Dyspraxia, a form of Development Coordination Disorder (DCD), in children and adults, is characterised by difficulty with thinking out, planning and carrying out sensory/motor tasks. Dyspraxia affects up to eight per cent of the population, but due to its varied symptoms, it can often go undiagnosed.
We spoke to Karen Power, a mum and best-selling novelist from Waterford, about discovering that her daughter had Dyspraxia.
“Our daughter Aisling was born in 1997. Her name means dream or vision in Irish, and that’s exactly what she is to us, our beautiful so-longed-for baby. Nineteen years later, my love for her continues to grow, and my admiration for her knows no bounds.
Aisling was a healthy, happy little girl who understood everything she was asked. She bypassed the crawling stage and walked at thirteen months. I was thrilled. Back then, I didn’t know crawling is important for developing co-ordination, and it would be a question that would constantly come up.
She met all her developmental milestones except that at three-years-old she would still point when she wanted something instead of saying the word. I brought this to the attention of the GP, who upon my insistence recommended a visit to an educational psychologist (a senior one at that). He told us she was very clever and that she recognised all her colours, could identify any cards presented and could stack blocks appropriate to her age. His advice was, “She’ll talk in her own good time.” Then he added, “Some children often bypass the two and three words stage and go straight to full sentences.” Needlessly to say, we bounded out of that office happy, but £200 lighter in our pockets. We were fully sure everything would be fine.
But it wasn’t. So we decided to try speech therapy. (The public waiting list was three years long at the time). Three of her best developmental years would be lost if we didn’t find the money to go privately. I eventually found a wonderful speech therapist and Aisling did very well with her. But she was also concerned that something was still holding Aisling back.
At this point Aisling was six-years-old. At school, the teacher said she was quiet, well behaved but easily distracted, and not very well organised. She also found it hard to mix with other children. So I went back to the GP and this time she organised an appointment with a child psychiatrist. I remember handing over an educational psychologist report along with a speech and language report and asking if he would read these reports, and please tell me what is going on before I’d be the one needing a psychiatrist.
As long as I live, I will never forget this man’s kindness. As I sat quietly, he read the reports. Then he went to where Aisling was playing on the floor with a large jigsaw puzzle. He talked to her, and she interacted well with him. After a while, he turned to me and said. “I believe Aisling has a motor coordination difficulty called dyspraxia or DCD. It is not a psychiatric condition; it’s a neurology problem. Messages from the brain to the muscles in the body are delayed. It is sometimes referred to as ‘clumsy child syndrome’ but it can also affect speech sounds and language processing. I’m aware of it because my son was diagnosed with it in the US. Does she find stairs difficult?”
“Not that I noticed, we live in a bungalow,” I replied. But something clicked inside as he began to explain that children with dyspraxia have problems with spatial awareness. Which means that they find it difficult to judge distance, going up and down a stairs is difficult. Hopping, skipping, and jumping are impossible, cycling a bicycle is a huge challenge, playgrounds are a nightmare, and amusements parks are avoided at all costs. Loud music is scary, tying shoe laces, zips, buttons, coordinating a knife and fork, spillages are common. In other words, all the tasks of daily living, brushing teeth, hair, are difficult. Before a child with dyspraxia leaves the house to go to school, they are exhausted because of their low muscle tone. Some find it difficult to sit upright in the chair. When a teacher asks to take out a book, by the time they find the book, then the page number the other kids are half way through the story. So a child who is already easily distracted now doesn’t know what she is supposed to be learning and so the gap widens.
As I listened, I remember feeling overwhelmed. How didn’t I notice? But what stuck in my mind most was when he had said:
“Dyspraxia is not a psychiatric condition. If you allow her self-esteem to be effected, then it will become one.”
No matter what, I would not let that happen. My heart thumped as he continued. “You need to find an Occupational Therapist who understands Dyspraxia. Contact an association called Dyspraxia/DCD Ireland, and they will guide you. Research as much as you can because many professionals will tell you it doesn’t exist. It will be a long road. But remember, children who have dyspraxia are generally of average -to-above-average intelligence, but this is not always evident in assessments. You will have to believe in her and encourage her as much as possible.”
I was lucky that day. Finding a word to explain what might be happening in your child’s life, is enlightening. I contacted Dyspraxia.ie and met the wonderful, Harry Conway. I was able to talk to someone who understood and more importantly cared. There is a list on their website about how Dyspraxia affects everyday life. I remember reading that to my family and some close friends. In their keenness to take away the worry, they would say things like:
“I can’t tell my left from my right. I could never tie my shoe laces. I couldn’t cycle a bicycle. I was always a bit awkward.”
But Dyspraxia is more than that. Without intervention in the form of strategies and repetitive physical exercises that entail crossing the midline, daily life and learning with continue to be a huge challenge. Dyspraxia doesn’t go away, but it can dissipate. Just like for anybody else, practice, practice, practice will improve whatever skill you are working on. The problem is that a child who has Dyspraxia has to apply that to all the small tasks you and I take for granted. If you are wearing a watch while reading this, take it off and put it on your other wrist. That’s what someone who has Dyspraxia feels like every day. You can understand how frustrating it is when you know what you want to do but your muscles won’t work the way you’d like them to.
It’s been fourteen years since the first time I heard the word ‘Dyspraxia’ and that lovely, kind man was right. I’ve had to spell ‘Dyspraxia’ to OT’s who had never heard of it. I’ve been told by a now promoted educational psychologist that, “I need to deal with reality; your daughter will never make it through the education system. She needs to attend a special school.”
Travelling through the education system has been a long road with many ups and downs. I could write a book on it (maybe someday I will). But we did eventually find a secondary school where Aisling was able to complete her Leaving Cert Applied and was treated with respect, kindness and encouraged every step of the way by both teachers and her fellow pupils.
Encouragement is the best gift you can gift to another person. And remember when somebody tells you that your child will never be able to do x, y or z – don’t take that as gospel; no person can tell what any of us are capable of achieving. As Henry Ford said, “Whether you believe you can or you can’t, either way, you are right.” Our family chose the words, “I can.” Oh, by the way, Aisling cycled her bicycle without stabilisers the day after her seventh birthday and she continues to amaze us every day. We are blessed.”
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