Tag Archives: Creativity

Judged Response

One afternoon, whilst speaking to my closest friend Errin Yesilkaya, we wanted to do something. Just something. An exhibition sprung to mind, then I must have stammered shortly after this revelation. There we have it. Judged Response, an exhibition which places explicit focus on stammering, celebrating the differences of those people who stammer, demonstrating these differences and challenges through the medium of art, which has no boundaries, as you are not bound by what you can utter. The visual nature of the artistic medium allows for freedom of expression which people who stammer may struggle with otherwise. This was our idea and vision.

Errin and I brought Shahram Saadat on board as a person who stammers. After many meetings, we decided on our idea and proposed this to Arts SU, the Student Union of University of the Arts London where we all study BA (Hons) Photography at London College of Communication (LCC). We were successful in gaining an exhibition space at LCC, thus then our creation and curation of the exhibition began.

Our motivation for this stammering and art fusion was primarily the fact that stammering has not as such been greatly presented in an artistic context. This exhibition would be an accessible way for anyone, someone who stammers, someone who has knowledge of stammering, or ideally, no knowledge at all of the complexities of stammering to engage with the day-to-day struggle of speech. Ideally, this exhibition would be as public as possible, detached from the white space of the gallery and firmly placed within the public domain for maximum impact and a realisation from the public that stammering is a challenge and not something to be mimicked, laughed at or perceived as a weakness.

Audience and raising awareness was a key reason for us curating an exhibition of this nature. Stammering is something which is talked about, however, while it is talked about, it is not an easy subject to be public about due to the sensitivities of the subject matter, the differing views and effects it has on people who stammer, so any kind of public exposure of stammering has to be carefully, ethically thought through. Art, to some extent, has no limits, it is the artist’s personal perspective, not those of an organisation, so it has the potential to accurately represent (particularly if the artist stammers) the insecurities, strengths, niggles, that stammering brings up.

The three of us each exhibited a work of our own (I was the odd one out, presenting two), all communicating varying themes and aspects of the nature of stammering. Errin’s piece, £137.80, speaks for the way in which our consumerist culture may view people who identify themselves as having a disability are viewed within society. Shahram’s piece, Appropriated Reactions, focuses in on the facial expressions a person who stammers may experience when speaking with someone. My works, Subtitled Liberation and We Judge Because We Don’t Understand, through text in a physical and video sense, provides a liberating, anonymous, fluent opportunity for multiple people who stammer to express their true emotions about the struggle of having a stammer.

The Private View was extremely well attended by people who stammer, friends of those who stammer and people with no connection to stammering at all. Pertinent and important discussions were also held over an exciting, engaging Q&A session with the exhibitors plus Claire Norman, Founder of the Stammerers Through University Campaign (www.stuc-uk.org) and Tim Fell, Chair, British Stammering Association. Overwhelmingly, the most common phrase uttered to me during the night was ‘this is the start of something’ or similarly ‘you’re onto something’. Of which, I agreed with everyone who said this to me. This is the mission I’m on, to show the connection between stammering and art, through a number of mediums, to ultimately affect public opinion.

We are keen, as a collective, to develop a more ambitious exhibition, extending on the ideas raised in Judged Response, perhaps being more interactive and immersive. Watch this space.

 

Rory Sheridan

e) photo@rorysheridan.co.uk
w) www.rorysheridan.co.uk

Talking Mats in Practice

Following on from my last blog introducing my journey with Talking Mats (TMs), I have described below two examples of my use of TMs in practice. I specialise in working with people who have had sudden onset brain disorders, such as strokes, brain injuries and other progressive brain disorders, such as Parkinson’s disease and dementia. I work in a rehabilitation hospital where we provide a service to the elderly and to a neurological rehabilitation unit.

Talking Mats has been an invaluable picture communication tool to facilitate communication with people who present with cognitive (thinking, memory) and/or communication (talking) skills as described in the examples below:

The first example of TMs shows how it can be used to get to know someone and find out what their hobbies and interests are.

This is Bob’s Talking Mat:
Topic: Indoors activities – likes and dislikes
Bob (*name changed) had a large stroke that affected the left side of his brain. This affected his thinking and talking skills. It also affected his walking and he was using a wheelchair in hospital. Bob found it difficult to engage in conversation. The Physiotherapist and I thought that TMs may be a way to help Bob tell us about himself. We also wanted to see how he responded to using TMs to see if this would help him to think about some goals.

We started with symbols that Bob would find easiest to understand, so we explored Bob’s hobbies. The topic we picked was ‘indoor hobbies’ – this was placed at the bottom of the mat. We asked Bob how he felt about different indoor hobbies encouraging Bob to place the pictures on the mat. Using a visual scale of like/so-so/dislike at the top of the mat, Bob told us he liked music, TV, snacks, and card games. He disliked reading, arts and crafts. He felt ‘so-so’ about pets, computers, chatting, cleaning, cooking, photographs, and relaxing. Using the information in his ‘All about me’ book filled out by his family and talking to Bob more about his likes, in particular music and TV, I was able to incorporate his music choices in our music group. Bob became very vocal in the music group, happily singing away to his favourite band! Bob enjoyed TMs and it was used successfully to help Bob set his goals. The picture symbols also helped Bob’s thinking, understanding and talking. The visual framework of his hobbies allowed him time to think, process and respond.

This is Ruby’s Talking Mat:
Topic: Management of domestic life
 Ruby (*name changed), a 92 year old, was admitted to hospital with dementia following a fall resulting in a fractured hip. She lived on her own with some help from carers. As a result of her dementia, her thinking and memory were affected. The dementia also caused her to muddle her words and she would talk about her pet ‘penguin’ meaning her ‘parrot’.

The hospital team were worried that Ruby may not manage at home on discharge from hospital and that she may not fully understand the risks if she chose to go home. The Occupational Therapist and I used TMs with Ruby to look at how she felt about managing her self-care and domestic life at home. Ruby was engaged in TMs, but it became apparent that her insight and awareness was impaired. For example, Ruby forgot she had carers to visit her and that her meals were prepared for her by the carers. The hospital team were also concerned about Ruby during the night as she needed help in the hospital to get to the toilet and she would not be able to do this without help at home.

The Social Worker and I worked together with Ruby using TMs to look at her capacity to make an informed choice about her discharge destination. According to the Mental Capacity Act, “individuals must be given help to make a decision themselves. This might include, for example, providing the person with information in a format that is easier for them to understand”.

We carried out TMs as shown in the picture above. The topic, ‘domestic life’, was placed at the bottom of the mat. The top scale at the top of the mat, ‘easy’ was placed in the left hand corner; ‘so-so’ in the middle and ‘difficult’ in the top right hand corner. Ruby felt that cooking, paying her bills, cleaning, shopping, laundry and money were difficult. She felt unsure about being able to make a snack and there was nothing she found easy. When we asked her if she wanted to add anything else to her mat, she said that she was worried about ‘somebody ringing the bell’; ‘falling over’; night-time – ‘being alone’.

The Social Worker and I carried out a ‘sub-mat’ to explore with Ruby other options regarding discharge from hospital. It was felt, given the level of her care needs in hospital, that a nursing home might be the safest option.

Sub-mat exploring discharge destination options including nursing home:
Topic: Nursing home positives and negatives
 The topic placed at the bottom of the mat was ‘nursing home’. The symbol options on the previous mat that Ruby felt were ‘difficult’ were used for the sub-mat. The top scale for this mat was ‘like’, in the top left hand corner, ‘so-so’ placed in the top middle and ‘dislike’ in the top right hand corner of the mat.

Ruby put the ‘eating’ symbol under ‘like’ as it meant to her that her meals would be provided and that she would be eating with others at mealtimes if she chose to. She liked that her laundry would be done for her, and she liked the fact that she would not have to worry about the shopping, cleaning and cooking, as this would all be taken care of by the nursing home. We discussed the concerns that she had about people ringing the bell at home and that she would not be alone at night time.

We gave Ruby a copy of her TM so that she could think about what we had discussed together. A few days later, Ruby called over the SLT and Social Worker on separate occasions when sitting in the ward dining room and said she was keen to ‘get going and look at nursing homes’. I felt that the visual framework of TMs had helped support her thinking, memory and understanding. It gave Ruby ‘thinking space’ to add her concerns of ‘someone ringing the bell’, and ‘being alone’ at night. The mats showed Ruby’s problem solving, such as her difficulties at home versus the benefits of a nursing home. The Social Worker and I felt that Ruby had capacity to make an informed decision regarding where she wanted to be discharged to from hospital. I am pleased to say that Ruby was very happily ensconced in a nursing home chosen by herself and her family.

Leila Paxton

For more information about this blog and foundation training (TMs beginners) please contact me via:
Email: leilapaxton@hotmail.com
Twitter: @leilapaxton

 

 

 

Supervision keeps us awake!

I have been fortunate in my career to have some really excellent supervision, but all too often I hear from colleagues that the service they work in does not offer quality supervision. I regularly hear that for many it becomes a tick box managerial function, concentrating more on the doing of therapy rather than the being or becoming a therapist. Yes, we need to have time to check on whether we are using the right procedures, we need affirmation that we are abiding by the right policies, but this should not form the main focus of supervision sessions. I have found it helpful when supervising colleagues to devote some time in each session to the doing, i.e. the day-to-day activities of the job, but to ensure that there is enough time to talk about the being and becoming, i.e. to explore our emotional and psychological responses to our work and how the work is affecting us. Geller in Fourie (2011) rightly says that “attention to the affective and intersubjective aspects of clinical relationships has been neglected in speech-language pathology” (p. 197).

We encourage students at the Universities at Medway programme to use reflection from day 1 to explore their feelings about their experiences in becoming a therapist. We need time to explore our emotional responses and reflective writing offers a chance to do this. In professional contexts we could learn so much from colleagues in psychology about issues related to transference and countertransference. One particularly useful session I recall was where I was encouraged by an experienced supervisor to unpack the feelings that had been aroused by working with a family where there were bereavement issues, which in turn had awoken emotional responses in myself. This allowed me a safe space to reflect on my role with this family and to make me more aware of my own responses.

Nicky Weld’s book on transformative supervision for the helping professions has been very influential for me. She points to a fear of people having emotion-based conversations in supervision for fear of not being able to manage what comes forward. This lack of acknowledgement of our emotional responses can ultimately lead to a risk of burnout. In the context of ever-reducing funding, I would urge colleagues to ensure that quality supervision is provided and that time is made to attend to creating, through supervision, a safe, protected environment for learning, personal and professional development without which we will stop growing. Ryan (2004) says of supervision: “It wakes us up to what we are doing. When we are alive to what we are doing we wake up to what is, instead of falling asleep in the comfort stories of our clinical routines” (p.44). Let us stay awake and not fall asleep on the job by falling back into familiar routines. Supervision can help us unpack received wisdom.

photo-feb-2016

 

Jane Stokes
Senior Lecturer, Speech and Language Therapy
Faculty of Education and Health
University of Greenwich

 

 

 

 

See further reading:

Geller E. (2011) Using oneself as a vehicle for change in relational and reflective practice. in R. Fourie (ed) Therapeutic Process for Communication Disorders. Hove: Psychology Press, 9.195-212.

Ryan S. (2004) Vital Practice. Portland UK: Sea Change Publications

Weld N. (2012) A Practical Guide to Transformative Supervision for the Helping Professions; Amplifying Insight. London: Jessica Kingsley

Supervision at the fork in the road

image1We all start out with dreams and ideas about how our careers will go. It’s hard to foresee when, where or why the forks in the road will come, but it is almost certain that they will. This blog post explores two key ways in which supervision helped me to negotiate a fork in the path, keep hold of my dreams and step into independent practice.

Seventeen years ago, I embarked on a career in Speech and Language Therapy, with a dream to become a neuro rehab therapist. In the early stages of my career I was fortunate to have some great supervisors (also my managers), who nurtured my enthusiasm for neuro rehab.

In 2008, I took a senior post in a small department without access to clinical supervision within the organisation. I was holding a complex caseload, but for the first time also dealing with wider departmental and organisational issues. I felt the need for external supervision to develop my practice and take care of myself as I entered a more challenging stage of my career.

My line manager continued to oversee my work in post, particularly supporting my CPD, and helping me develop the SLT department. The separation of my clinical supervision to another time and place enabled me to attend to the needs of my clients, as well as my own needs, within this increasingly challenging work context. Through external clinical supervision, I had the freedom to reflect on the needs of my clients more deeply and my own journey more broadly.

Hawkins and Shohet (2007) discuss self-care as an important aspect of clinical supervision. Drawing an analogy between the ‘good enough helping professional ‘ and Donald Winnacott’s concept of the ‘good enough mother’. The ‘good enough mother’ may struggle to cope with the rigours of motherhood without the help and support of another adult, just as the helping professional may struggle to cope without the support of a supervisor. At this point in my career, I was faced daily with the devastating reality of people’s lives following brain injury. I was starting to develop quite strong ideas about addressing these needs with clients but also felt frustrated by the difficulties of achieving gains for my clients. I could easily have been worn down by these frustrations, but with wise and meaningful supervision, these difficult experiences ‘….. were survived, reflected upon and learnt from’ (Hawkins and Shohet, 2007). Through supervision, I became much more conscious of my concern to address my client’s ability to participate in their chosen life roles and started to think about how I could facilitate this for them.

It was at this time that my own personal circumstances changed. With a young family I was keen to be as present at home as much as possible without completely losing connection with my profession. I started to explore how to manage this change in my life and find a way to continue working within my chosen specialism.

Cathy and Sam have written about the changing role of supervision which ‘….. has now extended to one that supports and facilitates emotional resilience, opens up possibilities where there seem to be very few and fosters an individual’s personal/ professional resources to manage change’ (Bulletin, February 2013).

With this changing picture, refined by my professional interest and constrained by my personal circumstances, my supervisor helped me to consider diverse options as I stood at this fork in the road. I don’t remember who initiated the idea of independent practice, but I know that this path seemed daunting, much less travelled and insecure. I didn’t know how to begin walking away from the security of paid employment.

The supervisory relationship was a place of safety that allowed me to: test out ideas, evaluate the pros and cons of working independently, make plans and connections, review early steps and ask silly questions. I saw my first independent client in 2009, nearly six years ago. The transition to independent practice has been necessarily slow as I have been at home with my family, but this has brought with it opportunity to reflect on each small step in supervision and build slowly in confidence. With my supervisor’s support this process has been much smoother and more satisfying than it might have been as early ideas have come to fruition.

Work is not how I envisaged it seventeen years ago, but it does really work for me in the context of my life now. However, I could so easily have missed this path if I had not been able to access great supervision at the fork in the road.

Mary Ganpatsingh
www.communicationchanges.co.uk
@Comm_Changes

References
Supervision in the Helping Professions, 3rd edition (2007), Hawkins, P. and Shohet, R.
Supporting robust supervision practice, Sparkes, C. and Simpson, S. (February, 2013) Bulletin

Totally OK to Stammer at Work (2/2)

Iain smile photoMartyn: “Do you ever read poetry?”

Me : “No. Of course not.”

Martyn: “You might try it sometime. David Whyte1, something like that.”

It had been just a short conversation but, as usual, his intuition was spot on.

I’d been discussing with Martyn Brown, my Executive Coach at Ashridge2, my progress towards becoming more of myself at work, including being more open about my stammer.

But poetry, that was a weird one. I was curious.

Fast forward 5 years and here I am gratefully responding to an invitation from intandem to write about how poetry has helped me to forge a much healthier relationship with my stammer. In last month’s blog post I wrote how the Employers Stammering Network3 is aiming to make it “Totally OK to stammer at work”, whereas this article is shaped more towards my own personal journey.

Over recent years, I’ve used my experience of many years in business to confront a series of questions that I wish I’d known the answers to at the start of my career.

And nowadays, I wonder what advice I’d offer to my younger self if he asked me these questions – and, to help his imagination, what lines of poetry might I even share with him? Here’s how our Q&A session might sound:

Q 1 How much will my stammer restrict my career?

A 1: It may surprise you, because you feel so ashamed when sometimes you can’t even say your own name, but the answer rests almost entirely within your own control. Your stammer can dominate your career or it can be almost completely irrelevant. Truly!

For me the big realisation was that it was within my gift to choose how I saw myself with a stammer – either as someone who’s shame and self-oppression for having a stammer would continue all my life – or as someone who could accept over time that it’s “totally OK for me to stammer – even at work”.

That’s so easy to write, yet it took me years to get here. And one of the steps helping along the way was learning that by living more choice-fully in relation to my stammer, I could influence for better or worse the outcomes for my own career. This point about consciously making difficult choices lies at the heart of the closing lines of Robert Frost’s ‘The Road Not Taken’:

 

THE ROAD NOT TAKEN (Extract)4

Robert Frost

 

“I shall be telling this with a sigh

Somewhere ages and ages hence:

Two roads diverged in a wood, and I –

I took the one less travelled by,

And that has made all the difference.”

 

Q 2 : How will I ever become more comfortable with speaking in public?

A 2: For people who stammer, speaking in public is often a step too far – and we avoid it at all costs.

Throughout my career, my relationship with speaking up has been erratic to say the least! My progress has come from taking calculated risks, some successful and others not – but doing it in my own way for better or worse. Stubborn, you might call it. I prefer to call it courageous!

It’s not been easy at all – but it’s definitely been worth it.

This sometimes unbearably difficult path of making changes in mid-life is a core theme of some of David Whyte’s work, and it’s almost as if ‘Start Close In’ was written with the courageous step of speaking up in public for the first time in mind .

 

START CLOSE IN (Extract)5

David Whyte

 

“Start Close in

Don’t take the second step

or the third

start with the first

thing,

close in,

the step

you don’t want to take.

 

Start with

the ground

you know,

the pale ground

beneath your feet

your own

way of starting

the conversation.”

 

Q3: How can I cope when I’m having a bad day with my stammer?

A 3: Some days are just difficult stammering days. You’re tired, nervous or slightly out of sorts – that’s life.

And yes, there’s still pressure not to stammer at work and, even though I’ve learnt to rise above it, it can still feel bruising when it’s been a tough stammering day.

Learning self-acceptance, resilience and perspective has been crucial to coping with those days. Like Derek Walcott’s raw realisation in “Love after Love”, it’s meant looking in the mirror and accepting myself. Accepting that my stammer has always been part of me – and not to try to make it a stranger.

 

LOVE AFTER LOVE (Extract)6

Derek Walcott

 

The time will come

when, with elation,

you will greet yourself arriving

at your own door, in your own mirror,

and each will smile at the other’s welcome,

and say, sit here. Eat.

You will love again the stranger who was yourself.”

 

Q4: Where can I find advice, support and kindred spirits?

A4: Nowadays there is so much support and friendship out here for people who stammer.

Firstly, I’d point towards the British Stammering Association7 (“BSA”) the national charity for people in the UK who stammer.

And secondly to our Employers Stammering Network, an arm of the BSA, where our goal is simply to make it “Totally OK to Stammer at Work”. Don’t worry, we never discuss poetry, that’s just me!

Both the BSA and ESN offer a spirit of welcome – from people who stammer – that’s warm and genuine. Just visit the BSA Closed Facebook group to get a feel for it.

Which brings me to my final poem, from David Whyte’s recent collection ‘Pilgrim’, which develops the theme of arriving amongst strangers who themselves have walked a similar, searching journey.

 

CAMINO (Extract)8

David Whyte

 

“…….other people

seemed to know you even before you gave up

being a shadow on the road and came into the light,

even before you sat down with them,

broke bread and drank wine,

wiped the wind-tears from your eyes:

pilgrim they called you again. Pilgrim.”

 

Before ending, I have an invitation for you.

Please start a conversation with someone about how it’s “Totally OK to Stammer at Work”. You might choose a friend, a colleague, perhaps your boss.

Every conversation is an important step forward in improving workplace culture towards stammering – and if you’re stuck for how to start, you will surely find inspiration in the opening lines of ‘Start Close In’ above…….

I’m keen to hear how you get on!

poetry wordle

Iain Wilkie

Iain Wilkie is a Senior Partner at EY and the Co-Chairman of the Employers Stammering Network (“ESN”). All views and opinions expressed in this article are entirely his own.

 

References

1. David Whyte – Poet, author, lecturer. www.davidwhyte.com

2. Martyn Brown – Business Director, Organisational and Executive Development, Ashridge Business School, and Ashridge Programme Leader for EY.

3. Employers Stammering Network is operated by the British Stammering Association (see 6 below). For further information contact please email either iwilkie@uk.ey.com or Norbert Lieckfeldt at esn@stammering.org or mail@esn.org.uk

4. “The poetry of Robert Frost”, ed Edward Connery Lathem (Jonathan Cape 1967), Random House Ltd, 20 Vauxhall Bridge Road, London SW1V 2SA. “Staying Alive”, edited by Neil Astley, 2002, Bloodaxe Books Ltd, Highgreen, Torset, Northumberland, NE48 1RP.

5. David Whyte, “River Flow”, New & Selected poems 1984-2007. Many Rivers Press, P O Box 868, Langley, WA 98260, USA. www.davidwhyte.com © David Whyte.

6. Roger Housden 2003 “Ten poems to change your life”, Hodder & Stoughton, 338 Euston Road, London NW1 3BH, UK. Farrar, Straws and Giroux LLC, Collected Poems of Derek Walcott, 1996. © Derek Walcott.

7. British Stammering Association, 15 Old Ford Road, London E2 9PJ. For information contact www.stammering.org or 020 -8983 1003 or nl@stammering.org.

8. “Pilgrim – poems by David Whyte, 2012”. Many Rivers Press, P O Box 868, Langley, WA 98260, USA. www.davidwhyte.com. © David Whyte 2012.

The Quiet before the Word

An aneurysm ruptured in my brain when I was 27. The facts are simple enough. Yet, I find this topic resists such simplicity. I had been an American abroad, touring a show to the International Fringe Festival in Scotland. I was onstage when it happened, though I don’t remember when I stopped singing. I don’t remember the fall. My next clear memory was waking up in an Edinburgh hospital, after my emergency brain operation was already finished.

Situations like this tend to be terrifying for those involved, and to my parents who flew across the world to rush to my bedside, their memories of this Scottish hospital are infused by this anxiety. But what I remember most from this place was the Quiet. This was not a Quiet I had known before. It was a presence more than an absence, suffused with a marvelous sense of order.  I had a nothing mind, a flotsam mind, and it was carried on this placid current of Quiet.  To experience this Quiet was to be it. My body had undergone a traumatic experience, but my mind was serene. There was still so much I didn’t yet know about my brain injury – didn’t realize I’d acquired a language disorder called “aphasia” – and that my internal and external voice were both affected. With my inner monologue on mute, I was mainly spared from understanding my condition early on. Unable to pose myself the question: “What is wrong with me?” I did not, and could not, list the many things that were.

I would never want my impressions of the hospital speech therapist to be unflattering. She was nice enough. Attentive. But I registered her presence with a slight irritation. My days were suffused by this occupying and glorious silence, and then this slim woman, with birdlike shoulders, would pester me with things to do. I couldn’t exactly grasp her purpose there, but it was abundantly clear to everyone else. I couldn’t read without assistance. Writing was prohibitive. I could only say 40 or 50 words, and didn’t know when I was speaking in gibberish. It’s sometimes like that with a neurological injury. The brain is the organ of perception, so when your brain is injured, your perception can be injured too. I desperately needed my speech therapist. I just didn’t realize that yet.

My sense of awareness lurched forward in stages. When I was released from the hospital, I had to abandon the independent life I was living in New York, following my parents back to their Los Angeles home for a long language rehabilitation, which involved another brain surgery, and speech and language therapy three times a week.

I had always planned to return to Edinburgh, and visit the hospital that treated me, but it took more than five years to do so. I contacted my SLT beforehand and she didn’t simply want to meet up, she wanted to make me dinner too. She was incredibly warm. Over her homemade marinara sauce, we laughed and caught up, and she expressed her gratitude in being able to work on my case. She told me that many of her patients were often in more acute stages than I had been. They needed help breathing or swallowing. Though my language had been seriously disturbed after the rupture, at least she was able to employ speech exercises with me. That was rare.

I am so glad you decided to come back to Scotland, she told me. Even after such a distressing experience.

I said that actually most of my hospital memories were pleasant ones.

Really? She was surprised. You seemed so frustrated…

Her comment and her past observations made sense, but I also couldn’t correct her at the time. Now I was able to tell her that when left to my own devices, I had been content. Even blissful. The things that disturbed my equanimity were mainly related to other people – their expectations – often motivated by their concern for me.

My SLT gave that a lot of thought. She said that therapists are stuck in a difficult situation. It was important not to infantilize your patients. Even if their language is rudimentary, their minds are usually sophisticated. But when you think of them as adults, as people just like you, your empathy engages. And when you imagine yourself facing such an appalling deficit, you tend to fixate on the desperation.

But when we assume people might be uncomfortable, we start to see discomfort manifesting everywhere, she said. Expect the worst, the worst appears. And we rarely suspect we might be the source of our patient’s discomfort.

This conversation became a touchstone for me, a reminder of the constant limitations we face with our narrow perception.

I realize my brain injury was a generous one, because often I didn’t know what was wrong until I had already recovered from it. And these many years later, I see the perspective of the speech therapist, and the woman in the hospital bed. I am finishing a book about my path back to language, and volunteer with people who live with aphasia. I appreciate the wide variety of linguistic experiences, and as much as I can, I try to give people an opportunity to speak for themselves. Still, I know there is a lot of value in Quiet. And even though a word can be beautiful, so can the silence that precedes it.

Lauren Marks

 Lauren-Marks-ResizedLauren Marks is an American author living in London. In 2007, an aneurysm ruptured in her brain, and since then, she’s been writing her way back to fluency. She has been published in Fresh Yarn, The Huffington Post, Brain World, and Aphasia News, has spoken at venues ranging from book fairs to university classrooms, from professional conferences to storytelling events. In the UK, she volunteers at Connect: The Communication Disability Network. Some of this article includes excerpts of her upcoming publication, A Stitch of Time: Portrait of a Mind in Construction. More at www.AStitchofTime.com .

Insider accounts: Living with communication disability

As a student Speech and Language Therapist (SLT) nearing the end of your training, you begin to feel a bit like you might know a few things. After four years of placements and the range of experiences you have amassed through interaction with a variety of clients and their families, you start to think ‘Ok, I’m beginning to get the hang of this.’ Your tentative steps become surer as you get to grips with assessments and hypotheses and management plans and the wonderful array of devices in the SLT toolkit. But, as a fledgling clinician it is also important to sometimes silence the internal noise of ‘What does this test result mean?’, ‘Which therapy approach do I think is best?’, ‘How many intervention sessions should I give this client?’ And just listen.

In a lecture called ‘Insider accounts: Living with communication disability’, Cathy Sparkes and Sam Simpson provided us with this opportunity. They invited a group of their clients with a range of communication disabilities to come in and talk to all the final year student SLTs at UCL. With our assessor’s hats firmly off, we were able to sit back and listen to people’s lived experiences. All the speakers were very generous with their stories, sharing the painful, puzzling and even playful moments of coming to terms with their respective communication disabilities, both acquired and lifelong, and moving forward with their lives. Many accounts were the result of a number of years of experience and reflection, and it was partly this that made the session so unique for us.

As an SLT, you are generally involved for a very small snapshot of a client’s journey – a few months, maybe a year if you’re lucky. To borrow an analogy, you are ‘a stripe in the scarf of their story’ [1]. But this experience enabled us to more fully appreciate the stripes that come later on, when our input may have finished and our clients have had to renegotiate what it means to live in the world. Furthermore, the speakers were able to give us access to what some of our clients might be feeling now, as we’re meeting them in the early stages after a stroke or brain injury. For example, it may be easy for us to categorise our clients in the light of what they can outwardly communicate. However, the Comprehensive Aphasia Test does not allow us to measure the presence or otherwise of someone’s inner voice – you know, the one that narrates your thoughts and feelings – I had never before considered that loss of spoken language might also lead to inner silence, as so articulately described by one of our speakers.

It was a thought-provoking and at times, moving morning, and overwhelming feedback from the students was that we felt our practice would be changed as a result. The session reminded us to always dig deeper than what we might be presented with on the surface, step outside of our therapeutic comfort zones to provide flexible and individualised support to our clients, and of course, to listen.

Kat UCL Student - 1

 

Katherine Newton
Student Speech and Language Therapist, UCL

[1] McIntosh J., Charles N., Lyon B. & James K. (2011). The Strands of Speech and Language Therapy: Weaving a Therapy Plan for Neurorehabilitation. Milton Keynes: Speechmark

Yoga and Brain Injury

Mail AttachmentI have never written a blog before, but the invitation to do so is a timely one as I ‘grow up’ and find my way with social media on my freelance ‘adventure’. Since I took early retirement from my role supporting people with Creutzfeld Jacob Disease (CJD) and their families in the NHS, my goal has been to develop all the different aspects of my work and life that I am passionate about, and link them in a coherent ‘whole’.

Working with a person’s experience of cognitive impairment, living with the risk of an inherited dementia, my family, travel, yoga …. and my travelling companion Personal Construct Psychology (PCP) are the key things I knew I wanted to be part of this new phase of my life. I worried about keeping focused without the structure of a job to go to in order to keep focused, so with the luxury of now being able to make my own timetable, I went to an early morning yoga class three times a week.

I started to elaborate my sense that yoga could bring relief for my clients living with cognitive impairment. I undertook yoga therapy training for people working with children with special needs with Jo Manuel at the Special Yoga Centre, and started to engage one of my elderly clients in a gentle yoga practice. It is striking how she can remember movements and postures from the previous week, whilst she is unable to remember what has been said just five minutes beforehand. This in itself is a major opportunity for validation in people with cognitive impairment, the critical essence of person-centred interventions, however yoga has a great deal to offer people with brain injury on many levels: rehabilitation, health and well being, managing cognitive impairment and emotional consequences of brain injury.

A year of weekly yoga therapy with a woman who was bed bound following three strokes and diagnosis of dementia, with neurogenic pain and deemed unsuitable for rehabilitation, is now moving herself around her bed, up to sitting, transferring without the use of a hoist. She is also now able to discuss the nature of her difficulties and articulate the changes she experiences in her body. The role of yoga in rehabilitation, promoting and maintaining mobility, breaking down the goals into small and manageable steps for people with neurological challenges and cognitive impairment has huge potential, not least because of its focus on awareness.

Peter Blackaby (2014) explains how it is feeling movement that brings about learning (sensory motor cortex), and not ‘telling’ our muscles to move (motor cortex). He quotes a study where monkeys have had the motor cortex for a skilled movement removed from their brain and yet can still make that same skilled movement. Another part of the brain takes over. However, when the sensory motor cortex is removed for that same skilled movement, the movement can no longer be made at all. Critically it is the noticing involved in the practice of yoga that brings about change in body and mind.

Yoga is well known for the links between mind & body, and yoga practice is in fact a physical and tangible route to achieving a state of meditation, which has evidence based health benefits in generating the opposite of the stress response in the body. There is increasing evidence for change in circulatory, emotional and mental health, in addition to changes at a cellular level in people who are recovering from cancer. From a psychotherapeutic perspective, yoga is also a way of working with the aspects of ourselves that are not easily put into words, and may never even be articulated. In this way yoga brings therapeutic intervention within reach of people with severe communication disorders.

I have been elaborating this idea from the perspective of PCP. Our theories about the world around us exist at all levels of awareness, and while psychotherapy might advocate that its role is to help people articulate their construing at lower levels of awareness, I personally wonder whether that is always necessary for change and wellbeing? In PCP we see words as merely what we use to convey our discriminations and conclusions about the world around us, and there will always be much of our construing that remains inaccessible… that part of our construing which is non-verbal, intuitive, or was developed before spoken language. Yoga enables us to experiment and elaborate ourselves at that nonverbal level and so is it surprising that the practice of yoga brings about changes in our thinking and our emotions?

There are many different forms of yoga, and increasing research evidence for the health benefits of yoga in general, and for yogic breathing techniques and mindfulness in particular. For me, I am interested in what all yoga has in common rather than a specific approach, and its contribution in the process of achieving and practising mindfulness, with a view to developing yoga as a therapeutic intervention with people with dementia and other forms of brain injury.

I am currently taking referrals for one to one work and I go into residential and day care facilities. l now look forward to teaching the first 25 hour yoga training for people living or working with people with dementia and other forms of brain injury in March 2015 at Special Yoga in London. It’s a course for family members interested in exploring ways to engage with their relatives with brain injury, for health professionals interested in the application of yoga with people with brain injury, and for yoga teachers and practitioners wanting to understand more about the experience of cognitive impairment, whether this is stable and resolving, or progressive and/or fluctuating. The flyer can be found at http://specialyoga.org.uk/teacher_training/yoga_dementia/ or you can contact me directly.

Clare Morris
07545 287139
clrmrrs@me.com
www.claremorris.org.uk
@ClareMorrisPCP

News Group: Behind the Scenes (2/2)

I wrote last month about how some of our neuro-rehabilitation service users benefit from the experience of attending the news group we run on the ward.

news2

 

As a service, we have found that we can use our group provision for a number of purposes:

 

We can use the group to provide different packages of care to different service users within the same session. We may invite people to attend news group as part of their goal-based therapy. For example, they may be working towards a more consistent use of intelligibility strategies, or demonstrating increased communicative confidence by facilitating discussion or presenting a news item as part of the session.

Some people know they are able to participate relatively independently in group conversation. However, they may continue to benefit from support, for example to counter the effects of fatigue or distractibility. Further speech and language therapy (SLT) input for these people beyond discharge from our ward may not be indicated, but there are benefits to them continuing to attend the group while they are with us. This monitoring and maintenance package allows room for fine-tuning and further confidence boosting prior to discharge. Such people are also often positive role models for other group members who may require higher levels of support to engage in group conversation.

Some group members still early on in their admission, or newly referred to SLT by others in the multidisciplinary team, may join us for a number of assessment sessions. This may be because the group setting reveals more interactive skills than they are able to show in the often more transactionally-based ward setting. Alternatively, for some there may be an indication of higher-level language processing or social communication difficulties, which do not impact particularly on the ward. Attending the group allows further assessment of the impact, which their impairments may have in more complex group conversation. It can also provide a concrete starting point from which to discuss these subtle difficulties with the service users who may not themselves necessarily consider any difficulties to be present

Group sessions provide rich observation opportunities for new staff and students. Over the past year, we have been joined by students from nursing, medicine, physiotherapy and occupational therapy. We invite new staff members to join us as part of their induction. The richness of the experience of coming to the group as an observer is that there is the opportunity to meet people with a number of different communication diagnoses, and to see in action the strengths and needs these diagnoses may create. A further positive is that none of our observers is passive; anyone coming to visit our group is invited to participate, thus enriching their own experience and learning, while providing further positive role modelling for our service users. Our own SLT students will often take on facilitation of the group for the duration of their placement, which works particularly well with peer placements.

The news group is a joint project between occupational therapy (OT) and SLT. We have found that we need to meet frequently to review and discuss the strengths, needs and progress of each participant to ensure we keep our input focused. Otherwise, there can be a risk of running a session which goes through the motions of looking at recent news stories, but which gives no specific input to any of the packages of care identified for each service user. I will admit that this has happened at times especially if staffing is low or the ward very busy. After a ‘going through the motions’ session, I feel I have facilitated an opportunity for social interaction and the chance for some people perhaps to take on a bit of information about current news events. However, I also feel that the same session could have been facilitated by an enthusiastic volunteer with no specific training in or knowledge of communication impairment.

News group review has now evolved into a joint SLT and OT review of the needs of whoever is on our ward at any given time, and whether there are other groups we could run. This can often change from month to month as we aim to create group opportunities for the people we have on our ward, rather than to try to shoe-horn people in to a fixed format. For example, in the last fortnight we find we have several people with specific comprehension needs and have this week started a ‘points of view’ group structured with a very low language load, but providing opportunities for interaction and expression of likes and dislikes through music appreciation (a clear split in today’s group between heavy metal and the Jackson 5!), chocolate tasting, TV reviewing and more as we plan it..!

Nic Martin

News group: ‘being part of something’ (1/2)

10.30am and this week’s News Group is about to start on the neuro-rehabilitation unit where I work as a speech and language therapist. As I arrange chairs and sort through the newspapers, John arrives without any prompting, having remembered to consult his diary for his programme for the day. John is working on strategies to compensate for memory impairment.

Steve is next to walk in. He has come prepared with a couple of news stories to present to the rest of the group. Steve has had a long hospital stay and is close to getting home now. He wants to fine-tune his speech intelligibility strategies as he hopes to make moves to a gradual return to his job where speaking to small groups is a significant component. The plan is that next week he will co-facilitate the group with me as he has enjoyed re-exploring the nurturing side of his nature; discovering that he can be supportive of others here in hospital just as he has done in his work role in the past.

Jan arrives on time having consulted her diary too. She announces that she has ‘done her homework’. She spent a session with the speech and language therapy assistant yesterday selecting and preparing a news item to present to the group. Jan has used the group to rebuild her communicative confidence. This was low when she first came to us due to difficulties with verbal explanation as a result of generally slowed processing. Like Steve, Jan has now become a supportive member of the group, using sessions both to challenge herself to convey information and her own opinions concisely, as well as to encourage other group members to contribute to the discussion:

‘Other people share topics and I’m learning more. It’s like educating. I’m learning about more and different things. I’m speaking loudly. Preventing other people from butting in because before I just whispered. Now I don’t shut up talking. Definitely more confident. I can tell people ‘shut up, I’m talking!. I won’t cope with rudeness. I liked having the chance to prepare the day before.’

‘I was worried at first about coming but then I actually really enjoyed it.’

news2

As Steve and Jan organise their notes, Hashim comes in, with my occupational therapy colleague and co-facilitator. Hashim finds it difficult to inhibit voicing his every thought, which as well as impacting on conversation, is affecting his ability to engage and benefit fully from his other therapy sessions. We will agree as a group before we start that we will endeavour to let everyone have a turn at getting their point across, and that we will supportively highlight when any group member may be returning to a theme they have already clearly expressed in whatever way they can. This provides a structure for giving direct feedback to Hashim as necessary. He also has the opportunity to interact with positive role models such as Steve and Jan throughout the session’s discussion on world news, sports news, celebrity gossip, local news or perhaps even a bit of light-hearted ‘ward gossip’. More serious ward issues may arise at times. The group is a safe place to express any frustrations and to problem-solve with others possible courses of action. As staff members, we may be able to take an opportunity here to provide information, or to offer to take on an advocacy role for a given issue if needed.

Now Val walks in with a student nurse who wants to learn more about the role of the SLT on the ward, and who will join our group today. Val has marked expressive aphasia. In a group setting, she has been able to show that her functional communication skills far outweigh her abilities in more specific word-finding tasks and in the limited, often practitioner-led, task-focused conversation opportunities which she is most frequently exposed to on the ward.

Vladan too has aphasia. Previously a keen daily newspaper reader, he has said he enjoys the group as it allows him the extra time he needs to absorb information about what is going on in the world. Participating in the group also provides Vladan with unpressured space to try out compensatory strategies, such as drawing or circumlocution, when word finding difficulties arise. 1:1 support from one of the two co-facilitators is available. Any encouragement to verbal output from Vladan is in response to whatever course the group discussion is taking. There are no test questions or situations where Vladan is expected to attempt to convey information already known by others in the group. Some weeks, with his strong auditory comprehension abilities, Vladan may choose to participate primarily by listening and commenting with facial expression (often cynical!), a laugh or a nod.

Josie completes the group for this week’s session. It is not easy for Josie to remain orientated to time and place. The group provides an opportunity for her to receive gentle orientation as we will generally begin by checking the date on the newspapers, again avoiding any direct testing. The daily news then provides ready-made, genuine material for orientation to the times we are living in as the group as a whole attempts to piece together the facts on any given news story before moving on to opportunities for discussion and debate.

‘It’s lively and thorough and makes me feel as though I am part of something.’

Although definitely a place for rehabilitation, our ward does feel very much like a medical ward with people spending large amounts of time at their bed-space on a bay when they are not engaged in therapy sessions or activities. Group members have frequently reported that they enjoy the opportunity to socialise with other people they may otherwise not meet; people from so many different backgrounds and ways of life:

‘Works as a social mechanism – that’s important for people with communication problems. It helped me to work on volume and voice but it was more about confidence.’

Group members consistently express how they enjoy the group sessions and will talk about the news group during their other therapy sessions that day. The group membership can change from week to week according to the admission and discharge patterns on the ward. However, the format of the group is such that as long as we have news to discuss, there will be people on our ward who can benefit from and simultaneously contribute to what the news group has to offer.

 Nic Martin

Please note all names have been changed to protect identities.