Parents' page

A mother's letter

My son has been seen by Nancy Williams since May 2003. At that time my son was on the verge of exclusion from school. The school was telephoning me at least two to three times a week. He had been suspended at least three times and excluded at least twice.

Nancy has been an invaluable source of help, reassurance and support for my son and my whole family. I cannot support her enough. She is truly one in a million and I don't think my son would still be in school without her help and support.

Nancy still supports my son, who I have finally through tribunal (which Nancy was a true help with) got statemented. It has been a long and hard battle, but finally we feel our son is settling into school and is starting to enjoy it rather than see it as an institution to escape from.

My heartfelt thanks go to Nancy and her team for all the help and support they are giving and have given to us. The ADHD Studio is a very valuable and restful place for the children to come and learn to understand and find themselves hidden beneath all that anger and frustration that builds up until explosion. Not only does Nancy help parents and children understand, but she has also implemented help in schools with great results. Thank you from the bottom of our hearts. (Jenny)


The school/parent relationship

This is an article I have simplified that parents may find useful when dealing with school meetings and intervention – Nancy

Parents and teachers in partnership

Although parents are individuals, parents of children with special educational needs do sometimes have experiences in common and often have concerns in common. In trying to build a partnership, professionals should avoid generalisations and wrong assumptions so that parents are not made to feel that they are expected to fit a stereotype.

Emotional barriers

Parents are emotionally involved with their children in a way that professionals, however caring, are not. This is the one great difference between parents and teachers and one that needs to be acknowledged at the outset and kept in mind throughout the partnership.

For parents of children with special needs, there is often no clear path, expectations and assumptions have to be constantly revised, there is shock, bewilderment, isolation and sadness and anger and at the same time there is often pressure (self imposed or from outside) to take action, to make decisions and to "deal with" the situation.

The strong and complex emotions described above can lead to practical problems and create extra hurdles to be jumped on the way to achieving worthwhile partnership

Isolation

Parents of children with special needs can experience a sense of isolation in many different forms, some obvious, some subtle, some physical and some less concrete.

Mothers and fathers

Mothers and fathers do not usually have the same experience of or with their child. One may see their child with his/her peer group much more frequently and be able to make comparisons about development and progress, one parent may attend many more clinic appointments or assessments with the child and hear the advice and opinion of the professionals concerned at first hand. The other may only received relayed information and sees written reports but not the assessments that led to those reports. Parents may have differing expectations and hopes for their child. The shock of a diagnosis or realisation that something is wrong may lead to a period of denial or depression and an inability to discuss the situation with someone else who is also in a state of grief or shock. There may be a sense of guilt or shame which prevents open communication. As mentioned elsewhere, parents may work towards an understanding and acceptance of their child's special need at different rates and whereas it is acceptable for professionals to differ in their professional view of a child's problems, it is generally expected that parents will be in agreement. This can put a great strain on parents, firstly because they feel there is an expectation that they will agree, secondly, because they may find it hard to come to any decision when one of them is not in favour and thirdly, because they may feel isolated and unsupported by the person they expect to be closest to.

For the parents of a child with special needs, the wider family may become yet another problem rather than the supportive group they need. Further removed from the child that its parents, relatives may not see or may not wish to see the reality of the problems. Attempts to say the "right thing", for example, "she'll grow out of it" or "you were the same at his age", may seem to be denials of the difficulties.

Friends

There are no easy answers or lists of rules of behaviour for relatives and friends, but is probably fair to say that a clumsy expression of concern or an awkwardly phrased enquiry about a child's progress is preferable to no mention of the problem at all. Relatives and friends cannot be expected to know how parents are feeling, but they can make the effort to ask. They may not know the best way to help, but they can still offer to help.

However overwhelming the problems may sometimes seem, parents still want to be seen as people first. Parents frequently stress their wish to be treated as a "normal" family. This does not mean they continually wish away the child's needs, but it may mean that they want to be recognised as individuals with personalities, interests, likes and dislikes that are not all defined by the special needs of their child or their role as its parents.

Recommendations for parent/teacher partnerships

The primary school playground at the beginning and end of the day can be a competitive arena, a minefield of sensitivities and a very lonely place for a parent of a child with special needs.

In mainstream schools, access to support from other parents of children with special needs may seem even more difficult. Schools do not tend to advertise their systems for meeting special needs in the same way as they display their successes in test results and league tables. There can seem to be a lack of communication when it comes to discussing special needs provision which means that, at best, information is distributed on a "need to know" basis to those parents whose children have been identified as having special needs. Parents may have no idea of how to access the system if they are worried about their child's progress.

Schools, which describe their special needs, provision at the outset to all parents and who offer follow-up information and discussion to parents of children with special needs as a group as well as individually, can help to decrease the sense of isolation felt by parents.

Understanding the system

As suggested above, it is sometimes a lack of information about what is happening or what should be happening, that creates a barrier to partnership. The Code of Practice provides a detailed framework but is not easy reading at first sight and is not easily assimilated.

It has been said that in order to cope with the special needs system, you need to be the sort of person who keeps all their receipts. Parents who find paperwork difficult to dealt with at the best of times, may feel overwhelmed, parents who have no problems with day-to-day paperwork may feel overwhelmed when the papers relate to their child and its problems.

Unreasonable expectations from the school

Now that your child has been moved to Stage Two that means you must do extra spelling practice with him at home... (even though it is almost impossible to get him to complete his homework, eat his tea, stop hitting his little brother, come home before midnight).

We know you parents are the experts so you tell us what would be best for him... (even though you have already tried the contradictory advice of every expert you have met and the magic solution has not appeared).

Moses and Croll (1985) note that teachers have a number of explanations of children's difficulties which place a heavy emphasis on the social circumstances and parental background but fail to recognise the role that the school or teaching may play.

Parents may feel that they do not have time or the skills to help their child at home. They may also find it difficult to get into school to attend meetings because of childcare problems or working patterns.

Having a child with any special educational need may cause extra stress and worry as well as imposing additional responsibilities on the parent.

A newly qualified teacher on an autism course complained that parental involvement was all well and good but what if the parent wouldn't do what she was told? The teacher had set targets for the child to achieve at home with her parent but they were rarely carried out. When asked about home circumstances, the teacher reported that the parent had two other pre-school children as well as her eldest child with autism and was a single parent.

That the parent was coping wasn't recognised as a success in itself, and without support from the community it was not realistic to set those targets.

Despair

Parents can sometimes reach a stage where they feel there is no point discussing things any more. They may be tired of continually explaining and describing their child's difficulties (usually from conception onwards) and lose faith in the stream of professionals who listen, take notes and move on.

Fear

Parents may fear the consequences of acknowledging their worries. They may feel they are seen as a nuisance; they may feel their comments will be seen as a criticism of the school; they may fear that their child will be moved to a different school or ostracised. Their greatest fear is of their child being expelled when there are so few resources available.

Exhaustion

It is often physically and almost always mentally exhausting to look after a child with special needs. Parents may never get a proper night's sleep, they may never have time to themselves, they may feel they are expected to do more because their child needs them more. There is also a significant effect on siblings due to all the demands of the special child. There may not be a network of friends from their child's peer group to create a social life for the child and a consequent break for the parents. There may be no time or energy left to sit back and look at the whole picture and think calmly about what the next steps should be.

Labels

Parents who are worried about their children are keen, if not desperate, to find an explanation. Periodically the media produce stories and articles about different syndromes and conditions which have an educational effect, for example, dyslexia, Asperger's syndrome, ME or ADD/ADHD. Is it surprising that parents will want to investigate these labels as possible explanations?

These labels can be a bit sticky, so that both professionals and parents can get stuck in their thinking.

The child can become stereotyped by the label and the child's individual needs are overtaken by the received wisdom pertaining to the condition – that he is not being lazy or naughty or just a "bit disorganised". The label can help to make the school reassess or take seriously the concerns of the parent and may help in obtaining resources and support.

Meetings

For parents, almost any meeting about their child feels like a crisis meeting. Whenever their child's difficulties are discussed, memories of the initial (gradual or sudden) realisation of the child's difficulty may be aroused and the implications for the child's future will be brought to mind. One of the greatest worries for parents is what will happen when their child leaves school or is suspended or expelled prematurely.

Parents will deal with their emotions in a variety of ways, but they cannot be expected to be unaffected by them. Busting into tears, losing one's temper or being super-efficient may all be signs of the same underlying sadness or confusion. However, it would be dangerous to draw conclusions from these outward expressions of emotion. They do not mean that the parent cannot cope, is being unrealistic in their expectations or has failed to come to terms with their child's problems. Because a meeting is stressful for a parent, it does not mean that they would prefer not have a meeting. Part of the reason for the high level of stress experienced by parents may be that the meeting is important.

People do not find strong emotions easy to deal with. Parents may avoid asking questions they want to ask or discussing aspects of their child they would like to discuss because they are afraid of being embarrassed by breaking down or becoming angry; teachers may worry about upsetting parents and feel that they have caused the emotional upset by the way they have talked about the child.

Meetings that are calm and business-like, that are unhurried, that have a clear agenda where appropriate, that are seen as part of a continuing pattern of further meetings and not as one-off decision times and where the child's abilities and difficulties are discussed honestly and openly but positively, should be able to achieve what they set out to achieve.

Extracted from the book Parent-Teacher Partnership by Mike Blamires, Chris Robertson and Joanna Blamires (David Fulton Publishers, London, 1997). ISBN 1-85346-470-6.
Adapted by Nancy Williams, ADHD therapist.

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The case for early intervention

PACE report

Our "Preventative Action is Cost-Effective" (PACE) report presents the economic and social arguments for providing early intervention and preventative services for children and young people with ADHD, high functioning autism and related learning disabilities in Surrey.

The Studio's multi-systemic approach has been shown to achieve positive outcomes in such cases and, as this report shows, it has the expertise to fill this gap in special needs provision.

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Family Voice

Family Voice Surrey

Family Voice Surrey (FVS) is the official Parent Carer Forum for Surrey, working with key decision-makers in education, health and social care to represent the families of children and young people with additional needs. You can read more about it on its website.

We urge you to sign up to be represented by FVS.