Foster 8 - Understanding Diversity

Neurodiversity: a personal account of parenting a child with dyspraxia

Carla Grattan

Synopsis of article

I am a mum to four kids, and I have three cats, two dogs and one husband (in that pecking order, according to my poor husband!). Our lives are hectic, especially now that all my kids are teenagers. One of my sons has Developmental Coordination Disorder (DCD), also known as dyspraxia. It is a common disorder affecting fine and/or gross motor coordination in children and adults. It is a hidden disability, and this can cause many problems. Dyspraxia affects everyone differently. This is my personal account of how it has affected my son’s and my family’s life. My son prefers to remain anonymous.

What is dyspraxia?

Developmental Coordination Disorder (DCD), also known as dyspraxia in the UK and Ireland, is a neurological condition. It is a common disorder affecting fine and/or gross motor coordination in children and adults. This condition is formally recognised by international organisations including the World Health Organisation. DCD is distinct from other motor disorders such as cerebral palsy and stroke. The range of intellectual ability is in line with the general population. Individuals may vary in how their difficulties present; these may change over time depending on environmental demands and life experience, and will persist into adulthood. (www.dyspraxia.ie, 2019).

Background

  • research into this condition began in the mid-1960s
  • it affects six per cent of five to 12 year-olds
  • the ratio of boys to girls with this disorder is 3:1
    • there is a high co-occurrence with other disorders, for example there is a co- occurrence with ADD/ADHD of 40 per cent
    • children do not grow out of this disorder

The earliest signs

When my son was born, we were so excited. We had waited six years for this baby and I had him in my arms the whole time. After a few weeks when I did want to put him down, I couldn’t. He didn’t like lying in his cot or sitting in his baby chair, he always wanted to be in my arms, or in a buggy being wheeled. I blamed myself for holding him too much.

When he was a few weeks old, I was told that he was a ‘floppy baby’ and he was given physiotherapy for a year. After the year of physiotherapy ended, we just carried on, oblivious to what was really going on for him. I had my other son the following year and he was totally different – he would sit for ages content in his chair and didn’t seem to mind if he was picked up or not. He was very calm.

Starting school

At playschool they told me that my son couldn’t ‘colour’. I thought that not everyone is artistic, for example I myself am not artistic. He tired easily, much more than my other son, and this became more apparent as he grew older. He’d watch telly nearly upside down on the couch, he just couldn’t sit still. Most mornings, when we were heading out the door to school, he’d have hair gel on the toothbrush and toothpaste on the hairbrush. He’d spill his Weetabix all over his school uniform. I was so frustrated. I thought he was so clumsy, and that this must be a ‘boy thing’.

When my son went into first class, his teachers told me he couldn’t cut with a scissors. Later, he never was able to do his homework when he came in from school, he was too tired then. Instead he would get up at 6am to do it. At first, I struggled to believe this as my other kids were able to come in and sit still and do their homework with no interruptions. I knew he was clever. He always scored high on the STENS (standardised tests) in school. In third class, the teacher asked me to get him assessed at the Centre for

Talented Youth in DCU as gifted, because if she didn’t know the answer to a question, he would be able to supply it. He was assessed as gifted at DCU, but his dyspraxia was not picked up on at this time. He was not good at football. This used to break his heart as he loved football, but he never got chosen to play. He used to cry over this.

His handwriting didn’t improve in third class so by fourth class he was always getting into trouble. His teacher would put the red pen all over his homework and this would upset him a lot. Also in fourth class, during the bad winter of snow, he and his classmates were making a snowman. They all got different jobs to do. He got into trouble for dropping the snowman’s head and was put in the corner of the yard. He was devastated. I knew that he hadn’t dropped it on purpose, I knew that it was because of his co- ordination. He was very upset that no one believed him, and that instead they maintained that he had done it on purpose.

My mother-in-law was a school principal and had a Master’s Degree in Special Needs Education. She suggested that my son had dyspraxia. I had never heard of dyspraxia, so I looked it up and rang Dyspraxia Ireland to ask advice. They were very helpful and explained what dyspraxia is, how it affects a child, how to go about getting assessed for dyspraxia and what can be done to make your child’s home and school life easier.

Treatment

There is no cure for dyspraxia/DCD, but the earlier a child is treated, the greater the chance of improvement will be. A lot of the skills that we take for granted will never become automatic for children with dyspraxia/DCD, so they will have to be taught these skills. Occupational therapists, physiotherapists, and extra help at school can all assist these children with coping with or overcoming many of the difficulties they face.

Diagnosis

We went to see an occupational therapist to get my son assessed and he was diagnosed with dyspraxia when he was 11 years old. He was devastated. He felt his world had ended. He needed time to grieve, to understand and to acknowledge it. We had to find a new way of thinking, living and adjusting to family life. My son is a handsome, intelligent, kind, caring, loving child who has more friends than you could shake a stick at. After he was diagnosed, the report recommended that provisions be put in place to assist him in school. Normally he would have qualified for a laptop in primary school as

an alternative to writing by hand, but this didn’t happen. However, in sixth class he had a lovely, understanding teacher who would bring him to the top of the class and just ask him questions so that he wouldn’t have to write things down.

Secondary school

When my son went to secondary school everything fell apart. Dyspraxia seems to be easier to control in primary school as you are only dealing with one teacher. In secondary school you are dealing with 15 teachers, to whom it is more difficult to gain access. My son found it very difficult to settle into secondary school. He did receive a laptop as a learning aid but he tried his best not to use it as he didn’t want to draw attention to himself as being different. The increased amount of handwriting he had to do as a result, taking notes down in class, and the risk that he could be late for the next class due to the slow speed of his writing, caused him considerable stress.

Dyspraxia means that children experience difficulties in taking notes down from the board. Commonly, the eyes jump and easily lose their place on the board. My son would lose his place on the board and also on his copy page when he would look back down at it. This meant that he wouldn’t write down his homework at all as he’d be so slow in writing it and it would result in him arriving late for the next class. One possible solution when it comes to difficulties with focusing between the board and the copybook, can be to get the child assessed as to whether they need glasses. These glasses aren’t for poor eyesight but rather they are specially designed to stop the muscles in the eyes jumping. (See the list of resources at the end of the article for a supplier for these glasses).

On one occasion, my son got into trouble as he hadn’t written down his homework and the teacher noticed this. She called him back into the class but he didn’t come back when she called him as he didn’t want to tell the whole class he had difficulties. Later that day, I received a phone call from the teacher, complaining about his behaviour. This is just one example of the many misunderstandings that can arise when teachers are not informed about disabilities such as DCD/dyspraxia. Most of the problems for children with dyspraxia in the school setting are due to their challenges with concentration, memory, organisational skills and planning. Also, children with dyspraxia can find sensory challenges in noise levels, and in the sensation of new materials in school uniforms. All of this means that they may not be as self-sufficient as another child of the same ag

 
 
 

Secondary school holds a lot of challenges for every child but a child with dyspraxia has a lot more difficulties to face.

Common challenges for older children with dyspraxia

My son’s late diagnosis, at 11 years of age, meant that he struggled significantly to accept it. He didn’t want help; he didn’t want a label. He denied that he had it. The biggest obstacle was his trying to hide his dyspraxia and denying that he needed help. He gets tired really easily and this has become worse as he has grown older. In his first year of secondary school, he was sick every Thursday, literally vomiting due to tiredness. This was not tiredness due to lack of sleep – it was due to all the effort it takes for someone with dyspraxia, with poor muscle tone, to sit in school all day, to try and stay upright in the chair and keep concentrating.

Secondary school holds a lot of challenges for every child but a child with dyspraxia has a lot more difficulties to face. Swapping classroom every 40 minutes can be a challenge as children with dyspraxia have difficulty remembering which classroom they are supposed to be in, and which books they are supposed to have for that class. New subjects require new skills. When my son was going into first year, we had great difficulty choosing subjects. Art and technical graphics were both out of the question because they each require fine motor skills. He eventually decided on home economics and woodwork. I was very worried about his taking on woodwork and, after getting advice from some people, we realised that all the effort that he would have to put into the subject would not be reflected in the results he would get, so he switched to business studies before starting his first year of secondary school.

Using a locker in secondary school caused problems which I never knew existed. And it brought up important questions for my son regarding the fine motor skills required to use a locker, such as: is it too low or high? Is it in the middle, therefore difficult to get to? The children were not allowed to go to their lockers between classes, and so my son was still carrying around all the books for six subjects from 9am to 1pm when I collected him for lunch. He lost innumerable keys and had problems getting the larger books in and out of the locker, especially if that locker was in the middle of the row.

There can be well-meaning interventions on the part of the school that have unintended negative consequences for children with dyspraxia. My son’s school bag was so heavy that he fell a few times in the first few weeks in secondary school. In response to this, the school very kindly bought him a second set of books so he could leave his original set of books at home and each teacher would give him a book in every class. This was disastrous as he felt self-conscious going up to each teacher at the start of each class to ask for the book, and it made him feel different to the others. Now kids can get a set of books on their laptop to save them carrying books in school and they can get a set of books for home if this helps.

 

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Teachers see an intelligent child, slouching on the chair, handing up poorly written homework or forgetting their copy and they don’t understand what is causing the child’s behaviour. Because it’s a disability that can’t be seen, people don’t believe it exists.

Dyspraxia means you can have difficulties changing into and out of uniforms. Children with dyspraxia can take longer to change after PE, and so they get into trouble for being late to their next class. It’s important to come up with strategies to help your child cope. Ask them if they want the teacher they have after PE to know about their dyspraxia so they don’t give out to them, or else they can ask to finish PE earlier to get changed so they are not late for the next class. It’s important to make teachers aware that the child has dyspraxia. My son would score a B in his school reports for PE but the accompanying negative comments, such as ‘not trying hard enough’ or ‘could do better’ showed me that they didn’t know he had dyspraxia, or if they did, they didn’t understand how it affected him. One solution to the difficulty of changing into and out of clothes is to have Velcro instead of buttons on trousers and Velcro straps on runners to avoid laces, but this is usually a solution more appropriate for younger children as teenagers don’t like being different.

Sports can be extremely challenging for a child with dyspraxia so it’s all about encouraging them to do something they like. There is no point in them being on the football team if they never get picked to play and are miserable. Let them find their own niche. In my experience the Scouts offers a great alternative as you don’t have to be the best at anything to take part and it is a good place to make friends with children from many different schools and backgrounds.

Dyspraxia is a hidden disability, and this is what I have found has caused the most trouble, so far, i my son’s life. Teachers see an intelligent child, slouching on the chair, handing up poorly written homework or forgetting their copy and they don’t understand what is causing the child’s behaviour. Because it’s a disability that can’t be seen, people don’t believe it exists. I hope that the following things to watch out for will be helpful for caregivers and teachers in coming to understand more about this condition.

Signs of dyspraxia

  • history of delays in reaching milestones, for example, rolling over, sitting, walking and speaking
  • may not be able to run, hop or jump
  • appears not to be able to learn anything instinctively but must be taught skills
  • struggles with dressing
  • slow and hesitant in most actions.

Preschool

  • cannot do jigsaw or shape-sorting games
  • artwork is judged as ‘immature’ for the child’s age
  • has no understanding of in/on/behind/in front of, and so on
  • unable to kick or catch a ball.

Primary school

All of the challenges experienced by the pre-school child may still be present with little or no improvement. The following issues may also surface:

  • physical education is avoided
    • the child fares poorly in the class setting but significantly better on a one-to-one basis
    • the child’s attention span is short and the child may react to stimuli without discrimination
    • maths and copying from the blackboard may present significant challenges
    • writing is laborious and ‘immature’
    • the child may be unable to remember and/or follow instruction
  • in general, they struggle to be organised
  • they are often anxious and distractible
  • they may have difficulty with keeping friends or judging how to behave in company
  • they may have difficulty sitting for long periods.

Dyspraxia is a hidden disability but with more awareness, understanding and patience, and by putting small things in place in the home and in school you can make a child’s life much easier and less stressful. This can also reduce anxiety, which is very commonly experienced by children with dyspraxia.

Postscript

After missing most of sixth year in school, my son sat his Leaving Cert. He did mostly honours subjects and passed everything. He got a place on a degree course in a university, and he is so happy!

About the author

Carla was a nurse for over 20 years and holds a Bachelor of Arts in Media Management. She also holds a certificate in counselling and is a qualified trainer. She runs the parents’ support group for parents of children with dyspraxia in Dublin South West. She is a member of the Social Entrepreneurs Ireland (SEI) 2019 Academy with her project Thinking Talks, which aims to increase understanding of dyspraxia amongst teachers and therefore to reduce stress and anxiety in children with dyspraxia.

 

Resources

Parents support group for children with dyspraxia, Dublin South West

(dyspraxiadsw@gmail.com)

Thinking Talks

carlasthinkingtalks@gmail.com

Dyspraxia Ireland

www.dyspraxia.ie

+353 (0)1 874 7985

Margaret Barrett Opticians (for specialised glasses for ‘jumping’ eyes) https://barrettopticians.ie

+353 (0)1 838 4287