At the WSA, we are committed to providing support and resources to as many people with Williams syndrome and their families as possible, regardless of their circumstances. No matter where our members live, their economic status, cultural background, what they look like, sound like, act like… happy or sad, spicy or sweet–we are here for them. We also want to make sure that everyone we support sees themselves in the stories we share.
Part of this effort is growing our relationships with the Williams syndrome specialty clinics. These clinics care for more individuals with Williams syndrome than any other healthcare provider. We’re working to ensure the clinics have the right resources to offer families, and that they share a new diagnosis in a way that is compassionate and helps families know that there is not one “kind” of Williams syndrome. In conversations with clinics, we’ve repeatedly heard two of the most common questions families ask when their child receives a Williams syndrome diagnosis: “What will life be like for my child as an adult?” and “What are adults with Williams syndrome like?” These questions remind us of the importance of emphasizing the fact that there is not one type of William syndrome. The familiar saying is true: When you’ve met one person with Williams syndrome, you’ve met one person with Williams syndrome.
We discussed this very topic at a recent meeting with Lurie Children’s Hospital and their incredible clinic staff. The very next day, Laura Spinney, our VP of programs, shared with me that her daughter Michaela, who is 26, had just looked at her during a car ride and asked, “Mom, what kind of Williams syndrome do I have?” When Laura asked her what she meant, Michaela replied, “Well, is my Williams syndrome different from other people‘s Williams syndrome?” Laura paused, then replied, "Is there more than one Michaela Spinney in this world?” Michaela said, “no.” So Laura said, “Well then yes - you have Michaela Spinney Williams syndrome! And that’s different from any other Williams syndrome.” I don’t know about you, but I can’t count how many times I’ve been caught totally off guard by a profound statement or question like the one Michaela asked Laura. And again, what an incredibly crucial reminder it is that all of us, including and maybe especially our loved ones with Williams syndrome, have a biological, cultural and familial make-up that makes everyone unique - and makes everyone’s Williams syndrome different.
We can’t pretend that there’s a one size fits all solution for anything associated with Williams syndrome. And not everything that happens to our loved ones with Williams syndrome is because of Williams syndrome. This is easy to forget. I can’t tell you how frequently we get calls or we see on social media someone asking if a certain symptom is related to William syndrome? And it’s not just parents… medical professionals, teachers, care providers, and case managers make the same assumptions, too.
There is no one type of WS. As we wrap up October, which is National Disability Employment Month, we’re reminded that there’s no “one size fits all” job for people with WS. The right job will look as different as each individual with WS - full time, part time, sometimes, or one time; paid or volunteer; stepping into an existing role, creating a role that fits best for the individual, or creating a business that the individual finds fulfilling; national chain or small town opportunity; customer service, administrative, entertainment, pet care, child care, helping others; quiet or high energy. In the end, the goal is finding something that enhances the life of the individual and helps them feel the sense of belonging, self worth, and accomplishment that comes from these opportunities.
This is what makes serving as many families affected by Williams syndrome as possible so challenging. Although there are genetic commonalities and symptoms and challenges that occur more frequently, there is no one-size-fits-all Williams syndrome experience. So designing programs to serve people with Williams syndrome and their families is incredibly complex. Making sure that the guidelines we provide are thorough and have the consensus of experts is complex. We know that not all of our programs we host at the WSA are a good fit for everyone with Williams syndrome. We know there are people out there who need things we don’t currently offer or support. As we continue to prepare for strategic planning for the future of the WSA, I want to make sure we’re hearing from ALL of you! If you feel like the WSA provides exactly what you and your family needs - tell us. And if you feel the WSA doesn’t provide any value to your family or your loved one with WS - TELL US what you do need! If you didn’t complete our survey yet, please take a few minutes to share your thoughts. We’re also hosting another town hall discussion for parents/caregivers and two discussions with adults with WS so we can learn more about what YOU need as we plan for the future. We hope to hear from each and every one of you!
I’m grateful that we now have 5 staff members who are parents of individuals with WS. And they are ALL indeed, VERY individual and unique. Michaela’s WS is different from Matthew’s WS - though there are many similarities. Matthew’s WS is different from Bennett’s WS - though they have many similarities. And Bennett’s WS is different from Will’s WS. And Will’s WS is different from Enrique’s WS. It’s a beautiful reminder for all of us that though they all have this commonality that binds us together and has created what can feel like one big happy (and sometimes not so happy and dysfunctional) family with thousands of others in this world, they (just like the rest of us!) are all unique human beings.
Grateful to be on this journey with all of you,
Sarah
Sarah Schaefer
Executive Director