Dyspraxia – also known as Developmental Coordination Disorder (DCD) – is a condition that affects a person’s movement and coordination. It also affects someone’s ability to organise and plan their daily tasks and for some people, their speech, as well.
However, anyone with Dyspraxia/DCD will have their own, individual profile of difficulties. Some symptoms also overlap with other neurological conditions – poor Executive Function is also a feature of ADHD/ASD for example – which means it can be difficult for people to get the correct diagnosis.
Range of Symptoms can be Confusing
Emma Long is a Volunteer Coordinator for the Cambridgeshire region of the Dyspraxia Foundation, a charity that provides advice and support to parents and professionals across the UK. As the mum of a teenage daughter with the condition, she has personal experience of struggling to help her child with what initially seemed to be a bewildering range of challenges.
“Tiana had problems from an early age. She failed her newborn hearing test, a sign of auditory processing problems, and she was late walking,” she explains. “She wouldn’t engage with other children and was always falling over and hurting herself – the childminder used to say to me, ‘Mr Bump was out again today!’ Her speech was also delayed. She used to babble – I was the only one who could understand her.”
Tiana’s problems increased as she got older. She developed a stutter and struggled to match the words in her mind with what she wanted to say out loud. Hypermobility in her joints means that she regularly suffers from fatigue and headaches. At one point, she struggled with the basics of daily living skills like getting in and out of the bath to wash because of the pain in her joints. And although she behaved perfectly at school, at home she would rage and lash out in frustration, smashing household equipment and often leaving her mum bruised and exhausted.
Impossible to Find the Right Help and Support
Schools and health professionals offered the family little advice and support, and Emma, a single parent, admits that, at times, she felt desperate. She didn’t know how to best support her daughter and felt judged by everyone – including the school, who accused her of lying about the meltdowns.
Eventually, she sought a private (and very expensive) ASD/ADHD assessment which finally revealed that Tiana has Dyspraxia/DCD and autistic traits in sensory processing. The process also showed that she has problems with her short-term memory, meaning it was functioning at about five percent of its capacity. She was also found to be severely Dyslexic – which had been missed by everyone.
Not Enough Awareness or Understanding of Dyspraxia
“It made me cry to hear that,” Emma recalls. “I was mortified that she’d been struggling for so long. I remembered a time when she was a toddler, waddling around in her nappy, holding her favourite dolly. She kept saying, ‘Where’s my baba?’, meaning her doll, and I kept telling her, ‘It’s in your hand!’ It was heartbreaking to think she couldn’t remember where it was. I felt we’d all let her down – me, the Education Systems, and the Health Professionals.”
The main problem, Emma believes, is that Dyspraxia is a Hidden Disability. There is no Diagnostic Pathway for the condition and not enough awareness and understanding of the symptoms among health professionals, school staff and the public at large. This means that getting a diagnosis can be hit-and-miss, depending on where families live and how knowledgeable local support services are.
A Brighter Future is Possible
Now aged fifteen, Tiana is much happier and now attends a special school. “I’m super proud of her, she’s struggled all her life,” her mum comments. “It was important to me that when doing her ECHP she was able to voice what she wanted to get out of her ECHP –Tiana said she wants to be happy, pain-free and to have friends.”
In addition to advising other parents through the Dyspraxia Foundation, Emma also runs a Facebook group CambsDyspraxia, where she is in contact with families all over the UK. She’s been astonished to discover that some of her posts have been viewed by more than twenty-five thousand people.
“Having a child with Dyspraxia can be extremely stressful for parents, especially when trying to find support for them or their child. I tell people to take time out for themselves. Remember that you need to reenergise your own needs, self-care is just as important. Reach out for support wherever you can, the Dyspraxia Foundation/Groups, friends, and family if you are struggling”
