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. 

Often times, just knowing where to start can be helpful. Listed below are some important "first steps" to take when you are ready, They will help you create a "roadmap" to your child's future.

WHAT TO DO FIRST

  • LEARN ABOUT WILLIAMS SYNDROME. Use the What is Williams Syndrome section of the site as an easy way to start becoming familiar with WS. 

  • DOWNLOAD GENERAL RESOURCES FOR QUICK REFERENCE

  • PROVIDE YOUR CHILD'S PHYSICIAN WITH IMPORTANT MEDICAL GUIDELINES:  It is likely that your child's physician has very little knowledge of Williams syndrome or the annual testing that should be done. Therefore you will want to be sure your child's physician has the most current and relevant medical references for Williams syndrome. You should also provide all physicians with the ICD-10 code for Williams syndrome, which is #Q93.82. Click the links below for the important guidelines that your child's physician should have on file for your child.

  • ADDRESS MEDICAL ISSUES: There are a number of medical problems associated with Williams syndrome.  Even if your child is not currently experiencing symptoms for any of these problems, you will want to have a thorough evaluation made to be sure. Asking your physician to examine your child in accordance with the healthcare supervision guidelines listed above, and providing him/her with descriptions of the characteristics of Williams syndrome can be extremely helpful.  Descriptions of the most common characteristics can be found here.

  • DETERMINE IF THERE IS A LOCAL WS CLINIC NEAR YOU: Check the current list of WS specialty clinics available around the country to see if there are any in your area. At least one valuation by physicians who specialize in Williams syndrome can be very helpful.

  • JOIN THE WSA. Membership in the WSA is complimentary and will provide you with a wealth of information and benefits. Check out the benefits of being a member and join today!

NEXT STEPS

  • CONNECT WITH LOCAL RESOURCES: Contact the Family Support Specialist in your area for a consultation about local services, events, and making contact with other local parents of children with Williams syndrome.    
  • CONNECT WITH OTHER PARENTS: Ask questions to one of the best resources available - other parents who have walked your path. Communicate with hundreds of other parents on the Williams syndrome Facebook pages. The best places to start to "Like" and "Follow" the WSA Facebook page, find your state/region's group and join that, and join the parent/caregiver group called WS Support. 

AS THEY GROW

  • PARTICIPATE IN WEBINARS Use our Ask the Expert series to participate in live webinars, or view past ones on different subject matters related to WS. 

  • THERAPEUTIC INTERVENTION Individuals with Williams syndrome will generally benefit from therapeutic intervention such as occupational therapy (OT), physical therapy (PT) and speech therapy. Some individuals with Williams syndrome may also benefit from non-traditional therapies. Overviews of all these therapies 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 RESOURCE ORGANIZATIONS There are a number of organizations providing support and services either to children with Williams syndrome, or children with disabilitIes 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.