Monday, 25 October 2010

Diagnosis

"What's on the horizon"by Susie Mallett 24th October 2010

I think I must be getting old!

No, that is not a diagnosis, just a feeling that I have had over the past few weeks when, on two or three days, although I was up early enough, I decided to leave my bike at home. The reason, I told myself, was that the weather looked a bit nippy, but it was really because the busy past few weeks have left my limbs feeling tired.

Anyway, it is nice sometimes to go on the tram and the bus and to walk across the fields. That’s how I got to see that gorgeous moon last week!

I have also had time some days to sit in the café by the duck pond for breakfast, because I arrived too early for work. It was there that I found time to read my English newspaper. There is always something that catches my eye after first reading all of my favourite feature, the Nature Watch. On this occasion,I remember, this was all about garden spiders, these are particularly splendid with their glistening webs at this time of the year.

After the nature there was the art

First I spotted Arcimboldo, with his amazing fruity faces on show in Washington, USA, and then I read about Kitagawa Utamaro and his lovely drawings of women to be seen at the Ikon Gallery in Birmingham, England. The Ikon was a favourite haunt of mine as a post-grad. art-student, and both Utamaro and Arcimboldo amongst my favourites. I wished that I could have been beamed up to take a look at them both.

Then there was ADHD and the roots of the matter

As it was, I had to go to work. I was just about to pack up and walk off to begin my stroke group when something about ADHD, attention-deficit hyperactivity disorder, caught my eye.

I have worked with a group with this disorder so I decided to spend a minute more to see what it said. You can read the full article from the Guardian at:

http://www.guardian.co.uk/commentisfree/2010/sep/30/attention-deficit-disorder-genetic-roots

In my Weekly Guardian was a shortened version, but basically telling us the same, that a Professor Thapur from Cardiff is claiming in the Lancet not that it can be proven, that one can say with confidence that the roots of this "disorder "are genetic.

I got the feeling that the author of the article, Johnjoe McFadden is telling ua with his intitial statement, just as Cordelia Fine did a few weeks ago, to be aware of Blobology:

http://www.susie-mallett.org/2010/10/blobology.html

Mcfaddon wrote:

“ADHD's roots are complex

To claim attention-deficit hyperactivity disorder is genetic is to dangerously simplify the nature of the condition.”

I am not sure what difference it makes knowing more about the roots of the matter when dealing with the clients and their symptoms, but it got me wondering about diagnosis and what difference it makes to clients, parents and carers, and professionals dealing with the clients, whether a diagnosis has been made or not.

Do other conductors discuss this with their clients?

I do, quite a lot, with adult clients and with the parents of children.

Is a having a diagnosis always good?

I am not sure what I think about having a “diagnosis”. Sometimes good sometimes bad: for some people good and for others bad.

I let a diagnosis influence my practise as little as possible, apart from, of course, in relationship to the health and safety of the client.

I have been in many situations when colleagues and other professionals have been very influenced by the diagnosis, especially when this is autistic or ADHD, and have let it affect their behaviour towards the client immensely.

Often the diagnosis “autistic" is taken as a label for certain behaviours eo which some professionals then say "No, this is not our in our field of practice", refusing to have such clients in their groups or individual sessions.

As a conductor, art therapist and pedagogue, I work out a programme for my clients independently of the diagnosis, but dependent on their needs at the time. I have worked with ADHD groups and with autistic clients. Yes, they do have a diagnosis but this is not what I am looking at, I am looking at what are the needs and wishes of my clients, and what I can offer them.

Back to the importance of a diagnosis

I am hoping that I will get some people writing in with comments about their own experiences on this subject. Although it is a something that I have talked to my clients about a great deal I am sure there is a lot more to say on the matter, especially by clients, the adults and the children, and the parents and the carers themselves.

Many adults with multiple sclerosis, adults with Parkinson’s disease and also adults who have suffered a stroke, tell me that on the day that they are given a diagnosis, when they are told what is wrong, why their bodies are not behaving in the way they are used to, one of the first feelings that they have is of relief: relief of knowing that they are not imagining it all and that there is a name to the problems that they have.

This relief is tsoon replaced by all the fears and worries about the future. Most of the people I speak to say that, despite the fact that after being diagnosed they can read up on all the possibilities of what is to come in their futures, some of which can cause depression and angst, they still believe that it is better to be in the know.

Psychologically it is really important for them to have this knowledge, they can prepare for he future, discuss plans with family members, and of course in some cases it is very important so that medicine can be prescribed to ease and even slow the progress of the symptoms.

The clients often say that, when they know what is wrong, when this thing that has been happening to them has a name, then feel that they can do something for themselves. The feel in control again. They say they can begin a search for ways to ease their symptoms, they can begin to organise a way of life that suits them. Some of them discover at this stage, and some much later, a conductive group and lifestyle.

They then describe the time when symptoms are there but they do not know why, as a time when their lives are “put on hold”, while they trail from one doctor to the next having tests and awaiting results.

There are practical things to consider too

When someone is constantly away from work with symptoms that remain undiagnosed this can cause great tension in the workplace. With a diagnosis, steps can be taken to work reduced hours, even to take early retirement or sick leave. The illness fits into a compartment that can be dealt with by the health insurance companies and the employers.

When I started to write this I purposely included stroke in the list of adults waiting for a diagnosis. You may say that a stroke happens, the diagnosis is immediate. Yes, it usually is but that does not mean that the client gets to hear about the diagnosis immediately. I have heard many a sad story about stroke victims who have not known for weeks what has happened to them. They have not understood, because of various problems in communicating, what has happened to turn their world up-side-down.

One of my clients told me that, when she was well enough to sit in a wheel chair and be pushed to a different part of the hospital for treatment, she was given her papers to hold on her lap. It was while waiting to get into the lift that she read that her diagnosis was a stroke.

She could not speak, so she could not ask. No one had thought to sit beside her and explain to her what had happened and what would happen in the future, and try to answer any unspoken questions. She could read and she could understand all that was said to her, but for many months she could not utter a word that was understandable to anyone but herself. This client spent many days without a diagnosis in a state of fear and bewilderment. She is sure that, had she known, it would have had a very positive effect on the quality of her immediate recovery.

Parents of children

Parents also tell us that at the moment the diagnosis was given to them they felt a sense of relief .

Often they say how important it is to have a name for an illness or a disease or condition because, although they know something is not right in the world of their child, often the professionals do not believe them.

A diagnosis gives these parents their right to be right.

I have also heard it said that, once parents of childten with cerebral palsy receive a diagnosis from a doctor, and they go on to ask what the next step forward is, then all too often they come up against a brick wall. Often there is a lack of ready advice, a lack of knowledge maybe, and the parents are all too often left on their own. Sometimes they have an offer of physiotherapy, sometimes they are left alone with nothing but the World Wide Web to surf for information.

They must decide alone and choose like any other parent what they want for their child. But they are not like any other parent, as they have a child with a diagnosis. This means their child has "special needs" and does not, according to the social services and educational systems, fit into the system that other children, those with no diagnosis fit into. The choice that other families have is closed to them.

So in the case of parents of disaled children, yes they also welcome the diagnosis that they receive for their child but they would also welcome some stepping stones and guidelines showing them where they could move on to after the diagnosis has been given. The majority of parents that we meet in conductive environments are the parents who were dissatisfied with early help. That is what set them off on a search for something that they felt was more appropriate for bringing up of their children. I do not really have a true cross section of parents to ask, as we do not see the ones who are happy with the provision that they have been given.

As Andrew Sutton wrote onn his blog last week, some parents say that, when a child with a motor disorder is born, there is a removal of hope, and often it is replaced by despair. Some hope may return when the family receives a name for the child's condition or illness. With a diagnosis they think that they have made a step on a new road, not to recovery but to finding a means to live life with their child. Soon, some parents say, that small amount of hope is snatched away, soon after it has returned, when they discover that provision for their child is inadequate or beyond them because of prohibitive costs. Hope can reappear once more when the family discovers conductive upbringing.

Having a diagnosis can also be prohibitive when it comes to schooling. Often the people dishing out school places do not look further than the words on a paper. A child with cerebral palsy, ADHD or autism, or any other debilitating condition, may miss out on an appropriate schooling because of one mark made on a piece of paper. And then the fight begins.

Comments please

These are just a few of the thoughts sparked off while reading the newspaper one chilly, autumn morning. I would really welcome some comments on this one, from clients conductors providers of services, anyone who has something to say about this.

Notes

Susie Mallett on Conductor-Blobology -

http://www.susie-mallett.org/2010/10/blobology.html

The Guardian, ADHD's roots are complex

http://www.guardian.co.uk/commentisfree/2010/sep/30/attention-deficit-disorder-genetic-roots

Johnjoe McFadden -

A science author and professor of molecular genetics at the University of Surrey

Cordelia Fine -

http://www.cordeliafine.com/

Andrew Sutton - HOPE http://www.conductive-world.info/2010/10/hope.html

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