Williams Syndrome Educational Resources
Williams Syndrome Explained - Guides for Explaining Williams Syndrome
The tools below are meant to be used as a guide for parents , caregivers and teachers to use to answer many questions children may have about Williams syndrome.
If you would like a personalized guide, you may order one by clicking here and offering a donation of $1.00 or more.
Early Intervention
Williams Syndrome Explained - Guides for Explaining Williams Syndrome
The tools below are meant to be used as a guide for parents , caregivers and teachers to use to answer many questions children may have about Williams syndrome.
If you would like a personalized guide, you may order one by clicking here and offering a donation of $1.00 or more.
Early intervention services are designed to meet the needs of infants and toddlers who have a developmental delay or disability. Sometime children are diagnosed at birth with a Williams syndrome. Even before heading home from the hospital, this child’s parents may be given a referral to their local early intervention office.
Other children are diagnosed later, but still qualify for Early Intervention Services through their third birthday. For these children, a visit with a developmental pediatrician and a thorough evaluation may lead to an early intervention referral. However a child comes to be referred, assessed, and determined eligible—early intervention services provide vital support so that children with Williams syndrome can thrive and grow.
Children with Williams syndrome typically have global developmental delays, so physical, occupational and speech therapy is often needed to improve gross and fine motor skills as well as speech, language and communication skills.
There are several ways you can find help for your child. Since you are reading this article, we recommend that you go to the NICHCY State Specific Resources page, select your state, and find the listing for the early intervention program in your state. It’ll be in the first section of the State Resource Sheet, under “State Agencies.” Look for a title such as “Programs for Infants and Toddlers with Disabilities: Ages Birth through 2″ or “Early Intervention.” Call the agency listed. Explain that you want to find out about early intervention services for your child. Ask for the name of a contact person in your area.
If you don’t have a State Resource Sheet for your state, visit the website at: http://www.nichcy.org/state-organization-search-by-state. All State Resource Sheets are available there. You can also call NICHCY at 1.800.695.0285 and ask one of the information specialists to give you the number for early intervention services in your state.
Educational Information
Every child has the right to a free appropriate education. The Individuals with Disabilities Education Act (IDEA), enacted in 1975, mandates a public education for all eligible children and makes the schools responsible for providing the supports and services that will allow this to happen. IDEA was most recently revised in 2007 (and, in fact, renamed the Individuals with Disabilities Education Improvement Act, but most people still refer to it as IDEA). The law mandates that the state provide an eligible child with a free appropriate public education that meets his or her unique individual needs. IDEA specifies that children with various disabilities, including Williams syndrome, are entitled to early intervention services and special education. In addition, the IDEA legislation has established an important team approach and a role for parents as equal partners in the planning for an individual child, and promotes an education in the least restrictive environment. In addition to the IDEA stipulations, the Americans with Disabilities Act of 1990 (ADA) sets forth, as a civil right, protections and provisions for equal access to education for anyone with a disability. Section 504 of the Rehabilitation Act of 1973 is another civil rights law that prohibits discrimination on the basis of disability in programs and activities, public and private that receive federal financial assistance. Generally, the individuals protected by these laws include anyone with a physical or mental impairment that substantially limits one or more life activities.
Advocating for your child’s education is a very important role, and at times can seem overwhelming and confusing. Two books that may be helpful are Wrightslaw: From Emotions to Advocacy - The Special Education Survival Guide, by Pam Wright and Pete Wright and Wrightslaw: All About IEP’s. It is very important to be familiar with the IDEA website so you understand the law and the rights of your child.
After your child turns 4, special education services pick up where early intervention services leave off, at age 3. Your local school district provides these services through their special education department. The focus of special education is different from that of early intervention. While early intervention addresses your child’s overall development, special education focuses on providing your child with an education, regardless of disabilities or special needs. The document that spells out your child’s needs and how these needs will be met is the Individualized Education Program (IEP). Like the IFSP, the IEP describes your child’s strengths and weaknesses, sets goals and objectives, and details how these can be met. Unlike the IFSP, the IEP is almost entirely related to how the needs of your child will be met within the context of the school district and the school itself.
When entering the school system, many parents find it helpful to provide a “profile” of your child to all individuals involved in their education and therapy. Each child with Williams syndrome is different and many educators and therapists have never heard of Williams syndrome or worked with a child with Williams syndrome.
Provide specifics about how your child learns, his or her specific areas of strength as well as areas of weakness. Be sure to include any sources of anxiety, obsessions, fears and any safety issues. Individuals with Williams syndrome are particularly social and trusting and it is important to advise everyone involved in your child’s education of this particular safety concern.
Provide detailed information of your child’s medical history and concerns. Most children, along with developmental and cognitive delays, also have multiple medical issues and it is import to keep the child’s school apprised of medications the child is on and any precautions that should be considered.
Most individuals with Williams syndrome have learning disabilities, however they can range from mild to severe. A child with Williams syndrome does not fit a specific learning profile, but there are commonalities amongst individuals that tend to be seen.
Most individuals with Williams syndrome are highly sociable and have a very expressive vocabulary. This tends to lead to an assumption that their IQ is higher than it is. Many individuals have excellent auditory memory skills and the knowledge tends to be retained. Many individuals require repetitive assistance in obtaining the knowledge, but once, mastered, it is typically retained.
Visual tools for learning tend to work best for children with Williams syndrome. When possible, provide visual or picture tools for learning as well as for schedules and routines. Individuals with Williams syndrome tend to perseverate on upcoming events, such as field trips and/or special activities at school. Using a visual schedule for upcoming events may assist in managing their anxiety about the subject or event.
Incorporate music into the learning program whenever possible. Many individuals with Williams syndrome have an affinity for music and it tends to assist in task oriented activities as well as having a calming or relaxing effect on the child.
Try to promote appropriate social interaction. Individuals with Williams syndrome tend to be very social, however typically, they prefer interactions with adults rather than peers and their social interactions can be limited to their interests. This does affect their ability to establish and maintain relationships with peers. Teaching appropriate social skills and providing social skill training can be very important.
Individuals with Williams syndrome have hyperacusis, or a heightened sensitivity to certain frequency of sounds. This can have an advantage when applied to reading. A phonics approach to reading has been found to work best as this allows for the learning if the sounds of the letters first before learning the letter combinations. Hyperacusis can also contribute to anxiety. A school bell or fire alarm can cause a great deal of anxiety and fear into an individual with Williams syndrome. Parents have found it important, if at all possible, to provide a warning for any predictable sounds that can be anxiety-provoking.
Keep distraction minimal in the classroom. Small class sizes usually work better and limiting any distractions in the classroom as well as on any worksheets or work areas. Direct interaction works best as it assists with concentration on the task.
Provide Direct Instruction. Avoiding figurative speech can be important, as individuals with Williams syndrome typically have literal understanding. A statement such as "busy as a bee," or "clean as a whistle" can be very confusing to an individual with Williams syndrome. They interpret the literal meaning of these phrases, while a typical person would know that you were making reference to someone being very busy and something being very clean. It has been found helpful to provide step by step instruction until the child masters each level of instruction. Start with one step commands, then move to two step and so on.
