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Should you ask a health care professional, or Google, what Williams Syndrome (WS) is, they will tell you that it is a genetic disorder that occurs in the 7th chromosome and can affect anyone, males and females alike from all cultures.
Depending on the document you open when you Google WS they will also tell you that it occurs in 1:7 500 or 1:20 000 or 1:30 000 births. Regardless of the accuracy of these stats, the little saying, “You get what you get, and you don’t get upset,” comes to mind as WS, like most other syndromes is not curable.
People with WS have very distinctive facial features. Medical problems, in various forms of severity, include weight and growth problems, feeding difficulties, hyperacusis (sensitivity to sounds [ you try and put a child down to sleep when the clink of a knife against a plate can and will wake them]), dental problems, colic (5 very long months for us), kidney problems, low muscle tone, mild to life-threatening heart disease, developmental delays, and learning challenges. We’ve experienced most of these.
They also have difficulty with spatial relations, numbers, abstract reasoning, and executive functions (I did not think that we would ever conquer potty training). ADHD is prolific in people with WS. Whilst they don’t have the ability to process social cues, they have outgoing, engaging and infectious personalities, taking an extreme interest in other people with an enormous capacity of empathy.
Williams Syndrome (WS) is more than a medical diagnosis—it’s a unique and often challenging journey filled with love, learning, and growth. In this follow-up blog, we delve deeper into life with WS through the story of Ilz-Marie Clemitson and her daughter, Amé. Ilz-Marie shares her personal experiences, shedding light on the beautiful complexities of raising a child with WS and how Sunfield Home has provided Amé with a loving, independent community where she thrives.
Most have an aversion to physical contact, yet love music!
I can keep you entertained with medical facts and whilst they are important, I truly believe that the person is more important than the diagnosis. So read on as I introduce you to our daughter, Amé, a beautiful child who happens to have Williams Syndrome.
I was a typical first-time mom, exhausted but always paying attention, knowing where my child was and what she was doing, yet I need to admit failure! I’ve lost count of how many times, while shopping, I would stop my trolley, turn to collect something from the shelf and turn back to find my child not in the trolley where she was 3 seconds ago but rather in the arms of a complete stranger who simply could not ignore the outstretched arms and wide smile of a cheeky WS imp. Amé is now 25 years old and has still not met a stranger!
She has been a resident at Sunfield Home for the past 4 years, and since then I often enter a shop, receive a greeting from staff, and then notice the non-too-subtle look behind me which is always followed by the question, ‘Where is your daughter?’ She makes an impression wherever she goes!
Since Amé lacks the skill to ‘read the room’, everyone, in her eyes, is having a good day (or should be) and would just love to share a smile with her. And even if it did not start out that way, it certainly ends in her leaving laughter and sunshine behind! Many impromptu conversations forced me to apologise for her line of questioning as she could not distinguish between appropriate and inappropriate questions. For the most part, people are gracious and have even failed to prevent a slight giggle from escaping, realising the innocence behind the questions.
They certainly miss her friendliness in the shops but what an amazing blessing that she gets to share her love for life with the residents and staff at Sunfield Home. Still able to express her love for music and people but is enriched with independence, activities and a very definite sense of being a grown-up.
Amé’s love for music has created an incredible bond between her and her dad. And she has no problem informing him of her opinion on certain genres. Home visits find her in the front garden, surrounded by our pets, headphones firmly fixed, volume maxed out, and serenading the immediate neighbours, albeit a bit off-key.
I am not able to compare living with a child with WS to living with a child with a different syndrome, diagnosis or disability but it has certainly taught me patience, a huge capacity for ‘different’ and absolute dependence on God. People with WS develop peculiar fascinations. Some of the ones that we’ve experienced include fans, washing machines, high-pressure washers, irrigation equipment, snakes and spiders. Whilst many of them last, some, fortunately, disappear.
Amé has experienced lifelong difficulty with reading and writing. Amazingly enough, technology has been our friend. She manages to Google, message family and friends, play games, and download music. She also manages to completely befuddle the software on her computer as she has no fear of pressing buttons!
Is it worth it? Absolutely!!
Most people can raise ‘normal’ kids but to the ones of us who were given a different version of ‘normal’ with no person-specific manual (and no request for such a little human) will know that life is hard, often scary, real, dramatic and exhausting. But regardless of what our children lack in the eyes of society, we know better. They make us work harder, extend our abilities to parent further than we thought possible, and provide such a sense of accomplishment that ‘parents-to-normal-kids’ will never have the joy of experiencing.
Ilz-Marie Clemitson (mother of Ame Stiglingh)
Have any questions? Call or email our General Manager, Don Tully.