May is Williams Syndrome Awareness Month – a time to shine a light on a rare genetic condition that affects 1 in 10,000 people worldwide. For me, it’s always a time of reflection – as a parent of a child with Williams Syndrome, each milestone, each challenge and each moment of joy is deeply felt.
Caleb is now 11 years old. Earlier this year, he went away on his first school camp. I’ll be honest – I was nervous. He has Avoidant/Restrictive Food Intake Disorder (ARFID), which means he’s very particular about what he eats and often experiences intense anxiety when faced with unfamiliar food. I carefully filled out the medical forms and explained his eating quirks, then crossed my fingers and hoped for the best.
It’s hard not to wrap your vulnerable child in cotton wool. The instinct to protect is strong – but I’ve been learning to gradually let go, in the hope that it will help develop Caleb’s skills in becoming more independent.
Still, I worried. The camp was filled with adventurous, physically demanding activities – high ropes, rock climbing, canoeing and more. For a child with difficulties with depth perception and spatial awareness, anything to do with heights can be quite scary! If you knew what Caleb was like as a toddler, you would have seen a little boy who couldn’t navigate his way up and down stairs. He struggled to use a low balance beam or go up and down curbs without lots of anxiety and meltdowns. Although it felt cruel to keep challenging him with tasks that appeared too daunting for him, overtime Caleb slowly gained more confidence.
Fast forward to the first day of camp. I received a phone call from his teacher, absolutely thrilled. Caleb had climbed a 10 metre ladder and launched himself off a giant swing! I was stunned – and so proud. His teacher told me how Caleb’s friends had cheered him on, giving him the courage to try something he’d never dared before. That support made all the difference.
The following week, Caleb was presented with an award for “showing incredible courage” at camp. As he accepted it, everyone started to applaud and cheer him on! Caleb beamed with pride. Later, I heard stories of how his classmates were all so proud of him and had cheered and spurred him on throughout the camp. I am truly and deeply humbled by the goodness of Caleb’s friends who encouraged him to the point of being able to conquer his fear of heights.
There’s something incredibly powerful about the friendships between neurodivergent and neurotypical children. Caleb loves the social side of school – he has friends among both boys and girls, and their empathy continues to amaze me. At last year’s cross country event, a group of girls who had already finished their race noticed Caleb struggling. Without hesitation, they took his hand and ran with him – even though they had just completed the exhausting course themselves.
“C’mon Caleb! Go, go, go! Good job, Caleb!” they cheered and encouraged him to catch up and beat the boys in front of him. When Caleb grumbled, “I don’t want to beat,” without missing a beat, his friend replied, “Oh! You just want to run your own race? Let’s go! You’re nearly finished Caleb! Let’s go!” The positivity was incredibly infectious and endearing. Caleb was able to complete his first ever cross country with the incredible support of his peers who kindly ran it alongside him.
As a mother, I could not have asked for a better community of cheerleaders for my son. I’m deeply grateful to the kind, compassionate people who have shown Caleb – and our whole family – such friendship and support. Their encouragement continues to shape his world in the most beautiful ways.
To learn more or support families like mine, visit Williams Syndrome Australia.
Click below to watch Caleb featured on The Project alongside his Williams Syndrome family.
Thank you for taking the time to read and share our story. Every conversation matters.
— Yumi
Contact Details for Williams Syndrome Australia
Website: www.williamssyndrome.org.au
Email: [email protected]
Williams Syndrome Australia is a non-profit organisation that strives to enrich the lives of individuals and families affected by Williams syndrome and similar conditions through support, research and education.
Their Mission Statement is:
- Providing information and emotional support to individuals with characteristics of Williams syndrome, their families, and the professionals who work with them
- Developing programs and services to help build strengths and meet challenges from early childhood through adulthood
- Increasing public awareness and understanding of Williams syndrome
- Encouraging and supporting research into a wide range of issues related to Williams syndrome
How to Donate to Williams Syndrome Australia
Click here for our PayPal link.
All donations to WSA are gratefully received.
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