Read an Excerpt
The Hidden Handicap
By Amanda Kirby, Stan Koppel
Souvenir PressCopyright © 1999 Dr Amanda Kirby
All rights reserved.
The Child and the Family
Mothers of children with problems carry a tremendous emotional load. Few occupations carry as much and those that do carry a different kind. Fathers of neurologically handicapped children do not escape from the burden, but they carry it differently.
(A. Jean Ayres, PhD, Sensory Integration and the Child)
What do parents feel when they are given the diagnosis of dyspraxia or DCD or, worse, no label at all? What effect does this have on parents or carers, not to mention the individual?
Parents are usually seen in a children's centre and a paediatrician will tell them what is wrong. If she does not give a specific label she may just describe the problem. The parents often have insufficient time to consider what questions to ask and may go away feeling mystified, not really understanding what they have been told. They may not know how to help their child and could be unaware of the implications. They may have other children and are likely to be comparing the child to them. As they leave the centre they may experience a flood of emotion and feel that they don't know what to do or where to turn. All the problems of school and home still remain to be worked out. What does it mean now? What does it mean for their child's future?
HOW DO PARENTS FEEL?
Before parents have been given a diagnosis they already know that their child is different from other children and they can see that he or she has some difficulties. When they decide to have their child 'tested' they expose themselves to a range of emotions. If you are a parent, not only of a child with co-ordination difficulties, but also of a child who is different from the average, you may feel some of the following emotions:
Frustration. Why has it happened to me? Who should I turn to for help? I don't understand what is wrong. If only he (or she) tried harder I am sure he could ride his bike.
Anger. Why me? Why don't my friends have the same problems that we have? I feel angry with my husband; he doesn't seem to understand what I have to go through, having a child with all sorts of difficulties and trying to cope with the rest of the family Everyone thinks I am just making it up.
Guilt. It must be something I did wrong. Maybe I didn't eat properly during the pregnancy; maybe the delivery was too fast or too slow. Perhaps it is something in my genes. Sometimes I shout at my son, and afterwards I feel that I shouldn't have, but I just can't see why he can't do some of the simplest things.
Isolation. We feel as if we are the only people in the world with a child with these problems, and nobody else seems to understand My child looks normal, but I know he is different. I wish I could talk to someone about it.
Ignorance. What should I do to get help? Who should I turn to? There seems to be little information around.
Relief. For many parents, being given a diagnosis can bring a sense of relief. They may well have known there was something very wrong, sometimes for a long time, but didn't have a name for it. The acknowledgement of the label tells others that they were right. The name means that they can now tell other people what the problem is. It also makes it a 'real' problem, with answers to questions that may have been running around for a long time. It allows them to seek help and gain support. It says they are not being overprotective and it acknowledges and confirms their concerns. It also means they can join a support group. They are no longer alone.
Parents have to work through these feelings and understand what has happened in the past and what can be done about the problem in the years to come. Before children are born we have ideas about how we want them to be brought up and aspirations for the future. Sometimes, having these dashed is one of the hardest things to come to terms with. We then have to decide how much we should expect from our child. Many parents feel the need for guidance and a plan of action. Often, with the DCD child, small steps need to be taken, success achieved and then a plan set for the next stage in his life. A lot of the questions that are asked relate to school. Should the child stay where he is? Should he be in a special unit? Is a private school better than a state one? Many of the answers depend on the individual child, the stage of his education and the problems that he is experiencing at the time, and may need reviewing at different ages.
When he was seven Ben was given the diagnosis of dyspraxia by an occupational therapist. This was in contrast to other reports which had outlined his problems but had not given a diagnosis.
The occupational therapist thought that it might give the parents some hope to be told it was dyspraxia, because he did have some co-ordination problems, although there were others as well.
The diagnosis made the parents think that if they got help for the specific learning difficulty, all would then be fine with their child. In reality Ben was at least three years behind in all 'milestones' and he was also 'globally delayed' (having a low IQ). This meant that the possibilities for his future were limited.
The parents became angry when they were later told that Ben didn't have dyspraxia after all. This was not what they had expected to hear, and all they wanted was to be given some hope. Until then nobody had bothered to explain the implications for the child's learning. The label that had been given in an attempt to help had in fact not been helpful at all, but had masked the true diagnosis and the need for the parents to understand what they could realistiically expect for their child
Magic wands and quick fixes don't exist for these children, although parents always hope that there may be a 'cure' around the next corner. They need to accept that change will be slow, and at times this can seem hard when all they want is to protect their child from his problems. The DCD child needs a consistent approach to his learning, both in school and at home, if he is to reap benefits.
As in Ben's case, it happens that professionals who lack the appropriate training or qualifications may give a label of dyspraxia or DCD. The parents hear the label and assume that the child has definitely got the problem although this may not be so. Some children get misdiagnosed — they may have cerebral palsy, for example — and after years of coming to terms with the first diagnosis the parents may have to adjust to the new one. This can be particularly hard to cope with.
The child with co-ordination difficulties will have an impact on the whole family and at times may limit their activities. For example, if one child cannot ride a bike then the whole family cannot go out for a bike ride together. The child with feeding and social difficulties can also limit outings and contact with other families. Going out to a restaurant can be embarrassing if the child ends up spilling food everywhere. Parents sometimes even feel angry with their child and end up preferring to stay at home, away from other people. Criticism from others, even the odd frown, can be painful if you already feel sensitive about the situation.
Tension can also rise between the parents of the child when there is a lack of understanding or support. Some fathers may have seen their child as a potential rugby star, and when these hopes are dashed because the child can't even catch or throw well, disappointment, anger and frustration may creep in but not be openly discussed. The father may not have been able to attend hospital or school appointments and may not have the same understanding as the mother. He may feel ignorant about his child's difficulties.
Problems may be highlighted even more when another sibling comes along. This younger child may reach milestones, such as walking and talking, at a much faster rate. The child may then pass the other one in some skills and this accentuates the magnitude of the problem. This gap may widen as the children get older.
What can you do as a parent?
[check] If you think there is a problem with your child, ask for help. If you don't get it at first you may need to keep asking. Is there a local Dyspraxia Foundation support group in your area? Meet other parents who may have experienced similar problems and found answers. If there isn't a group near you, consider starting one — you could just ask a few parents round for a cup of coffee and a chat. Ask the teacher in your child's school if she knows of any other parents who have children with similar problems.
[check] Join another support organisation, like Afasic or the British Dyslexia Association, if there isn't one for dyspraxia in your area. The parents will have had similar problems and experiences and will provide support and information.
[check] Talk to other people. You will be surprised what you can find out, and remember, you are an expert too. You will have found ways round problems which will also help others.
[check] Read about the problem, knowledge is very powerful. Look on the Internet, go to the library, and ask the therapist who sees your child if she can recommend some books or leaflets. Also ask your child's teacher how much she knows.
[check] Give out information to others — you may help other parents.
[check] Talk to each other, parent to parent. Feelings of frustration can get bottled up inside and just surface as anger. You may not have talked to each other about how you feel and may both be feeling inadequate in different ways.
[check] Seek help for your child. You will then feel more in control of the situation.
[check] If there are professional health and education meetings in your area, consider going along. This is also a good way of networking, and you may find out the latest information and research into the problems. You can always ask questions if you don't understand it all at the time
WHAT ABOUT THE CHILD HIMSELF?
How much does your child know about his problem? Have you ever discussed it with him? Parents often feel that they shouldn't talk about this with their children as it may make it worse for them. How much should your child know? What should he tell other children if he is called names? What is the best way of equipping him?
By the age of six the child with dyspraxia will already have a clear idea that he has problems and is different from other children. He can see that he can't achieve the same things at the same pace as his peer group — he may not be able to ride a bike, or his handwriting may look different from other children's. Even worse, he may see that he is not invited to other children's parties, for example, and feel both frustrated and angry. One child of six, who was seen at a specialist centre, said that all he wanted was to be dead. He had even thought about how he might kill himself, and his emotions were very real.
Sometimes as parents we do not allow children to show how they feel and unknowingly encourage them to remain bottled up. It is thought wrong for them to be angry or upset, even though we as adults show these emotions. Children, like adults, need explanation and support. For example, the child's behaviour may be fine in school, and he may seem to be able to hold himself together very well. Teachers may tell his parents that he sits very quietly at the back of the class, not joining in very much but not being disruptive. The parents cannot believe this is the same child who, when he gets home every night, is loud and quarrelsome, even physically aggressive towards other family members. The child sees home as his safe haven and knows that, whatever behaviour he displays, at the end of the day his parents will still love him. This is why he shows his frustrations at home. Of course this can be very exhausting for the parents!
Your child may well have been bullied and you may need to deal with this as well. It may be manifested physically, by shoves and pushes in the playground, or verbally, by attacking the way he looks or acts. This is very wounding for a child who is trying to sort out who he is. He is also seeking friendship and wants reassurance from his peer group. (See chapters 8 and 11 for advice on dealing with this.)
Tips to help
[check] Talk to your child and explain that he is different, but so is everyone else in some way. He needs to know and feel special about himself. He needs to see that there are solutions to his problems.
[check] Allow him to come and tell you when things are not going right, and let him see that you believe him.
[check] He cannot use his problems as an excuse for bad behaviour. Accept his feelings but also tell him you don't always accept his actions if they are inappropriate.
[check] Explain to others about his problems so that they give him a chance and are a little more patient with him.
[check] If possible, let your child meet other children with similar problems so that he doesn't feel he is the only one.
[check] He could have a pen or tape pal.
BROTHERS AND SISTERS
What does it feel like to be the brother or sister of a child with dyspraxia or DCD? Is there the same sibling rivalry that is seen in every family or is it different for these children?
Having a child in the family with co-ordination difficulties can have a profound and unsettling effect on the siblings. They have a range of emotions that they have to deal with themselves. Parents may not even have discussed what the problem is with their brother or sister, or they may have done so only in hushed tones. However, they see that their parents need to spend more time with their brother or sister and they may become resentful of this.
What do the siblings feel?
Anger. Why do we have a brother or sister with a problem? It stops me doing the things that /want to do. We can't all go out for a bike ride when we want to. He always seems to be getting more time and attention from Mum and Dad than I do.
Sympathy. I feel sorry for my brother, he seems to try hard but never has any friends. I get asked out to parties and he seems to be at home all the time. He's so clumsy, he is always spilling things all over himself. If only I could help him, but I don't know what to do.
Ignorance. What is dyspraxia? No one has explained it to me at all. He just seems to be a pain. If I understood then perhaps I could help, at least I would know why he has these problems. Support. I make sure he's OK in school. The other kids go after him in the playground and call him names. I hang around, as I'm bigger, and threaten them if they touch him. I do worry about him, though.
Embarrassment. I can't believe how he behaves when he's with my friends. He acts the fool. He spills everything when we're out. I just wish he would go out when my friends come round. The other day he came in with his trousers down to ask Mum to wipe his bottom!
Tips to help the siblings
[check] 'Ring-fence' times for all your children. Whether it is a short time each day or once a week, give them each a set time. Whatever times you choose, stick to them.
[check] Let their class teacher know they have a sibling with difficulties. It may affect them at school if their brother or sister is having problems.
[check] The support group may organise parties where siblings can also go. Bring them along, so that they can see they are not the only ones.
[check] When they have friends round, try to make sure they have their own space and, if you can, occupy their brother or sister so that he or she doesn't embarrass them. They still need their own space at times.
[check] Try to do activities that can involve the whole family — for example, bowling, badminton, swimming, going for a walk, going to the cinema, rather than one that excludes part of the family.
[check] If you can, let each child have a hobby that is different from the others so that there are no comparisons.
QUESTIONS YOU MAY ASK
Well, it could be anybody. DCD does seem to run in some families and, as previously stated, affects three times as many boys as girls. Some children also seem to have a family history of dyslexia.
Did I do something that I shouldn't have done while I was pregnant?
So far we haven't seen any link between pregnancy and this type of problem, but this requires further research.
Is it because I didn't give him enough attention when he was a baby?
No. Most parents have usually been very attentive. However, as your child has a problem you may need to play certain games or do some exercises to help him.
Excerpted from Dyspraxia by Amanda Kirby, Stan Koppel. Copyright © 1999 Dr Amanda Kirby. Excerpted by permission of Souvenir Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.