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First Steps: The First One Hundred Days

Your child has just been diagnosed with Williams syndrome - what do you do now?

There are several things you should do as soon as possible:

  • Address whatever medical and developmental challenges your child is facing. There are a number of typical problems associated with WS. Your child may currently be experiencing one or several. It is most likely that one of these problems is the reason your child was diagnosed with Williams syndrome in the first place. You'll want to have your child evaluated for these typical issues first. Descriptions of the characteristics of Williams syndrome can be found in the What is Williams syndrome page of the WSA website at the following link:  What is Williams syndrome
  • Make sure your Pediatrician has both the WS-specific Growth Chart and the Policy Statement from the American Academy of Pediatrics. These are important guidelines that your pediatrician needs to have on file for your child. These can both be found on the WSA website at the following links:

WS growth charts 
Health Care Supervision for Children With Williams Syndrome 
Anesthesia concerns

  • Check the current list of WS specific clinics available around the country to see if there are any in your area. If there are, consider a visit to the clinic for consultation and have your child evaluated. You can find the list of clinics on the WSA website at the following link:   WS clinics
  • Join the WSA. Membership is complimentary and you will gain access to a wealth of information and benefits, which you can see at the following link:   WSA membership benefits
  • Contact your Regional WSA Coordinator for consultation about local services, events, and making contact with other local parents of children with Williams syndrome. The list of regional coordinators can be found at the following link:   WSA Regional sites   
  • 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. Our main page: WSA Facebook page. Follow us. From there you can find your region's page and join that. There is also a parent/caregiver group called WS Support
  • Use our Ask the Expert series to participate in live webinars, or view past ones on different subject matters related to WS.