“Babies with Down’s Syndrome have low muscle tone (known as hypotonia) which is why it will take them a little longer to talk, walk and eat the same foods as others. They work extra hard, and they get there.”

 

It’s too easy for medical practitioners to attribute the delayed acquirement of various skills in those with Down’s syndrome to hypotonia. While they may mean well, we see it time and time again, where parents’ concerns are dismissed with this ‘catch all’ diagnosis – “it’s because he has hypotonia”. Do we ever stop to consider what hypotonia means? It is actually a very vague term, with no standard measurement and often becomes the default explanation for delayed motor development. There are many factors which affect ability to walk and if we do not adequately assess the reasons for slower motor development in individuals with Down’s Syndrome we cannot give individuals the targeted interventions they need. Walking should not be seen as an end in itself, rather ‘walking well’ should be the goal of any therapy because over compensating and adapting movement patterns can cause musculoskeletal problems further down the road.

The Foundation believes parents need to be better informed about how to enable their child to make progress so they can demand change. Beyond that the professionals need more research on the causes of mobility problems in Down’s syndrome and the most promising treatments.  Our community has a history of challenging the status quo and we must not stop now because people with Down’s syndrome deserve better. Routinely attributing slower motor development to hypotonia is not good enough. A greater understanding of how individuals with Down’s syndrome move, more research into contributing factors and specific person-centred therapies would mean all people with Down’s syndrome are given every opportunity to develop safe and efficient movement throughout their life times.

 

Maxine & Rukai’s story

From Panacea to Progress: why we need research now

 

There’s an old joke whereby a musician walking down the street is asked by someone in need of directions: “how do you get to Carnegie Hall?” The musician replies: “practice, practice, practice!”

I don’t know anyone who’s ever learned anything, be it hang gliding, learning Italian, or playing the guitar, who has not had to rehearse over and over before excelling. Even tennis champion Andy Murray admits he is not a natural at the game and it’s only years of the strictest of repetition and studying past performance which have advanced his career so measurably.

And so, to my point: the joke about our well-rehearsed musician is indeed amusing. But the throwaway question we’ve heard all too often about my 8-year-old, pre-verbal son (“what if he doesn’t speak?”) is not. There is simply no “what if” if you haven’t exhausted all your options. And until you conduct extensive research into a problem area—in this case, mitigating the impact of hypotonia on oral-motor development—your options will never be exhausted. All your actions are half-hearted.

What holds my son back? Apathy. Stereotype.

Lack of research that creates deliverable, quality interventions.

Practice in anything creates new synaptic connections in the brain which enable actions to become reflex. It is well known that creating these synaptic connections takes far longer for people with Down’s syndrome, but, in the same way Andy Murray found a way to soar from having that ability to practice, from having the support systems and people who believed in him, there needs to be much more information gleaned from research to support people with Down’s syndrome in reaching their heights. There needs to be much more information created to support professionals in supporting an entire cohort of students not merely educable, but hungry for knowledge. My son is a sponge. Turn on the tap before it’s too late.

How do the Sarah Gordys and Pablo Pinedas, and Karen Gaffneys and Oliver Hellowells become so excellent at what they do? They practice.

If children with Down’s syndrome are meant to develop into adults who contribute to society and support a country’s economic success, then society needs to support them by providing the right interventions at the right time—underpinned by current, in-depth research.

“Any other approach is little more than a panacea, and ignores the true capability of human beings.”

Any other approach is little more than a panacea, and ignores the true capability of human beings.

Speech production is markedly different, but absolutely possible, for children with Down’s syndrome, and so little is known about how to support kids like my son.

We need more research now.


Please consider supporting our work through a one-off or regular donation or by fundraising for us.  We cannot wait, our community needs us.

Professionals who would like to learn about what we currently understand about hypotonia in those with Down’s Syndrome DS Education have an excellent article here.

Our deep thanks to Maxine and Rukai Sinda Napal for sharing their story. You can follow them here.

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