Hi everyone!
Hope you’re all well, and that you’re able to take a few moments to enjoy the beauty during this time of year. I’m sitting in Philadelphia after meeting with a few local families and getting a sneak peek at the Armellino Center of Excellence for Williams Syndrome, and as a Floridian, I’m in awe of the beauty of the dogwoods and star magnolias with all their colorful blooms. Spring is the perfect example of the beauty of fresh starts and new beginnings. At the WSA, we’re fully embracing fresh starts and new growth - we’ve shifted around a few staff roles, we’re in the midst of hiring a few new team members (I’ll introduce everyone this summer!), and we’re digging deep to work on launching some impactful new initiatives for the organization! Change and growth is rarely easy… but it can be SO worth it!
Another great part of spring - it’s almost our favorite month of the year - Williams syndrome awareness month! I’ve already seen chatter on social media, so we’re definitely not the only ones that are excited! Be sure to check out the article on our Awareness Month Toolkit, and learn all the ways you can get involved in raising awareness and funds for the WSA. And be sure to save the date for Saturday, May 31 for our second annual Weekend for Williams! We’ll be broadcasting live for our 24 hour fundraising event!
April is also Autism Awareness Month. My son Matthew has autism, along with Williams syndrome. I know many other individuals with WS who also have autism. There are more people than we’re likely aware that have a WS & autism dual diagnosis. Like I’ve mentioned in previous newsletters, as a mom, I’m staying well connected to other organizations like The Arc to monitor any issues that may impact my child. Autism has been a hot topic recently, and some comments made about those with autism have been disconcerting.
Here’s what I know about Matthew.
He is not suffering.
No - he doesn’t pay taxes - but he volunteers every week at a thrift shop that benefits children who need foster care. People shop on Thursdays just so they can see him.
He hasn’t been on a date - but he loves others, without judgement or discrimination, in a way that changes lives.
He doesn’t write poetry as some people know it - but that guy makes up fun rhymes like no other! (He said bye to me one morning with “See ya later, excavator” - then cracked up!
He does his best with toileting on his own - but when you combine fine motor struggles + ulcerative colitis (a diagnosis he received at age 5), it’s not easy.
And as for baseball… Matthew loves to play catch, though batting isn’t his fave. I also have 2 bonus kiddos with autism. I just watched my daughter with autism and cerebral palsy learning to play baseball! They had a blast!
NONE of these things make people with autism, WS, or any other intellectual or developmental disability less worthy of love, deserving of support, or make them a less valuable member of our world.
Is autism (or WS for that matter) easy? Not a chance? But does it “destroy families?” Our kids with autism, who are all distinctly different, have made us better, stronger people. They’ve taught us to live unconditionally, that doing your best is always enough, and that giving up is never an option.
Autism is a spectrum disorder. And though we don’t always speak about it this way, Williams syndrome is also a spectrum disorder. When you’ve met one person with WS or autism, you’ve met ONE person with WS. Yes - there are situations where autism or WS can be difficult beyond words, break up families, and feel absolutely hopeless. This can also be said about neurotypical people and many other illnesses.
Here’s what I know…
Speaking in a way that generalizes or stereotypes people does incredible harm.
Words matter.
Kindness matters.
On that note, I’m excited for us to join together to bring awareness to Williams syndrome, with all of its beauty and struggle, highs and lows, and lots of love!
Take care of yourselves!
Sarah Schaefer
Executive Director, Williams Syndrome Association