Thirty two year old Aisling Starrs addressed a packed room in Stormont last week to share her experiences of living with the “hidden disability”, Dyspraxia.
The occasion marked the Newry woman’s first foray into public speaking and, in the grand surroundings of parliament buildings to an audience which included MLA’s, teachers and health experts, she bravely gave an insight into how the often overlooked condition affects her daily life.
Speaking to The Examiner days after her Stormont experience, Aisling is still on a high from her accomplishment and is amazed that she found the voice and the courage to overcome nerves and some of the pitfalls of her Dyspraxia, to address such a large group of people – something she thought she would never be able to do.
Once bluntly termed “clumsy child syndrome”, because of how it impairs physical co-ordination, Developmental Coordination Disorder/Dyspraxia is in fact a lifelong condition that also causes sensory processing issues. It is thought to affect as many as three children in every classroom and, although DCD does not affect how intelligent a child is, they can experience difficulties with memory, perception and processing.
While DCD is often regarded as an umbrella term to cover motor coordination difficulties, Dyspraxia refers to those who have additional problems planning, organising and carrying out movements in the right order in everyday situations. It can also affect articulation and speech as well as cause difficulties in social interaction, everyday life skills in education, work and employment, having serious negative impacts on daily life.
Growing up with DCD/Dyspraxia has certainly not been easy for Aisling. Her symptoms went largely unrecognised by teachers or medical professionals for most of her childhood until her diagnosis at aged 10. She didn’t receive any extra assistance throughout school except, she says, for the 15 minutes extra time she was allowed in her GCSE examinations.
Aisling struggled with tasks other youngsters managed easily; things like getting herself dressed, writing and learning to spell. Her difficulties undermined her self-esteem and affected her confidence greatly in school. The lack of understanding about her condition meant she was bullied in secondary school – something she kept a secret from her parents for many years.
“Things that came naturally to most children just didn’t come naturally to me and I had to try twice as hard as everyone else to do things that come easily to them,” says Aisling.
“It took me a long time to learn how to ride a bike, but I stuck with it and every time I fell off, I got straight back on until I eventually mastered it,” she adds, conveying the attributes of resilience and tenacity so common amongst children and adults with DCD/Dyspraxia.
“My co-ordination and balance issues meant I was never very good at PE in school. My balance is a big issue for me even now – I can’t walk down steps unless there is a handle to hold onto or the hand or arm of another person. I remember so many times growing up I would fall over or trip or bump into things so much more than other kids seemed to.”
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“Dyspraxia doesn’t just affect physical coordination though,” she explains,
“Organising my day is often an uphill battle. It’s not as simple as just bumping into things or losing my keys. Memory is a huge issue for me and I tend to take notes in my phone a lot to stay on top of things.
“Dyspraxia also affects me socially. Making and keeping friends in particular is hard for me as I can miss social cues. I still find this an issue and have very few friends as a result.”
Recalling her teenage years, Aisling reveals she faced more challenges than the average teenager, as she grew increasingly frustrated with her condition.
“I was frustrated and angry and didn’t know how to express how I was feeling. My parents were so worried about me but they didn’t know where to turn to back then,” explains Aisling.
“I’ve since learned that teenagers and adults with Dyspraxia are at a much higher risk of developing mental health problems due to the constant challenges they face in everyday tasks, their lack of self esteem and from generally feeling lonely or finding it hard to make friends.”
Despite an extensive employment history in retail and administration, Aisling admits that having Dyspraxia has made it hard for her to find permanent work.
“I can struggle with instructions and remembering things and my balance and coordination problems mean it may take a bit longer for me to carry out tasks at work so this has made it hard to hold down a job. Interviews are particularly difficult as it can take a while for me to process the question and gather the information I need to answer!”
Having stumbled across the Newry and Mourne DCD/Dyspraxia group on Facebook last year, Aisling describes the group as a “lifeline” for children and adults living with the condition. As a member of the emerging group’s committee, she has discovered a new found confidence which she says is helping her to share her story publicly. As part of the local support group, she is involved with helping to improve the lives of those affected by DCD/Dyspraxia by raising awareness of the disorder and lobbying for better recognition of it in education so that children affected can reach their true potential.
“Even now there is a lack of help and assistance for people with dyspraxia,” she says.
“Many children still go undiagnosed and assistance for adults like myself with dyspraxia is pretty non-existent. DCD/Dyspraxia should have the same profile and be as well recognised as any other learning difficulty but it’s not and there are many teachers and healthcare workers who still don’t know enough about it. Children can often fly under the radar when it comes to assessment and diagnosis because it is not an intellectual disability but it is much more than a problem with fine and gross motor skills.
“I and everyone else with DCD/Dyspraxia face all types of challenges on a daily basis and I would like there to be more recognition of how the condition affects people throughout their lives.
“When I was younger I used to get embarrassed about having Dyspraxia, but now, despite all the challenges I continue to face, I’ve come to realise that it has helped define the person I am today.”
If you or someone you know can identify with Aisling’s story, visit the Newry and Mourne DCD/Dyspraxia Facebook page for more information and advice or telephone Patrick Coulter on 07712870198.