Born with a rare genetic condition called Coffin-Siris syndrome, seven-year-old Cooper is affected physically and mentally. He’s spent years cooped up inside because the world is an overwhelming place but, with some help from Satan’s Little Helper, those days are behind him!
“He needs to use a wheelchair because of his low muscle tone and requires 24/7 supervision,” explains Cooper’s mum Alanna. “He’s non-verbal and hypersensitive to touch, sound, water and sometimes light, and he finds it challenging to engage with people he’s not familiar with.”
His family also find it difficult to get out and about with Cooper because he finds the change of scenery, and the unexpected things that can happen outdoors, distressing.
Making his way in the world
Despite his difficulties, Alanna says that once he gets to know someone, he can create strong bonds and connections! He attends a mainstream school for a few hours a day and has made excellent progress in getting to know his teacher aids and some of the other students.
“I wasn’t quite sure if going mainstream would be beneficial for Cooper but he likes to surprise us!” says Alanna. “He has made such a lovely connection with his teacher aids and some of the older students.”
Although there have been difficult moments for Alanna and the family, she says that Cooper’s “cheeky smile” can brighten their day, while living with someone who has different requirements has turned them into better people.
“He’s shown our family and friends that we need to be more empathetic to others and to show more kindness where kindness is needed and to not take things for granted.”
A little bit of support
Cooper has a strong support network around him, which helps him to be his best self at home and in school. But even the strongest network can be strengthened, which is where Satan’s Little Helper came into play.
To allow him and his family to get out of the house more, Cooper was gifted a new tablet, which he can also use as a communication device, a case to protect it, and some noise-cancelling headphones.
Alanna says it has worked like a dream, giving Cooper the freedom to enjoy trips with the people he loves the most!
Much-need protection
“Cooper is loving being able to go out into town with us on shopping trips, hikes and spontaneous excursions, which now occur more often since he has his own little protection from the noisy world around him,” she explains.
“It’s such a joy for us to go out and enjoy the day as a family and not have to stress about Cooper’s anxiety levels or having people look down at us when Cooper is screaming due to his hypersensitivity. He’s remarkably calm and relaxed now with every hospital appointment; it has made all of our lives so much better.
A vital communication aid
The tablet has also helped Cooper’s communication, enabling him to tell Alanna what he’s thinking or feeling without her having to go through a frustrating round of guesswork.
“It’s been a joy teaching Cooper how to use the speaking apps on his tablet! We’re excited at how he’s progressing with letting us know more about what he wants or how he’s feeling instead of having to guess.
“Parents of children with extra needs tend to focus on trying to maintain their wellbeing to the detriment of our own. To most people, a tablet, headphones and case doesn’t seem like much, but to Cooper it’s a sensory saver and calming tool. For us, it’s had an impactful improvement on our mental health and wellbeing.”
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