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.
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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.
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.