24/04/2011 by lizit.

Following on from the Identity memo 1, I want to explore another area which is important to my research and which also has a long root in my life, namely my interest in disability and related areas.

I suppose my first conscious interest in disability was in 1966, when as a 16 year old I went on a working holiday to a Leonard Cheshire Home and met people who had quite severe impairments for the first time. At the time, I can remember being impressed by the ethos of the establishment - the concept of family and not referring to disabled people as residents or patients. It made enough of an impression on me, that I returned the following year and began to look at possible career options that might involve working with disabled people.

However, my awareness of health and illness goes much further back than that. Before her marriage, my mother had been a nurse and she retained an active interest in her profession, acting as secretary to the local branch of the Royal College of Nursing. She had done both mental and general nurse training, but her interest was in mental health and she would speak of her experiences and about how difficult it had been to enter her chosen profession - she encountered a lot of opposition from her family because of the low status nurses were perceived as having in the early 1930s when she commenced her training.

I would guess that my mother’s stories had quite a lot to do with me choosing to join the Junior Red Cross and undertake basic training in first aid, home nursing and child care.

I can’t claim that I thought much about disability again until about 1980 when I was working for a local authority as voluntary organisations liaison officer. I was involved in the planning of our response to 1981 - International Year of Disabled People - which led to two specific projects - developing an access guide for the borough together with the head OT and involvement in establishing a local disability association. I also got involved in setting up a parent support group. At a personal level, the spin off from this was taking a postgraduate Masters degree and doing a research project on local disability associations and the implications of them being run by and for disabled people or by able-bodied for disabled. This linked to the thinking of the Wolfenden Report on the future of voluntary organisations and the role of intermediary bodies and to the changes within the disability movement more generally that recognised that disability was not an obstacle to being able to run organisations, engage in social and political action, etc. I can remember being shocked by some of the attitudes I heard expressed by people then responsible for the voluntary/charity organisations and also being impressed by what I saw disabled people doing.

My next career move was to leading a multi-disciplinary social services team with a focus on disability and older people. As described in identity memo 1, a key element of my work there was enabling our ‘clients’ to have as much control as possible over the services made available to them.

Moves followed into voluntary organisation management and motherhood. It was as my son began to develop that disability became a much more personal concern. It was very clear that my son was exhibiting different behaviour from other children of his age, and though I put some of this down to the effect of living in Germany and being between cultures, concern was also expressed by the Kindergarten he attended. I was subjected to a very difficult discussion with the Kindergarten staff when I was effectively told that it was probable my son would never live independently and would probably not be able to attend a normal school. To say this was done clumsily and without warning is an understatement. The fact that the conversation took place in German made it all the more difficult - was I really understanding what I was being told.

Following initial assessments with a German paediatrician, we learned we were returning to the UK. My hope was that my son’s behaviour would settle once he no longer had to cope with two languages and different cultural expectations. The reality was that very soon his school were making referrals to the school nurse and we ended up with CAMHS and the start of the long journey to finding out what lay behind my son’s differences and getting appropriate support for him. That journey also led me, together with others, to set up a parent support group and convinced me that it was essential for parents to be adequately informed and supported so that they could obtain the support their children not only needed, but had a right to.

I could unpick those personal experiences a great deal more - the attitudes of the different professionals I encountered, the lack of knowledge some professionals had of the support infrastructures, the journey to getting a statement for a very able and intelligent child who just was not coping in school, the encounters with mental health services and the failures of services to address needs appropriately. Elsewhere I have documented the roller coaster of emotions I experienced and the details of that journey.

Now I am able to step back a little. My son is now an adult and is doing very well. But I am still actively involved in parent support groups and my personal experiences are very much the driver for my research. Sometimes I feel I am too close to what I am researching and too influenced by my own experience. At other times, I recognise that even when going through the worst of times with my son, I was operating both as parent and professional and maintaining a level of professionalism and objectivity which I did not feel.

A further aspect of disability is now impinging on my life and consciousness. My own health and fitness has deteriorated, to some extent because of my failure to care for myself appropriately, and I am having to recognise there are things I cannot do that I might want to do, but my energy levels are inadequate.

So throughout my life, I haven’t been very distant from issues of health, illness, mental health, disability, and SEN.

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22/12/2010 by lizit.

I’m working through my interview data at the moment and a phrase struck me. The participant was talking about parents of children on the autistic spectrum, and she said: “… or you are deemed to be a very vocal parent who’s only got what they’ve got because you’ve been so pushy about it and you’ve fought the legal system.”

That got me thinking about something that occurred to me quite forcibly a few months during a writing course at university. The thought was where was the child and the child’s voice in all this. Sometimes it can be presented as though parents are fighting the education system, the health system, or whatever because they want to. Yet surely the parents only find themselves in this fight scenario because of the needs of their child. To have a child who is unhappy and can’t cope with the ‘normal’ stuff most children are believed to thrive on is heartbreaking for most parents. Is it that surprising that parents find a voice and will “move heaven and earth” (as it said in the brochure for a school my son once attended) to get their child the help they need? The parents are not trying to achieve a victory for themselves, but to get their child’s needs met - or are they?

But what does the child actually want? How much of a voice do they have in the process of securing appropriate educational provision? I’m not going to attempt to answer that here, but what I do want to recognise is how important it is not to lose sight of the child or young person in everything else which may be going on.

Posted in parenting, struggle, Aspergers/HFA, ASD | Print | 2 Comments »

22/11/2010 by lizit.

Last Thursday I was sitting, talking to a woman at the drop-in centre I facilitate for parents with children with SENs. Her son, aged 14 and currently out of school, was playing with duplo on the floor nearby. He hasn’t been labelled as a school refuser, but hasn’t been in school this term, and previously he was refusing to co-operate with teachers or absconding from the school site. He has diagnoses of Aspergers and Dyslexia and currently has a reading age of 6 according to the psychological assessment done recently as part of his statutory assessment of SEN.

I first met this woman, I’ll call her Pam, a couple of months ago. She arrived at the drop-in very concerned about her son and adamant that he was not going to go to the school she understood the local authority were going to recommend for him. She knew he was being assessed for a statement, but she had very little understanding of the process, or what actions she could take to help him get an appropriate placement. Over the weeks, we have seen Pam become less angry and defensive and more prepared to listen to suggestions as to how she can build a case for placement at a school she thinks would be appropriate for her son. She has visited a number of schools and seen the range of options - and also found a school which her son would be happy to attend.

On Thursday, Pam arrived at the drop-in with the proposed statement. It could have been better written, but she had spoken to the SENCO at her son’s school and they had agreed it was probably OK. She had also spoken to the two schools, she did not want her son to attend, but she felt the local authority would be recommending. One had been very clear that it was not a good idea to admit a new pupil to an established group of students with special needs in the middle of Year 9. The other was clear that they could not offer the boy anything more than his current school had been able to. Both schools agreed to email the local authority saying they would not be an appropriate placement. She had also obtained a letter from her son’s psychiatrist to say that he needed to be in a specialist setting with staff who understood his conditions and his needs.

I suggested to Pam that she phone the local authority to check if they had received the emails. They said they had had no communication, but there was a panel meeting that afternoon when the boy’s placement would be discussed.

There was little else we could practically do, but Pam agreed to email me on Friday when she heard the results of the panel meeting. We also agreed that it would be appropriate for her to ask for a meeting to discuss school placement, if the local authority were still adamant about which school the boy should attend. It was while talking about the possible meeting, that Pam showed her concern. “I’m only a parent. They are all officials and I don’t know how to talk to them.” Pam had articulated the very reason why the drop-in had been set up. As another parent, and as somebody who has been through the whole SEN process, I understand how she feels and how much she needs support, and how much she feels wrong decisions are being made for her son. I want to step in and accompany her to meetings and tell the local authority how ridiculous they are being. At the same time, I want to enable and equip her to make her own case to the officials and realise that she can do it and that she is far more than “only a parent”, but a woman who can use newly developing skills to present her son’s needs.

In the end, I assisted her to write a letter - she is perfectly capable of writing letters, but needed the right turn of phrase to address the officials. At least she is using email now - when I asked her to email something to me a couple of weeks ago, she looked terrified. On Friday, Pam emailed me to say the local authority are still wanting to send her son to the school she regards as totally inappropriate. She had asked for a meeting and was waiting to hear when that might be.Next Thursday, I will see her again and we will talk about her preparation for the meeting and who she might take with her, either to help her to present her case or simply to take notes and support her. How much more than “only a parent” Pam is having to be as she learns knew skills and sets about supporting her son to get the education he needs and deserves.

Posted in SEN, parenting, struggle, Aspergers/HFA, education, learning | Print | No Comments »