Dyspraxia: A disability that nobody can see

Luc Carpenter at home in Clane. Photograph: Bryan O'Brien

Luc Carpenter at home in Clane. Photograph: Bryan O'Brien

 

LUC CARPENTER often cries all the way home from school, complaining that he is hungry or that he has had a bad day or that somebody has been mean to him.

As a seven-year-old boy with the “hidden disorder” of dyspraxia, the school day is a huge ordeal physically, academically and socially. He is exhausted afterwards.

The moment his mother, Michelle, gets him back to their home, in Clane, Co Kildare, she needs to give him food, as he will probably have eaten little if anything since breakfast. Then he has a break before they face the challenge of homework.

His writing is “absolutely appalling”, she says. “I have to say, ‘I will do this line if you do that line.’ Spelling – it is like banging your head against a brick wall. At the moment he seems to be good at maths, which I am highlighting.”

Dyspraxia, or developmental co- ordination disorder as it is known medically, is an immaturity in the way the brain processes information. It affects the planning of what to do and how to do it. It is estimated that at least one child in every class of 30 has the condition, although the degree of severity varies and it often co-exists with other disorders, such as dyslexia and attention deficit/hyperactivity disorder (ADHD).

Once known as “clumsy child syndrome”, it usually becomes apparent during the early school years. Affected children have poor muscle tone and have difficulties with simple motor tasks such as running, doing up buttons and using scissors; writing, dressing and self-feeding are likely to be problematic. They may fall over frequently and bump into things.

It is such a “messy disability”, says Michelle. “His trousers will be hanging off; he forgets to pull up his underpants properly.”

Four times as many boys as girls are diagnosed with dyspraxia, but there is a theory that girls go undiagnosed because not so much attention is given to their ability to kick a ball from an early age – difficulty doing that is a classic symptom of dyspraxia.

It used to be believed that children would grow out of their “clumsiness” but research has shown it is a life-long, incurable condition. Therefore they need support in learning how to cope with the difficulties they face.

Last year, when Luc had an occupational therapy assessment, Michelle told the therapist his knees looked like a child with rickets.

“She said this was the poor muscle tone and that he was in pain every single day writing in school. My heart breaks when I think of this – to think he has to go through this for six hours every day and then has to face social rejection as well. It’s just awful,” says Michelle.

He needs occupational therapy to improve his muscle tone, but she has been told by two HSE staff members that none is available under the public healthcare system in the Kildare region; at €70 a session, Michelle says they cannot afford to send him to a private therapist.

However, a spokeswoman for HSE Dublin Mid-Leinster tells The Irish Times that a paediatric occupational therapy service for children has been running in Kildare since 2007.

“Children who are attending primary school with occupational therapy needs, who are not attending another service provider, are, in the main, eligible to access this service.” (At the time of writing, Michelle is following up to see why Luc is apparently not covered by “in the main”.)

Luc, who is the second child of Michelle and her husband, Chris, arrived two years after Sorcha, who is now nine. They also have Cúan (four) and Saul (two).

“I knew Luc was different right from the word go, but people would say, ‘Oh that’s a boy,’ ” says Michelle, who is one of four girls with no brothers.

“He was really difficult to settle as a baby; I used to carry him in one of those slings. I just couldn’t settle him and had huge problems feeding him.”

She wondered where she was going wrong. “He never crawled; he bum-shoved. He was late talking; he was late reaching all the milestones.”

Luc was also “horrendously clingy”, and they had trouble with childminders. He had a permanent bump on his forehead from frequent falls, necessitating five stitches on one occasion.

“He is not a bold child at all,” Michelle stresses. “He tries so hard, but he is always falling.”

Luc did not settle in the first two pre-schools they tried, and in the third one the woman in charge recognised there was something different about him.

But Michelle knew nothing about dyspraxia until, just before Luc was due to start school, she stumbled across information about the condition on a website.

“I went, ‘Oh my God, that’s him’.” She rang the number that was given for the Dyspraxia Association of Ireland and told the man who answered, “I think my son’s got dyspraxia.”

“It’s hard to say that,” she says, but at least she was then advised what to do and where to go to get a diagnosis. Now, as public relations officer for the association, which is in desperate need of funds to keep a support network going, she is determined to raise greater awareness of the condition.

“We want it to roll off the tongue, like dyslexia. People just don’t know about it,” says Michelle, who, before she had children, worked with the European Central Bank in Frankfurt on the launch of the euro.

The Carpenters decided to see how Luc would get on in school before they looked for a diagnosis but, very soon, problems became apparent. An occupational therapist pinpointed dyspraxia and later a paediatric neurologist diagnosed dyspraxia with possible

ADHD as well, although they and other professionals are inclined to disagree on the ADHD.

“His muscle tone is so poor he can’t sit still, and that is where the problem is,” says Michelle. “He is not hyper at all.”

A later psychological assessment concluded that Luc also has mild autism, which is classic in dyspraxia, says Michelle. This diagnosis means Luc gets five hours of resource teaching a week at school.

Parents of children with dyspraxia get no specific support from the public healthcare system, says Michelle.

Although she managed to secure the domiciliary care allowance after she gave up her job in administration and communications with Wyeth in Clondalkin, Dublin, she knows lots of other parents of children with dyspraxia have been turned down.

They have an au pair who, she says, is important “for all their sanity”. If she did not have a child with special needs, Michelle says, she would be able to cope on her own while Chris, a web designer with The Irish Times, is at work.

Luc needs extra help all the time. “It is very hard for a dyspraxic child to follow instructions. If you say, ‘Luc, get dressed and put your shoes on,’ you will find him sitting on his bed with his pyjamas off and he will have forgotten what you said to him.”

His difficulties with socialisation are particularly heartbreaking for his parents, and he was subject to “ferocious bullying” last year.

However, she says his school, the gaelscoil in Kilcock, is excellent and does everything it can for him.

“He tends to fixate on one friend, and the one he is fixating on now really does not have an interest in him.”

When his parents invite a child around, Luc is likely to end up falling out with them.

“He just doesn’t have the social cues. He wants them to play his game, like a two year old; he doesn’t understand, okay, we will play your game first and then mine.”

Michelle is glad some of the resource hours at school are now being used to work on his social skills. “He is so innocent in lots of ways.” She sees him playing out on the road with much younger children “because nobody else will play with him”.

Luc has been invited to only two birthday parties in his life, apart from family ones.

Sometimes Michelle thinks it would be easier if Luc had a disability that everybody could see and understand, then more of an effort would be made to include him.

The Dyspraxia Association of Ireland is running a national coffee morning to raise funds on November 18th. For more information, see dyspraxia.ie or call 01-8747085

‘THE PROBLEMS I HAVE WITH DYSPRAXIA’

In the words of an 11-year-old:

Tired hands

Spellings

Mixing up words

Taking work down from the board

Reading in the class in case I make mistakes. I get nervous about it

Worrying about tests

Eating some food I might spill

I forget to swallow when I cry and I dribble a lot

Walking into things

Brushing my hair

Tying my tie and buttons

Remembering things

Catching a ball

Writing

Hurling

My words get mixed up when I am talking and when I am reading

Sore joints

Really bad at bumping into things

Remembering patterns

Worrying if my words are right

Sore neck from looking up at the white board and my back hurts from the chair.

Written last May by Amy Jayne McCrossan Donnachie, who is now in sixth class at St Mary’s National School in Cobh, Co Cork

‘Because it is not apparent when you first meet someone, people can be quite dismissive of it’

It was only when Rion O’Farrell-Walsh started university at the age of 17 that she became acutely aware of how dyspraxia affects her life.

She was diagnosed with the condition when she was eight years old, but it was “relatively unheard of” and nothing more was done about it.

She knew she was clumsy, always falling and bumping into things, “but it did not emerge as a concrete problem until I was in third level”.

She says she was so sheltered and supported through primary and secondary school in Waterford that it was only when she was out on her own that she really started to struggle.

Studying for a psychology degree at UCD, she found planning, self-organisation and social aspects of college life very difficult. She began to research dyspraxia and “put two and two together”.

Even as a younger teenager, she found dyspraxia beginning to impinge on her social life: “I worried about falling and making a fool of myself.” This anxiety was multiplied when she was no longer among the peers she had grown up with.

Her self-esteem also suffered.

“I might have appeared a little bit careless and haphazard,” but people would have been unaware that there was a root cause of her disorganisation.

Rion, now aged 22, did not go to the college’s disability support service until her final year, but she wishes she had gone earlier. She did not avail of extra time for exams or the option of sitting them in a separate room.

“If I could go back, I would definitely have welcomed the support.” But at the time she did not want any preferential treatment. “Looking back, though, I think I did need it in some areas and it was deserved.”

She has just completed a master’s degree in applied psychology at Trinity College Dublin, for which she did a dissertation on the social experiences of people with dyspraxia.

She found between 60 and 80 per cent of those with a diagnosis of dyspraxia came above the cut-off point for clinical social anxiety.

There is very little research in this area, she says. “It was great as a person with dyspraxia to hear my experiences echoed in others.”

Four or five interviewees mentioned how tiring they found social situations.

“You are continuously on high alert, trying to manage your balance, not knocking into things in friends’ houses. That level of exertion can be quite tiring and really affect your enjoyment socially.”

It is only in the past year or so that she has started to tell people she meets about her condition, because she thinks there is little awareness of how dyspraxia can be such an issue for people.

“Because it is not visible and not apparent when you first meet someone, a lot of people can be quite dismissive of it, saying, ‘Ah sure we’re all clumsy,’ not understanding the pervasiveness of it.”

Her college friends all know about it and are supportive, she says.

“They know they might have to tell me directions two or three times or give me instructions repeatedly. They make allowances for me losing things, breaking things and falling over.”

She recommends that anybody with dyspraxia should tell people around them and explain what their areas of weakness are: “People can be more understanding then.”