Parents Roadmap To Williams Syndrome

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Learning that your child has a syndrome can be overwhelming.  Accepting the news emotionally, dealing with immediate medical concerns, and preparing for ongoing development issues can make every day go by in a blur for days, weeks or even months.  Rest assured that you are not alone in the process. 

When you are ready, you will want to get oriented to what the next steps should be. The following information will help you create a "roadmap" to your child's future.

What to do first

  • First steps for new parents
    This initial roadmap provides keys areas to look for information when you are just getting started in your journey with Williams syndrome. Use these steps to start off on the right foot. 
     
  • What is Williams syndrome?
    This is the WS Facts brochure. It provides an introduction to many of the aspects of Williams syndrome.

    This brochure is also available in Spanish, in html or pdf format.

  • Frequently asked questions
    Find answers to the most commonly asked questions about Williams syndrome here. 
     
  • Williams syndrome clinics
    There are several clinics across the nation that specialize in the treatment of individuals with Williams syndrome. You can find the most current list of clinics here. 
     
  • WSA membership
    Membership in the WSA provides access to many additional resources, including the quarterly Heart to Heart newsletter which is filled with timely and informative articles by parents, professionals, researchers and doctors dealing with Williams syndrome. 
     
  • Fulfilling Dreams - The WS Parent Handbook
    The Williams Syndrome Association's handbook for parents. This 300+ page handbook contains practical advice, ideas, insights and information for parents of people with Williams syndrome from infancy through school years, adolescence, transition to independence, and adulthood.
     
  • A personal note from the Director...
    Will your child be at the top of the bell curve? Does it matter? Read a personal note from the Director of the WSA here. 
     

Next steps

  • Age appropriate information
    As children develop from infants to toddlers to school age to adults they will encounter a number of issues unique to their age group. The issues and guidelines listed in this section are primarily medical, social and cognitive. General development varies widely among individuals with Williams. There is no definitive guide for developmental milestones, but these averages should help. 
     
  • Therapeutic intervention
    Individuals with Williams syndrome will generally benefit from therapeutic intervention such as occupational therapy (OT), physical therapy (PT) and speech therapy. Overviews of these therapies are discussed here. 
     
  • Additional therapies
    Some individuals with Williams syndrome may also benefit from non-traditional therapies. Overviews of therapies which have been effective for some children with Williams syndrome are discussed here. 
     
  • Creating IEPs
    An IEP is your child's roadmap through the public school system, as defined by the Individuals with Disabilities Education Act (IDEA). The IEP process can be a frustrating experience for many parents. Find out the basics here. 
     
  • Available aid and assistance
    There are several areas where financial and/or services assistance may be available to you and your child. Find out where to look here. 
     
  • Other resources
    There are a number of organizations providing support and services either to children with Williams syndrome, or children with disabilites in general. Visit this resource page to get started in your search for additional resources. 
     
  • Financial concerns
    You want to prepare for your child's financial future. Should you start putting assets into his/her name now? Visit this page for important information. 
     
  • Music and Williams syndrome
    An extremely unique link exists between music and individuals with Williams syndrome. You can find information about that relationship here.