Dyspraxia Awareness Week 2018: Case Study – Maria

Maria talks about her experience of supporting her 15 year old daughter

My 15-year-old daughter was diagnosed with Developmental Coodination Disorder (Dyspraxia) when she was 13 so quite late in childhood and at a crucial time in her development – the start of the teen years.

I had felt that she was struggling with coordination and some motor movement quite early on but although she had difficulty with things like shape sorters and puzzles as a baby and toddler, she met all of her development milestones early or on time so I was made to feel a bit neurotic when I pointed out that she couldn’t manipulate some of the toys the other children could. She never showed any interest in getting herself dressed so we didn’t have the famous terrible two’s tantrums my friends were having with their toddlers over wanting to buckle their own shoes and put their own coats on.

At school, she performed well both socially and academically and although teachers would moan about her handwriting and chastise her for spilling things, they always wrote off her difficulties as being because she was ‘dreamy’ or due to her being left-handed. As she got older and was expected to take on more responsibility, things became more challenging –  I would collect her from school and she would come out with everything in her arms because she hadn’t been able to pack up in time. Friends would laugh about her lack of organisation and say it was her way of rebelling because I am so tidy and organised, but I think deep down I knew she was struggling – here was a girl who had got top marks in her SATS exams but could not tie her own hair up, ride a bicycle or fold a piece of paper and put it in an envelope. When she left primary school all the teachers signed the children’s PE kits – the headteacher signed my daughter’s with ‘try not to fall over too much at high school’ – she always laughed at her clumsiness and it had become a bit of a running joke.

It was only when she got to high school that it really became apparent how much she was struggling. She is in a high performing all-girls school and the transition was very difficult. Much of the homework in Y7 had a creative element – make a poster, design a bag for German words. My daughter was spending hours every night trying to complete these tasks. In the end I used to step in and do the cutting and sticking while she did the writing.

At parents evening I started hearing the same old things ‘she’s clumsy’, ‘she’s disorganised’. By this time, anxiety had began to creep into the mix and the more disorganised she became, the more anxious she got. In the end, I decided to see the GP – on the way there we talked about how she would try and describe her difficulties when we got there. She told ‘me hands just don’t do what my brain tells them to’.

It took about a year to get the formal diagnosis and to be honest, I didn’t feel the occupational therapist had much idea about Dyspraxia – most of the tips she gave us, she was just reading off a sheet. The Senco at school didn’t seem to have much understanding either and my daughter’s initial individual education plan seemed to be more appropriate to someone with Dyslexia, which she doesn’t have, than Dyspraxia.

It was also difficult for my daughter to come to terms with the diagnosis at a time when the main things on her mind were all about trying to fit in and be like everyone else. Initially, she refused to accept help at school and did not want anyone to know that she was in any way different.

She is now in her GCSE year and does use a laptop and the extra time she needs in exams. She has accepted that all this does is level the playing field. I have always felt that the way Dyspraxia affects her is very well hidden. She does not experience many of the typical difficulties associated with the condition. She is good at sports and has the stamina to climb mountains and hike for hours on end, she plays violin and guitar and her handwriting now is very legible even if it does take her a long time.

In many ways, this makes her lucky but it is also difficult for people to comprehend that she genuinely finds some things challenging. She still struggles with fasteners on bags and clothes, is slow to get herself together, cut in a straight line and use a glue stick. She has never been able to master sewing or using a compass. She still trips over her feet when walking up steps, she still can’t ride a bike and she is disorganised to the point where I have to fasten her keys in her jacket, make sure she has what she needs before she leaves the house and tidy her room almost every day. Sometimes, when I am watching her struggle with the simplest things like unravelling her head phones I wonder if things would have been easier had she been diagnosed at primary school.

The school has been working hard to accommodate her but I still feel there is a real lack of awareness of what Dyspraxia is and how it affects teenagers. People just don’t seem to get why she can’t always get to grips with simple things. Despite her diagnosis, one teacher wrote on her school report at the end of year ten that she is disorganised. And only this week, the school has introduced a policy that children who use a laptop have to use a school one – a big, bulky machine that needs to be signed in and out of the IT office each day and ‘stored safely’ during breaks and PE. I worry that she is going to find the level of organisation needed to comply with this very challenging and that it will only add to the anxiety she is already feeling about staying organised for GCSEs.

Overall, our experience has been that there is a real lack of awareness about Dysraxia and its impact. When my daughter was first diagnosed, we found the reaction of friends and family varied from disbelief to ignorance and judgement. One friend asked me if I really believed Dyspraxia existed because in her day kids would have just been clumsy. Other friends said she couldn’t have Dyspraxia because she was academic and could play the violin. One even tried to prove that she didn’t have Dyspraxia but lack of 3-D vision, while some family members asked what we could do to ‘cure her’. It was strange because people didn’t seem to fully understand what Dyspraxia was but at the same time, they didn’t want her to have it. They had made a value judgement about something they didn’t understand because they perceived it as being a label.