Rusks & Rebels Guestlist: Raising a Child with Williams Syndrome

Rusks & Rebels Guestlist: Raising a Child with Williams Syndrome

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Dylan is the inspiration behind Rusks & Rebels
Gayle and Matt got in touch to tell me about their clothing brand Rusks & Rebels. There’s tons of stuff in the range that caught my eye – including some monochrome letter t-shirts – a perfect excuse for a bit of twinning.
What really touched me was the story behind the brand. Rusks & Rebels was inspired by their son Ryan who has William Syndrome. Though I have heard of William Syndrome I hadn’t really got a clue what it involved and how it would effect a families.
So I asked if they would be willing to share their first hand account of raising a child with Williams Syndrome:

Even though my son Dylan is 14 I have never been asked “What is it like raising a child with Williams Syndrome” Williams Syndrome is a rare chromosome disorder. The Syndrome effects all areas of Dylan’s development, he is a 14 year old boy living with the height, weight and educational and emotional development of a 6 year old. With one hand on a rather large piece of wood however, I am happy to say that all the medical conditions related to the Syndrome have so far past Dylan by, with only a few minor issues. So, his future health looks very positive, however his lack of development promises for an uncertain future in terms of employment. This is why Rusks & Rebels was born!
  • So, here it goes. This is what it is like raising a child with Williams Syndrome

  • Children with Williams Syndrome are very happy, kind and friendly people! This has given us so many lovely moments and laughs along the way.

  • Raising Dylan has been the biggest challenge I have ever faced but a challenge I have loved. We have a very handsome and loving young man to show for it.

  • Choosing the correct school for your child. This consumed me for 3 years as Dylan prepared to leave first school and head to middle school. Should I take him out of main stream and into a specialist school? The answer eventually was yes and after countless visits to different schools he made the move two years ago. His reading, writing and social life has taken a massive leap forward and I would suggest that anybody with a child that has special needs, both educational and physical should look at local special schools as they are an absolute godsend!

  • Raising Dylan and watching his progression through the education system as well as being a part of the Williams Syndrome Association and meeting young adults with Williams Syndrome made me realise that a life in full time employment was highly unlikely. This was the reason we turned a fun idea of making t-shirts for our kids into the baby & children’s clothing brand Rusks & Rebels! The though of working with us still has not outweighed the dream of appearing in the WWE as his alter ego “Rock Smasher” 🙂

  • PUBITY!! This is a rollercoaster ride for children without Williams Syndrome but is only heightened with stress and confusion for Dylan. Many questions have been raised during the last 12-18 months and sometimes out of the blue and in the most inappropriate of places haha. As Dylan’s Educational and emotional age is around 6 his understanding in changes to his body have been extremely confusing for him and even harder to understand when being taught about what is happening to his body. We have had to use some ‘interesting’ techniques and explanations to demonstrate. My personal favourite was the  “washing a car is just like washing in the shower” which seemed to have worked in keeping his hygiene levels acceptable. Does mean I have to wash the car more often to prove our point!

  • Turn it down a little. Children with Williams Syndrome have a heightened sense of hearing. Sharp, loud and high pitched sounds effect Dylan a lot more than anybody else we know. This is something that has been a real challenge to combat as Dylan does not like to wear ear protectors. He has become a master at reading situations around sound and always seems prepared to cover his ears to protect himself from a loud noise. Music also plays a huge part in Dylan’s life along with many young adults with Williams Syndrome. Music can effect his emotional state very easily and something as simple as a piece of music in a film can cause floods of tears.

  • Sharing is Caring! Not in the world of Dylan and any of his belongings! We have a daily battle to referee between Dylan and his sister Cameron with constant bickering and one-upmanship which is 90% of the time centred around the use of, hiding or even looking at each others ‘stuff’. Cameron has had the patience of a saint in the past but Dylan’s constant refusal to share anything has created a none sharing side of his sister we never thought we would see. Even though Williams Syndrome kids have a very caring and friendly persona we have found this trait of Dylan’s very hard to take on. So, as it stands, none of our children share anything 😦

  • Friends. Dylan does find it very difficult to create friendship groups at school and youth club. This is solely down to his Williams Syndrome and is probably the thing I have found the hardest to deal with. I used to watch him go into school disco’s and events and play on his own in the corner. This have never really bothered Dylan to much as he tends to enjoy his own space and playing in his own fantasy world. As parents I am sure you understand when I say it was utterly heart-breaking for me and on many an occasion brought me to tears. As Dylan has grown up into his grumpy teenage phase we have noticed more of a willingness to join in with social groups so fingers crossed there will be no more boogying to Gangnam Style on his own.

  • Over friendly is a word often used with Williams Syndrome children and young adults. The need to hug, play with hair, stand very close, hold hands and snuggle up to you are all things we have witnessed, not only from our own son but also other children we have met at Williams Syndrome meets. WS children have no fear when it comes to strangers and a huge lesson in their early years is stranger danger! We quickly incorporated what is appropriate and what is not appropriate with strangers and friends and family. This seems to have worked well for us but there is, and probably always will be a part of Dylan that is over friendly.

  • What is normal? Just recently I had a conversation with Dylan about how he looks. People with Williams Syndrome have very distinctive facial features including an upturned nose, sunken naisle bridge, puffiness around the eyes, long upper lip length and widely spaced teeth. Dylans appearance has never really been very prominent in his thoughts and we were taken back by him starting the conversation. “I think I look normal like everybody else until I look in the mirror. The boy I see doesn’t look like me. He looks weird”

  • As Dylan gets older he realises more and more the challenges he faces and how different his life is to a lot of the other children he goes to school with. The next chapter of our life living with Williams Syndrome awaits us as he develops into his teenage life and the last few years of school.

  • We may need a lot of luck going forward but we still beliEve that we are the luckiest people alive to have such a special boy.


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4 thoughts on “Rusks & Rebels Guestlist: Raising a Child with Williams Syndrome

  1. Thanks for sharing, admittedly I’ve never heard of Williams Syndrome, it must be challenging at times- but I’m sure there’s so much love that doesn’t make it a problem!

    Great post, I’ll be sure to also check out Rusks & Rebels 😊

    Like

  2. Before I even read the story, I looked at the picture and thought what a handsome boy – I genuinely assumed he was the child model for the brand!!

    Like

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