Dyspraxia: When the brain takes the ‘scenic route’
Over 80% of children with Dyspraxia/DCD missing out on crucial treatment, research finds
Oisín Whelan and his mum Catherine. Photograph: Dara Mac Dónaill
A teacher sweeps into the classroom, tells the pupils to take out a certain textbook, turn to page 25 and start writing out answers to question three and then question six, which is over the page . . .
It’s the kind of scenario that plays out in secondary schools every day all over the country. But the chances are that there’s one teenager in the classroom, like Oisín Whelan (13), for whom these simple but rapid-fire commands are extremely hard to follow.
As his mother Catherine explains, when his classmates are well on to step three, her son is probably still just taking the book out of his bag, wondering what page he is to open it at.
It’s not that he is stupid, nor that he is not listening, but Oisín has the hidden disability dyspraxia – or developmental co-ordination disorder (DCD) as it is medically classified – that affects gross and fine motor skills, as well planning and organisation abilities, all to a lesser or greater degree. It is down to the way the brain processes information – it “takes the scenic route”, is how one adult with the condition likes to describe it.
Once bluntly termed “clumsy child syndrome”, due to how it impairs physical co-ordination, it is in fact a life-long condition and is also likely to cause sensory processing issues. Among the estimated 6 per cent of children affected – with at least three times as many boys as girls diagnosed – early signs include by-passing the crawling stage, speech and language delays, slowness at dressing, inability to stay still, barely legible handwriting, unable to tie shoe laces and poor concentration.
One childhood incident before Oisín was diagnosed sticks out in his mother’s mind. She asked him would he mind putting the milk away. He said, “Sure, where does it go?” As she told him it was the fridge, she was wondering how on earth he didn’t realise that.
When she recounted this later to an occupational therapist after his diagnosis, he told her she had to realise he had no categories. “He doesn’t know where things live – it is like having a filing cabinet with no files to put your stuff in.” It would, he added, be up to her and her husband, Michael, to help “fill in all the gaps”.
Oisín, the eldest of two boys, was in first class at primary school when a teacher pulled Catherine aside and asked her if she was aware her son was struggling. She said she knew he was having difficulties with phonics and numbers and had sequencing problems.
But the teacher explained she thought it was a little bit more than that, initially suspecting dyslexia.
Catherine brought Oisín to their GP who referred him to an occupational therapist for assessment in conjunction with an educational psychologist. They did this privately as the public waiting list “was far too long”.
A recent survey of parents carried out by Dyspraxia/DCD Ireland found that 82 per cent of children with the condition are missing out on crucial treatment and therapies due to lengthy public health waiting lists and financial constraints in accessing private treatment.
Catherine believes that, generally, there is low awareness of dyspraxia/DCD “and, more importantly, if they are aware of it they don’t understand it”. But Dyspraxia/DCD Ireland, of which she is a board member, works at raising awareness, particularly among education and health professionals, and it has 13 support groups for parents around the country.
Oisín’s diagnosis of dyspraxia found that his audio learning was in the “supremacy” range but his written and visual learning was in the first percentile. They told her how extremely frustrating this gap must be for him.
“It all fell into place. It wasn’t just that he was being an awkward child, or that he was being difficult, or that it was just a phase he was going through. The poor guy just couldn’t get his head around the stuff,” says Catherine.
Ever since, she and her husband have been trying to do what they can to support him both practically and psychologically to cope with the added layer of difficulty he faces in daily living, from getting out on time in the morning washed and dressed, through his school work, to socialising. Things like audio-learning material that played to his strengths, while grinds at home eased the homework pressure.
“But the bigger underlying problem we had in the primary school was the lack of friends. He is a fabulous, sociable, sunny guy, but he just wouldn’t know where the boundaries were in terms of pals. He would always be butting in and missing the social cues.”
While then Catherine could befriend other mothers and invite children home, so that he would get a return visit, she knew that was all going to change at secondary. It was not long before this transition that she decided the time was right to give him a name for why he found it so hard to do many things his friends could do easily.
“It’s not because you are stupid and it’s not because you can’t do it, it’s because you process it differently and sometimes it takes you a little bit longer for your brain to wire up and give you the skills sets to do it in another way,” Catherine explained to him as they sat on the stairs of their north Dublin home. It helped that Oisín was a Harry Potter fan and that actor Daniel Radcliffe had talked about how he had dyspraxia.
Oisín didn’t see it as a negative and his parents stressed that it wasn’t his “get out card”.
“You can do it, but you are going to need a little bit more support to do it,” is how Catherine put it.
The Whelans chose a private school in Dublin for Oisín because “it just meant he would be a little bit more kept in a bubble”, she explains. They were also impressed that the principal there was the first to ask how did the dyspraxia affect Oisín and what could the school do for him.
The learning support co-ordinator invited him in twice before the start of the year. He gave him a map of the school, walked him through the building and allocated him a top locker at the end of a row to give him extra space.
Catherine got his timetable in advance and colour co-ordinated it – a different colour for every subject, also colour coding the books and putting them in different folders with matching coloured stickers. “It was taking it back to basics so he could turn it around for speed.”
Oisín took a while to find his feet in the new school and Catherine had to make frequent trips initially to drop in things he had forgotten. Keeping, as opposed to making, friends continues to be a challenge. Catherine used to bring him to after-school clubs, now he has to fend for himself.
“It’s hard to watch from the sidelines, I am not going to lie,” she says. He is good to engage with peers but he just doesn’t hang on to them as friends. But she has explained how people fall in and out of friendships and if he has one close friend, which he does, that’s enough.
Now in second year, Oisín is more comfortable in secondary school and his marks are improving. Catherine feels using a laptop for homework is paying off, as he doesn’t have to use so much of his energy in trying to write legibly and can concentrate more on the content.
They are hoping he will have a scribe, or a reader, or the opportunity to type for his State exams. Meanwhile, they continue to try to bolster his self-esteem, to help him realise how smart he is.
“We used to have a thing on the fridge that said ‘take the t off can’t’,” adds Catherine.
For Karen Power, the mother of Aisling (19) who has dyspraxia, there was the frustration of health and educational professionals using the “can’t” word, when she believed in the abilities of her eldest child.
She first had concerns when Aisling seemed very slow to talk in sentences at their home in Co Waterford. But initially she was reassured by an educational psychologist that her daughter seemed very bright and that some children’s speech come on quicker than others.
By the age of 5½, she was just considered quiet at school yet still Karen felt there was something holding her back.
Children with dyspraxia can be “hyper” she explains, jumping on and falling off everything, or be “hypo”, which means they don’t get on the fence to fall off it, and Aisling would have been the latter.
Meanwhile, after trying for some time for another baby, Karen and her husband Michael were delighted to find out that she was expecting twins. But they lost the two boys 23-and-a-half weeks into the pregnancy.
“The grief was huge – and also the anger,” recalls Karen. “Here we have this beautiful daughter with challenges that nobody can figure out and then God goes and takes the two babies away.
“When terrible things happen you have two choices – you either go down in a hole or you try and find some way of coping.”
For Karen, writing fiction proved to be a therapeutic way of exploring her feelings. Although she never intended sharing her stories, she ended up publishing two novels, Butterfly Barn and On Butterfly Wings, that went into the Irish bestseller lists and, as she wrote about what she knew, pregnancy loss and dyspraxia were interwoven into the plot.
Aisling was 6½ before they got the diagnosis and even then Karen believes it was a stroke of luck because the paediatric psychiatrist she was referred to quickly recognised the problem, even though it wasn’t his area of expertise, because his own son had dyspraxia.
He advised her to find an occupational therapist who really understood dyspraxia but in the meantime to do as much as research as she could into the condition, which would enable her to figure out a way to help Aisling.
A trampoline was one of the Powers’ first purchases, which the little girl loved. Obstacle courses were created in the garden, which not only gave Aisling plenty of practice in physical co-ordination skills but also entertained the neighbours’ children.
One occupational therapist told Karen that Aisling would never be able to ride a bike – in fact she cycled without stabilisers the day after her seventh birthday. It was suggested she could be led on a pony because the saddle would be wide enough to ensure she wouldn’t fall off. Today she is an independent, accomplished horse rider.
The Powers, who by now also had a son, got conflicting advice on whether Aisling would be better off in a special school or mainstream but they chose the latter – a small school, none of which her primary peers were going to, but it seemed to have good support resources. However in time Aisling was struggling to cope with “isolation” – bullying by another name.
In third year, the principal told Karen that the school could meet neither her daughter’s academic nor her social needs and did the family have a plan? They didn’t but, having retrained as an adult educator, Karen ended up home-schooling her for the Junior Certificate and, after a transition year of their own creation, Aisling went to another school to sit the Leaving Certificate Applied.
She is now happily studying with the National Learning Network, displaying the very positive, warm and empathetic personality traits that were evident from a young age, which helped her own mother through the bad times.
“If there is one thing we have learned in life,” says Karen, “it’s that no person can ever predict what another is capable of achieving.”
For more information see dyspraxia.ie or ring the helpline 01 874 7085; see also karenpowerauthor.com