitivity to textures. Children with Williams's syndrome often have difficulties with fine motor control, such as picking up small objects as well as speech delays. (Williams Syndrome Association, 2011)
Music therapy is also proven to help the cognitive and physical abilities in Williams Children. Music therapy involves teaching and strengthening all nature of other cognitive and physical abilities through the use of music. It utilizes a child's natural love of music to help them improve other tasks". (Williams Syndrome Association, 2011)
"Hippotherapy can have benefits to children with Williams syndrome, as with any child with a disability. Hippotherapy is a term that refers to the use of the movement of the horse as a treatment tool by Physical Therapists, Occupational Therapists, and Speech-Language Pathologists to address impairments, functional limitations, and disabilities in patients with neuromusculoskeletal dysfunction. Therapeutic riding addresses self-esteem and emotional well-being as well". (Williams Syndrome Association, 2011)
Williams syndrome is a form of rare genetic disorder that is characterized by mild to moderate learning difficulties or mental retardation. "There are no two individuals who have this syndrome who have the exact same problems. People with Williams syndrome have varying prognosis. Williams syndrome have the ability to live independently, completing vocational or academic school and living on their own or in supervised homes, the majority of people with this disorder live with a caregiver". (Taormina-Weis, 2012)
When involving a child with Williams Syndrome into classroom there are many precautious that you as ECE can follow to make the classroom environment appropriate for a Williams child to learn. Minimize visual and auditory environmental distractions and as well be conscious of the fact that sounds such as the fire drill, school bell, etc. may result in the student becoming anxious and may also lead to behavior problems. If possible, provide warnings prior to predictable noises. Use visual materials such as illustrations, videos, photographs, when teaching. Often the student with Williams syndrome finds this approach to teaching very motivating and is more likely to sit through the lesson with no disturbances. (Williams Syndrome Association, 2011)
When encouraging social interactions, incorporate the buddy system in the classroom as well as group work and circle time. This will encourage the Williams children to have one on one social interactions and relationships with their classmates. Children with Williams's syndrome are very easily distracted and can get lost in a large group, keep group work to a minimum of students allows the child to minimize distractions and promotes direct interactions with the students. When incorporating music and songs within circle time Williams children will show more of an interest to being there considering that they learn better through songs and it is easier for them to remember things through song. (Williams Syndrome Association, 2011)
To improve fine motor skills within Williams children provide a brief daily practice to improve handwriting rate and legibility. Practices can involve tracing their names and other simple words. Addressing and displaying proper positioning of the hand when grasping the pencil to write and as well as focusing on only one aspect of writing at a time so the child is not over whelmed or distracted. (Williams Syndrome Association, 2011)
Community Services and Agencies
One of the most popular associations in Ontario that support Williams Syndrome, is a nonprofit association called the Canadian Association of Williams Syndrome. Their locations are spread all across Canada. The Toronto location is run by Monique & John Plessas at 163 Wolverleigh Boulevard Toronto, ON M4C 1S1 contact number, (416) 269-7030. ("Canadian association for," 2003)
The Canadian Association of Williams Syndrome (CAWS) was founded by a group of parents in 1984. The CWAS is non-profit association that supports families and the child who is diagnosed with Williams Syndrome. This association is now helping 350 families and it is continuing to grow and spread awareness and information on Williams Syndrome" ("Canadian association for," 2003) "The CAWS goals are to support research into the educational, behavioral, social and medical aspects of Williams's syndrome. Also to increase society's awareness of CAWS so individuals with Williams syndrome and their families have a resource available to them. Become visible to the medical scientific, educational and professional communities by providing information on Williams syndrome". ("Canadian association for Williams Syndrome, 2003)
"These combined goals will improve the integration of individuals with Williams's syndrome into society and help to educate society as a whole". CWAS wants to advance and assist education, research and knowledge of the medical condition described as Williams Syndrome and to participate in research projects and efforts to assist those with Williams Syndrome in achieving full status in the community such as schools, employment and housing". ("Canadian association for Williams Syndrome, 2003)
A second association in raising awareness of Williams Syndrome is The Williams Syndrome Association (WSA). The WSA was formed in 1982 by and for families of individuals with Williams's syndrome. The WSA is a source of resource for people and families living with Williams's syndrome as well as doctors, researchers and educators. The WSA provides the latest medical information, information for educator now how to support and cater to the needs of a child with Williams Syndrome in the classroom as well as a vast amount of information for parents. (Williams Syndrome Association, 2011)
"The WSA is run primarily by volunteers. We are parents, grandparents, relatives and legal guardians of people with WS. We know first-hand the challenges of raising and caring for an individual with special needs" (Williams Syndrome Association, 2011). To reach the WSA contact www.williams-syndrome.org to connect and share information 24/7". (Williams Syndrome Association, 2011)
"The programs of the Williams Syndrome Association are designed to support individuals with Williams's syndrome and their parents are music therapy based camp for young children ages 6-12, a recreation and enrichment camp for ages 13 - 30, music and enrichment camps for teens ages 13 - 17 and young adults, ages 18-3o and a CIT/Leadership program for adults 31 and older". (Williams Syndrome Association, 2011)
I chose this topic because I feel that this disorder is so fascinating and the children and adults who have this disorder are so inspiring and can truly teach us all about having an open and welcoming mind towards others. Being able to welcome anyone in your life and genially wanting to help people is a true blessing. Today's society is so croqueted and fearful of the outside world, to the point where they want to keep indoors and avoid any human contact with someone they do not know. The reasoning of this is because we were raised to trust no one. Anyone who dresses differently or is of a different ethnicity or color can be a threat to us. Williams children are raised to not be as friendly, they do not see people based on their clothing or color, and they most certainly do not pick or choose who they want to be friends with. Personally I believe that it is everyone else who has a disability because we are not as kind hearted and welcoming to individuals as those with Williams Syndrome are. Personally I believe that everyone should inspire to have a little bit of Williams Syndrome within them.
If I was the parent of a child with Williams Syndrome in order to support my child in coping with social situations, and developing appropriate relationships outside of the home I would teach them that it is okay to say hello to strangers when I am present, but to never approach a stranger or talk to them when you are alone. To develop appropriate relationships with other children I would have my child involved in extra circular activities so they are associated with other children. Seeing that Williams Children love music, I would always try to have my child in social activities when music is involved, such as dance classes or playing a musical interment.
Some of the most serious concerns that I would have about my child if given this diagnosis would be there well-being and health. Many children born with Williams Syndrome are at risk for heart failure due to narrowed blood vessels. This is a major concern to me because I do not want my child to have any heath complications. Also another concern would be losing my child due to the fact that they gravitate towards anyone they see. Losing a child or having them stolen is a parents greatest fear. To prevent this from happening I will constantly have rules and lessons within the household about not answering the door to anyone, as well as not leaving to house unless I am with you. To enforce these rules reminders will be needed which is why I would post signs on every door reading "Do Not Answer", or "Do Not Open".
Over all I feel that everyone should be educated and introduced to Williams Syndrome. It is such a rare and complex disorder, but has such a wonderful outcome. Williams children are a true inspiration that have such a positive effect on the people around them. We as people should strive to have a bit of Williams syndrome in us each day.
Reference Page Mnedelsohn, M., & Sancho, M. (Photographer). (2011). Friendly to the extreme: Meet kids and adults with williams syndrome. [WebVideo].Retrieved from http://abcnews.go.com/Health/friendly-extreme-meet-kids-adults-williams-syndrome/story?id=13795416
The encyclopedia of children's health. (2012). Retrieved from http://www.healthofchildren.com/U-Z/Williams-Syndrome.html
Williams Syndrome Association. (2011). Therapeutic interventions. Retrieved from http://www.williams-syndrome.org/parent/therapeutic-interventions
National institute of neurological disorders and stroke. (2008, September 09). Retrieved from http://www.ninds.nih.gov/disorders/williams/williams.htm
Taormina-Weis, W. (2012, February 18). Williams syndrome - facts and information. . Retrieved from http://www.disabled-world.com/health/neurology/williams-syndrome.php
WSA. (2011). Diagnosing williams syndrome. Retrieved from: syndrome.org/diagnosing-williams-syndrome/diagnosing-williams-syndrome