“I am wondering if she has dyspraxia?” Those were the brave words of my daughter’s Reception teacher. She was a newly qualified teacher and sometime later I asked her how she knew about dyspraxia. She told me her nephew has dyspraxia and she saw similarities between him and Lydie. Interestingly, she had not received training on dyspraxia during her teacher training or subsequently.
Lydie is now twenty-two years old and as I reflect back on her painful journey through education, I realise how fortunate we were to have a teacher who recognised the signs of dyspraxia and will be forever grateful she voiced her concerns. Sadly, most of Lydie’s teachers did not have the same awareness. By the end of Reception year Lydie was diagnosed with developmental coordination disorder (DCD), the preferred medical term for dyspraxia.
Early on, I realised the main challenge facing Lydie was not DCD per se, more trying to live and learn in a world that did not understand her DCD. This was perfectly summed up by Lydie: “I’m trying to live in my round peg way, in a square hole environment”. I often found myself wishing she had a condition which was obvious to the naked eye. How much simpler life would be and allowances would automatically be made.
How common is dyspraxia/DCD?
When I trained as both a registered general nurse and an orthopaedic nurse, dyspraxia was termed “clumsy child syndrome”. At that time the sheer prevalence of this hidden condition was not recognised and it is only recently this has been acknowledged. The Royal College of Occupational Therapists’ Fact Sheet on DCD (available from rcot.co.uk) has this to say about the prevalence of the condition:
“UK based population studies have shown a prevalence of 1.8% with a further 3.2% of children considered as having a “probable Developmental Coordination Disorder” diagnosis, suggesting a likely incidence of 4.9% (Lingam et al 2009). Given an estimated United Kingdom population of children aged under 16 years of approximately 12 million, it can be inferred that that there are approximately 588,000 children with DCD in the United Kingdom.”
These figures equate to between one and two children in every class.
Furthermore, there remains little understanding of the impact on the child and their family which is massively exacerbated by the lack of awareness amongst the professionals these families turn to for support. Research by Wilson et al.1 reveals how poor the understanding of this complex condition is amongst these key professionals.
Although DCD is often referred to as a specific learning difficulty (SpLD), it affects every area of Lydie’s life, not just her learning. It is a medical condition recognised by:
- The World Health Organisation (ICD 10, International Classification of Diseases)
- DSM V (American Psychiatric Association, 2013, Diagnostic and statistical manual of mental disorders, 5th ed.)
- The European Academy of Childhood Disability (EACD).
Lydie was later diagnosed with dyslexia and non-verbal learning difficulties within the autistic spectrum. In recent years, the high level of co-occurrence of DCD with other conditions has been recognised2. The term “neurodiverse” has emerged, which I feel is apt. It acknowledges the underlying neurological difficulty, encompasses the co-occurrence of conditions but simultaneously recognises their ability to be lateral and diverse thinkers.
Lack of support for teachers
As a parent I felt frustrated, angry and helpless as I watched Lydie find school progressively more of a struggle. Life felt like a constant cycle of spending school holidays desperately trying to lift her self-esteem in time to return to school only to have it knocked down again. Now as a young adult, Lydie is working hard to overcome crippling anxiety largely attributed to her experiences in school.
Having lived through these experiences, both Lydie and I fully appreciate that the real problem was not lack of care or dedication on behalf of the teachers but lack of training and support for them in DCD. After qualifying as a nurse, I was expected to perform “extended roles” (such as suturing or intravenous lines) and I was always given thorough training, supervision and support to carry out these functions safely. In comparison, on qualifying, teachers are under legal obligation to meet the needs of every child in their class yet this is not matched by providing them with the specialist training to do so for children with DCD. I still find it shocking, all these years on, that the majority of teachers have not received additional training on a condition found in almost every classroom.
Understanding is key
In 2009, I surveyed twenty-five children aged between nine and 16 years, all with a DCD diagnosis. I asked them what helped them the most at school. I was expecting answers like, “laptops” or “TA help”. In fact, twenty-four of my sample said: “Having a teacher who understands my dyspraxia”. This highlights the need for training and allays the misconception that supporting these children is expensive when, in fact, the opposite is more accurate. Lydie will tell you many things which make it easier for her and most of them are free. Here are a few key examples:
- sitting at the front, face-on to the interactive board
- giving homework out at the beginning of the lesson, not the end
- having a locker/peg/drawer at the end of the row where there’s more room
- teachers talking something through before demonstrating it, not demonstrating and talking at the same time
- keeping the space around the interactive board plain and uncluttered
- allowing pupils time to process any questions before responding.
Individually, such adjustments may seem to be small but collectively, over the course of a school day, they can make a real difference; by the end of the school year they can add up to a significant reduction in stress and anxiety for pupils.
Once teachers are trained in DCD they understand the reason behind these strategies and realise how easy it is to implement them. They then notice the knock-on effects in terms of benefits to others in their class.
During Year 3, Lydie had a wonderful teacher who clearly understood DCD. Lydie simply flew under her care and life at home became happy and relaxed. I vividly remember this teacher noticing how at the end of each day I had to return to the classroom and round-up Lydie’s belongings – her book bag, sandwich box, water bottle and cardigan. The following day Lydie told me everyone in her class had been given a checklist which they had to use to pack their bag at the end of the day. I smiled to myself, grateful that instead of reprimanding Lydie for losing these items, this teacher fully understood this to be a feature of her DCD and set about helping in such a simple but inclusive way that not even Lydie realised it had been done for her. At parents’ evening I expressed my thanks and she replied by showing me her lost property box. “It’s virtually empty”, she said. “It helped lots of other children too and I’m always going to do it from now on!”
Feel the benefits
Having now spent considerable time meeting many children, young people and adults with DCD, I have come to recognise that not only are their challenges overlooked but so are their many gifts. Many people with DCD have extreme areas of talent. They are often fabulous innovators because they have grown up laterally thinking their way around problems. They are good at seeing the bigger picture and often have skills in IT. Their tenacity is second to none; I often called Lydie my “puppy with a bone” because she never gives up when trying to master something. If the world measured effort and not academic success, she would be an Oxbridge candidate! Her quirky sense of humour is wonderful when it can peep from under her blanket of anxiety. I dearly wish education would move away from making children handwrite or type to prove what they know. Shouldn’t we be accommodating their round peg way of demonstrating knowledge?
So have things moved on in recent years? Yes, awareness is definitely increasing, but I feel we still have a long way to go in ensuring this huge group of children is recognised and supported properly in both education and health. Many are missed and reach university before being identified. I think early years settings and primary schools are becoming increasingly aware and are actively seeking training. Students relate to having to “survive” secondary school to reach university where they feel better supported. Many feel they would have achieved far better results if the understanding and support they receive at university had been available at secondary school.
In reflecting on why children with DCD are often missed or over-looked – on why is it often deemed “the Cinderella of SEN” – I have concluded it is due to a few things. By it’s very nature, DCD is hidden. When you add to this the fact that many of these children are bright, lateral thinkers and masters of cover up, you can see why teachers need specific training in DCD in order to identify these children. Many pupils with DCD are quiet and well behaved, silently coping, using their own strategies in the best way they can. It’s often only when faced with a complex task which requires employing several coping strategies together that their own strategies become ineffective. Handwriting is a prime example. It’s a complex skill where the child is required to pull together many skills and for the child with DCD, these are the very skills most compromised by their DCD. Unsurprisingly, poor handwriting is regarded as a “red flag” for DCD.
I passionately believe that diagnosis for DCD is important and should always be made by a medical doctor, supported by an occupational therapists report. However, what mattered the most to Lydie was having a teacher who understood her dyspraxia. Given that children affected by DCD are to be found in almost every class, providing adequate training and in-class support for our teachers on DCD is essential.
Dyspraxia Awareness Week 2019
6 to 12 October 2019
The Dyspraxia Foundation’s annual event will this year focus on further and higher education and dyspraxia in adulthood.
The week will seek to inform the public about dyspraxia/DCD and how it affects people of all ages, with a particular focus on those in post-school education. The Foundation will be sharing stories of individuals and families living with dyspraxia – the challenges they face, the support that helps them and how they manage living with the condition.
Source: SEN Magazine