Working with Parents

as Partners in Special Educational Needs

Eileen Gascoigne

• Publisher: Routledge
• Year: 2014
• eBook ISBN: 9781134088010
• Edition: 1
• Topic: Education
• Subtopic: Education General

First Published in 1996. This book forms part of a series that brings together wide-ranging contributions which: offer an assessment of what has been achieved; explore a number of problematic issues and experiences and illustrate developments that are beginning to take shape. It will appeal to those with a special interest in and commitment to home-school work in all its actual and potential facets. This book is intended to be read not only as a single exposition, but also as a practical guide to help professionals get the best out of their partnership with parents, to be referred to as teachers and others approach different aspects of special needs in different cases.

1 Parental experience

The diagnosis of a special need in a young child is a very distressing event for parents whenever it happens, whether at birth, in the early months, or when the child is already at school. Recent research by SCOPE (previously the Spastics Society) has examined the experiences of a number of parents whose children were diagnosed very early in their young lives. Readers are encouraged to study a copy for full details of this research, which demonstrates the response by parents to professionals according to the factual content, timing and attitudinal approach of the disclosure.

There are important conclusions for educational professionals in this research report. First of all, the fact that a child has been diagnosed as having a certain condition or syndrome many years earlier does not mean that the emotions experienced by parents have faded away by the time their child begins school. Although most parents do accept their child’s disability or handicap, it would be wrong for any professional to assume that the parents have therefore ‘come to terms’ with it. It does not take very much for the emotional reaction to diagnosis and disclosure to come back to the surface in later months or even years. Many of those included in the SCOPE research were parents of adult people with handicaps of one sort or another. Their memories of the moment – or phase – of disclosure are still very real and very detailed. This applies not only to the facts surrounding the event – what the doctor was wearing, who was in the room, what the trees outside the window looked like, the actual words used and so on – but also to the emotions experienced at the time. Parents don’t only remember how they felt, they experience all over again those same emotions and reactions: despair and anger; rejection and love simultaneously for their child; bitterness at the attitude of professionals – or conversely, respect for the professionals who dealt positively with them.

When a parent comes to a teacher in school, or to a psychologist at an assessment, or to a gathering of professionals in a case meeting, these feelings are still there, kept in check for the most part, but rarely far away. Often they come back to the surface in a most unexpected way, and at a most inopportune time. Even when the events that initially caused the strong feelings are in the distant past, those feelings can very easily be resurrected without warning.

I can remember being in a case meeting going through my son’s history. The occasion was the introduction of a new professional to the ever-extending network who had been involved over the previous eleven years. One would have expected that, after eleven years of covering his history with various professionals, time and frequency of retelling would have inured me to the full emotional reaction. Part way through recounting the history, I was bewildered as to why this professional, and my husband, were looking at me with increasing concern on their faces, and could not understand why the words in my head were failing to come out through my mouth. Eventually, my husband leaned over, took my hand and said, ‘Stop trying to talk.’ Only then did I realise that I was crying, the tears rolling down my cheeks, my eyes getting redder and redder, and my voice cracking. It took me almost twenty minutes to recover sufficiently to rejoin the conversation, which my husband had been able to pick up in the meantime.

(Mrs K, talking about her son N who has Asperger syndrome.)

Professionals who come into the picture long after the child’s needs have first been recognised, or an initial diagnosis made, must remain aware of this. Just because a parent has been coping with their child’s disability or handicap for the past three to five years does not mean that they are objective about it. They can review their child’s needs quite calmly, offer suggestions as to how the child can be accommodated and handled in the classroom, and listen to suggestions made by professionals regarding home–school links. Do not imagine that this calm exterior reflects a calm inner self. When a child first ventures into school, away from the constant care and supervision of their parents, there is an additional cause of fear and anxiety that by handing over a significant portion of their child’s welfare to another person or organisation, they may be failing to maintain an appropriate level of support.

The transfer of any child from the parent’s complete care into the hands of professionals whose job it is to look after up to thirty individual children is very difficult for any parent. Surrendering that responsibility for the special needs child is particularly so. Over the pre-school period, the child’s parents will have learned to adjust their whole way of life to accommodate the special needs of their child. In addition to possible physical adjustments to their home, there will have been a change of normal parental priorities; the needs of that child will have been paramount, even at the expense of the needs of other children in the family. Perhaps the parents may not have been able to go out, finding baby-sitters almost impossible to come by; it may affect the way food is prepared, or what foods are allowed; it could affect the way mealtimes are conducted, or the bedtime routines; account might need to be taken of the specialist toileting needs, how far the child can walk; special equipment might need to be carried everywhere. The list is endless. Every family makes its own myriad tiny and major adjustments, to cater for the all-day, all-night, everyday needs of their child. The overriding concern is that this intensity of care will not be possible in the school setting; parents fear that their child will suffer as a result.

The range of emotions and reactions that parents go through once they realise their child has problems is vast. Parents come to the analysis by starting from their role as a parent. It sounds obvious, but unless this is borne in mind, all the rest does not follow. When a professional deals with a special needs child, no matter how empathetic, kindly or caring that professional is, a certain detachment and objectivity underlie every interaction and observation. But parents feel responsible for their children, so whatever happens to the child is taken very personally by the parent. The parent bears the responsibility; the parent takes the blame. This propensity to shoulder blame leads to the most damaging emotion of all – guilt.

Guilt is one of the most fundamental and persistent reactions that parents – particularly mothers – experience. Once the habit of guilt has formed, it is a very difficult one to break. Everything becomes ‘their fault’; a real persecution complex can develop very easily. The slightest criticism or negative observation is taken as a personal criticism, for which blame must be acknowledged.

Fact: N had not bonded. Cause: it was my inadequacy as a mother – he didn’t fail to bond with me, I had not bonded with him.

Fact: N had not started talking. Cause: it must be my fault for not talking to him enough, not reading out loud to him enough.

Fact: N did not relate well to others. Cause: it must be because I had not mixed enough with mother and toddler groups, coffee mornings, playgroups.

Fact: N could not cope with change. Cause: clearly I had been too wedded to routine; or too prone to impulsive changes of routine.

Fact: N had fixated behaviour. Cause: well, that must be my fault for not providing a diversity of stimulation for him in his early months and years.

(Mrs K, regarding her son N, who has Asperger syndrome.)

When a parent meets a teacher, taking this child into the nursery or reception class, or even later on in the child’s schooling, the guilt can be resurrected all too easily. Table 1.1 illustrates just how readily the wrong interpretation can be placed on quite innocent comments by a parent prone to guilt and self-blame.

Table 1.1

Comment	Interpretation
‘He doesn’t do his homework.’	‘I am not helping him enough with his homework.’
‘She won’t ask for help.’	‘I’ve brought her up to be too independent.’
‘He doesn’t seem to know how to play with the other children.’	‘I should have taken him to more playgroups.’
‘She has not developed pre-reading skills.’	‘I should have spent more time reading with her.’
‘He’s very keen on Postman Pat, isn’t he?’	‘I let him watch too much television.’

Professionals should ask themselves just how these parents might misinterpret what they say. Not all parents will do so, but as the risk is quite high, particularly for parents whose children’s difficulties manifest themselves in bizarre, odd or inappropriate behaviour, it is important for teachers, psychologists and other professionals to consider re-wording what they say, or leading into their observations in a more circumspect way.

After guilt come bitterness and resentment: the inevitable ‘Why me?’ It’s not that the parents wish it on someone else, but rather an angry response to the grief they are going through. As a result of this bitterness, parents often become perceived as having a huge chip on their shoulder. Subsequently this can get in the way of meaningful discussions with the seemingly endless procession of professionals they have to deal with, who are totally objective about their child and his/her difficulties, and seem unable to comprehend why the parents appear to have such an ‘attitude problem’.

Denial can play a big role in the way parents react to their child’s disability. Even where the disability, learning difficulty or handicap is quite obvious, many parents still indulge in some form of denial. This is frequently experienced in the first few weeks and months after diagnosis or realisation. ‘There must be some mistake’, ‘They’ve got the medical records mixed up’, ‘He’ll grow out of it’, or ‘It’ll go away if we ignore it.’ Denial is often identified by professionals in both medical and educational fields, and is not confined to any particular type of special need. In many ways it can be seen in a negative light; the parent who remains in denial will never ‘come to terms’ with their child’s difficulties, and so will not be able to help the child progress.

On the other hand, there is also a positive benefit to denial. The parent who refuses to accept all the predicted limitations on their child is more likely to work very hard to help him or her overcome the difficulties. Stories abound of children for whom a consultant’s prognosis was very poor, but whose parents proudly display their child’s achievements. It is the fighting spirit that springs from a refusal to accept the poor prognosis that motivates many parents to work hard with their child to help them achieve their full potential. It is also this very fighting spirit, and fundamental belief in their child, that causes many parents to come into conflict with the education authorities and professionals. It is the parents’ belief that their child can do something, with enough support and encouragement, that is in conflict with the professional’s acceptance of the poor prognosis.

They said she’d never recover at all. She’d be unable to walk, control her body, see, talk. But look at her now. She is trying to stand: holding on to furniture. She can make about seven different sounds for different things. She was actually watching the television last night – got really upset when I changed the channel.

(Mrs J-T, whose daughter V suffered severe brain damage during an operation at the age of seven.)

In this sense, then, parents rarely ‘come to terms’ with their child’s difficulties; the question is, should they? ‘Coming to terms’ with it means to give in: to accept that this is the best they can expect; to believe that they should give up hope of progress. Too many parents have proved the professionals wrong in the past; too many parents are willing to try anything to maximise their child’s potential to achieve and succeed. It is anathema for them to ‘come to terms’ with the limitations presented to them.

Hope is a very positive emotion, most of the time. Hope is what keeps people going when all the evidence is against them – in any sphere of life. Hope is what keeps rescue teams searching the rubble for survivors after an earthquake; hope is what motivates doctors to keep trying to resuscitate a heart attack victim; hope is what keeps researchers looking for a cure for cancer. Hope is what keeps parents trying and fighting for the best possible provision for their child.

However, even hope can have its downside. Hope keeps many parents looking for a ‘cure’ for their child’s difficulties. It means parents coming to professionals time after time with yet another research article about a new teaching method, piece of equipment or device that will transform their child’s life. Some of these may be blind alleys; but many do turn out to be beneficial, and when a parent meets rebuttal and disbelief from the professionals, the rift between the two parties becomes wider.

Anger is an ever-present threat. Parents are angry with themselves for failing to provide a ‘normal’ life for their child; they are angry with the professionals and agencies they meet for failing to help them access all the appropriate support and provision for their child. It is often an unreasonable anger, directed at the people who really cannot change things, but just happen to be there. Thus school secretaries and clerks in education authorities take verbal abuse from parents when their head teachers or managers are not available to come to the phone, or school staff are threatened when an appointment is not forthcoming with the educational psychologist. The anger is born of the bitterness and frustration of the situation parents find themselves in. No one likes to feel helpless; and when parents are made to feel helpless to resolve their children’s difficulties, the anger can be overwhelming.

Many psychologists now accept that a parent of a handicapped child needs to grieve, just as if a loved one had died; but the day-to-day reality of coping with the child means that this grieving process is severely curtailed. They are supposed to be brave; they are supposed to love this child they did not ask for, forget the one they expected and hoped for. They are not allowed to resent their child, only resent the situation. Yet it is natural. When we expect a baby, we expect a normal baby, one whom Granny can bounce proudly on her knee, one who will play with toys in the toddler group, one who will make friends at school, who will progress through nursery, primary and secondary schools, hopefully to university, college, or at least to a useful occupation. Someone who sadly will grow up to be independent, leave home and start their own family. Mums buy the books and magazines that talk about pregnancy, labour and the newborn baby in glowing terms of normality. The shock is immeasurable once the parents realise that none of this applies any more, that to get information about how to look after their baby they must ask in whispers at the library enquiries section, or send off to some distant and remote charity for a booklist.

There is a need both to grieve for the child they did not have, and to come to love and accept the child they do have. These parents can and do love their special needs children; they just need time sometimes to turn that love into a practical, positive attitude.

All these emotions – and more – are experienced by parents throughout their child’s life, and not just at the point of diagnosis. It doesn’t only happen when the child’s disability is profound and diagnosed early. In addition to being aware of the emotional baggage parents bring with them to the school situation after years of coping with their special needs child, teachers, psychologists and others working in the education system need to be prepared to encounter these feelings when a child is identified as having some special educational needs after starting school.

Most of the children assessed at Stage Four are assessed after they have started school. All of the children on Stages One to Three will by definition already be at school. That means that many of the parents whose children have special needs will first hear the fact from a teacher, special needs coordinator or psychologist. These professionals may not come up with the diagnosis, but they may be the first to say to a parent, ‘We have some concern …’. No matter if the parents had already had that concern themselves, or even if they had initially expressed their worries to the teacher, it still remains a shock for them to hear a professional say it, or to confirm their fears. As parents they may suspect, and hope it is not true; once a professional confirms there is a need to be concerned, any pretence is over.

It does not have to be a serious special need to trigger these feelings and reactions. A slight delay in learning to write, a suggestion of a few extra sessions out of the classroom with another teacher ‘who knows how to help children catch up’, will be enough to start the negative spiral of denial, blame-throwing and anger.

One of the most provocative situations for parents is when the first hint that a child has any difficulties at all is a deterioration in the child’s behaviour. When collecting her child at the end of what she believes to be a normal school day, a mother is not prepared for the teacher calling her over ‘for a quick wor...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Table of Contents
• Dedication
• Foreword
• Introduction
• 1 Parental experience
• 2 Parents as partners
• 3 Partnership – a conceptual framework
• 4 School SEN policies
• 5 Stages One and Two – coping within school
• 6 Stage Three – involving others
• 7 Stage Four – statutory assessment
• 8 The Statement
• 9 Annual reviews
• 10 Complaints and appeals
• Appendix A Parental survey
• Appendix B Writing about your child – notes for parents
• Appendix C Useful contacts
• Bibliography
• Index