Dyspraxia / DCD | Emma Long Dyspraxia Foundation

Issue 12: Dyspraxia/DCD | Emma Long

Emma Long, a volunteer coordinator working for the Dyspraxia Foundation, shares her experience of struggling to get help for her daughter and how she now volunteers at the Dyspraxia Foundation, which helps families in the region.

Emma Long
Emma Long
This story was published in Dystinct Magazine Issue 12 November 2022.
Emma Long is a volunteer coordinator from Cambridgeshire, UK, working for the Dyspraxia Foundation.
This is Emma's story of initially struggling to find help for her daughter, Tiana and then going on to work for the Dyspraxia Foundation to support others who live/work with or care for individuals with DCD/Dyspraxia.

Dyspraxia/ Developmental Coordination Disorder (DCD) is a hidden condition that is still poorly understood. Yet, it is surprisingly common in children and adults. Dyspraxia/DCD affects around 5% of school-aged children. Around 2% of children are more severely affected. These difficulties continue into adolescence and adulthood in most cases. Males are more likely to be affected by Dyspraxia/DCD than females. However, females are often older when their difficulties are identified. Although Dyspraxia/DCD is unique and a separate condition by itself, people will often (but not always) have other co-occurring diagnoses too.

Identifying Dyspraxia/DCD early in the education system leads to identifying a person's physical, learning, social, and emotional needs so educational support can be provided to help the individual reach their full potential.

The Dyspraxia Foundation is a not-for-profit organisation that provides information and support for people with Dyspraxia/ Developmental Coordination Disorder (DCD) and those who live or work with them through a telephone helpline, email enquiry service, website, social media, leaflets, and information sheets. The Dyspraxia Foundation also supports a national network of local groups run by volunteers (including groups for adults with Dyspraxia/ DCD). They also run a closed Facebook group for young people with Dyspraxia/DCD aged 13-25 years.

As the mum of a teenage daughter with DCD/Dyspraxia, Emma has personal experience of struggling to get help for her child, who presented with a bewildering range of challenges a few years ago. "Tiana had problems from an early age. She failed her newborn screening test, a sign of Auditory Processing problems, and she was late in walking. She wouldn't engage with other children and was always falling over and hurting herself," shares Emma.

Tiana had delayed speech development and babbled a lot as a young child, which only her mum, Emma, could understand. So, she required Speech & Language therapy at an early age. "Tiana's problems increased as she got older. Her struggles became more apparent when she started secondary school. She would forget about her day and would often be unable to tell me about her day. She would also forget important equipment, her inhaler, and her homework," shares Emma.

However, when Tiana was at school, the staff could not notice the struggles that Emma saw in her daughter. It became apparent to Emma that Tiana was very good at masking in school. Yet at home, Tiana would lash out in frustration, smashing household equipment and leaving Emma bruised and exhausted.

She wouldn't engage with other children and was always falling over and hurting herself.

Unable to access any form of support from either the Education Department or Community Health Services in Cambridgeshire, Emma had no choice but to have a private and quite expensive ASD/ADHD assessment. The assessment revealed that 12-year-old Tiana was indeed struggling with DCD/Dyspraxia and autistic traits in sensory processing. The assessment also showed that Tiana had problems with her executive functions, especially with short-term memory, meaning that it was functioning at just 5% capacity. Tiana was later diagnosed with severe dyslexia and joint hypermobility.

Tiana said she wanted to be happy, pain-free, and have friends.

Following the diagnosis, Emma went through the process of an ECHP (Education, Care and Health Plan) and onto a 1st Tier SEN Tribunal in 2021 to successfully win Tiana a place in a Specialist Independent Secondary School. Tiana, now aged fifteen, is much happier. "I'm super proud of her. She's struggled all her life. 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 wanted to be happy, pain-free, and have friends," shares Emma.

Emma believes the main problem is that DCD/Dyspraxia is a hidden disability. In the UK and in particular Cambridgeshire, there is no diagnostic pathway for the condition. Also, there is not enough awareness and understanding of the symptoms amongst health professionals, educational settings, and the public. This means that for struggling parents/carers, getting a diagnosis can be a hit-and-miss depending on where families live and how knowledgeable local support services are. This is why Emma volunteers with the Dyspraxia Foundation - Cambridgeshire Support Group, so she can help local families navigate the struggles that accompany DCD/Dyspraxia better.

Emma Long

Volunteer at Dyspraxia Foundation
dyspraxiafoundation.org.uk | Facebook

Info Sheets


Toolkit for parents/carers of school-aged children with dyspraxia/DCD

This toolkit was developed by the Dyspraxia Foundation for parents/carers of young people with dyspraxia (also known as developmental coordination disorder – DCD), a condition that affects gross and fine motor coordination in children and adults and that can also affect speech, organisational and planning skills, memory and perception. The toolkit offers a wealth of information and practical suggestions to help parents address the daily challenges experienced by children with dyspraxia/DCD at home, at school and in their leisure activities. The techniques and tools included in this toolkit will help parents/carers build their child’s independence and resilience, ensuring they can reach their potential in all areas of life. Chapters include information about dyspraxia/DCD; accessing professional help; how parents/carers can help at home; working in partnership with schools; supporting your child’s wellbeing; and supporting your child’s participation in social and leisure activities. This toolkit is essential reading for parents/carers of children who have dyspraxia/DCD, for parents/carers of children who are waiting for an assessment, and for parents/carers who are concerned about their child’s motor/organisational development and who want to do something ‘while they wait’ for professional assessment or support.

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Extracts from Dystinct Magazine

Dystinct Journey

Emma Long

Volunteer coordinator working for the Dyspraxia Foundation