What is Down’s Syndrome?
Down’s syndrome, also called Trisomy 21, is a lifelong developmental condition, caused by a genetic mutation. Superheroes with DS tend to be active, cheeky and adventurous! The characteristics of DS include low muscle tone, hyper-mobility (extra bendy joints), weakness, different facial features and learning disabilities. The DS spectrum is huge, and no two people are affected the same.
There has been a huge increase in representation of DS in modern mainstream media, which is fantastic, and a huge step towards societal inclusion for people with differences. However, we find that this typically represents DS superheroes on the mild end of the spectrum. The DS spectrum is extremely varied, and we are therefore strong advocates for increasing awareness of all types of DS, especially rare characteristics which society does not always accept.
Did you know, children with DS have increased likelihood of sight and hearing problems? Some of our superhero DS clients are non-verbal and use different ways of communicating with us, for example PECs (picture exchange communication system) and eye pointing. We also work closely with sensory integration occupational therapists to reduce sensory seeking behaviour such as rocking and throwing, which can cause balance and stability issues.
Our Down’s syndrome superhero
Molly is four and has DS, she can’t go on a trampoline but LOVES gentle bouncing on her pink gym ball! She is very cheeky and will hide the toys in the therapy room when you’re not looking! Molly is a superhero warrior who went through two heart surgeries as a baby! She is also deaf, visually impaired and has epilepsy. She does not like the feeling of hearing aids though. This means she uses a special headband with built in ear plugs, in her favourite colour, bright pink. To protect her head if she has a seizure, Molly wears a funky stripy helmet, and always co-ordinates this with her outfi. Molly is getting used to her new glasses as she has sensory aversions – she wears soft silicone glasses that wrap around her head and don’t irritate her ears, how cool is that? Molly uses a Kaye walker to move around, she loves playing at the water tray with her best friend Aiza. They are both learning to use Makaton, and can sing Twinkle Twinkle in Makaton! For exploring the countryside and going on adventures, Molly uses a big kids’ buggy. When Molly needs to communicate her needs, she uses facial expressions, laughing and crying, as well as other vocal sounds. Those who know Molly well, are able to know what she wants immediately, (usually a cuddle!).
How can physiotherapy help?
Our DS superheroes at BBP are treated for their physical issues which result from Down’s syndrome, including hypotonia, increased flexibility, delayed gross motor skills, reduced balance and weakness.
Gross motor skills
Molly’s gross motor skills are delayed for her age, but that doesn’t stop her finding a different way to explore and have fun! We understand the importance of independence, so BBP does not stop Molly from doing things her own way. But as well as this, during her physio sessions, Molly practises new ways of transitioning! This increases her body awareness and motor planning, and eventually Molly will learn to move in a more efficient way, saving more energy for playing! Molly used to stand up through a ‘bear crawl’ from the floor. Molly was able to practise this skill in her own time at home, so she remained motivated to move. But in physio sessions, our team used expert handling and distraction to encourage Molly to stand through half kneeling. Six weeks later, Molly mastered this skill herself! Now she can stand up quicker and with less energy. What a star!
Molly has some core weakness in her trunk muscles, due to her hypotonia, or low muscle tone. The BBP team work with Molly in fun and engaging ways to strengthen her core, enabling Molly to walk over the wobbly floor in her favourite soft play centre! Molly also worked with team BBP to strengthen up her quadriceps, or thighs. When these were weak, Molly locked her legs back rigidly when she stood, meaning she was not able to bend down if she dropped a toy! After some subtle strengthening work, Molly can squat all the way to the floor!
Molly’s hips were at risk of subluxation and dysplasia, where the hip does not develop into a normal ball and socket joint, and so is prone to coming out. This is because Molly was delayed in her crawling, standing and walking. Working on these skills in a supported way, and educating Molly’s parents on an active standing programme, enabled Molly’s hips to develop in the correct way. This is confirmed by regular hip x-rays recommended by BBP.
Function and participation
Team BBP got to know Molly well by working with her, her speech and language therapist, and speaking with her parents and big sister. Now they know all of Molly’s likes and dislikes, they are able to tailor her physio goals to her hopes and desires. For Molly, this means increasing her walking endurance to keep up with her best (and super-fast) friend in school, and maintaining her newfound core strength, to continue with her favourite wobbly activities in soft play!
To enquire about DS intervention for your superhero, contact us here.