Finding Employment with Asperger’s-Interview with JKP author Barbara Bissonnette

JKP author Barbara Bissonnette (The Complete Guide to Getting a Job for People with Asperger’s Syndrome: Find the Right Career and Get Hired) gives tips about navigating the job search for individual’s with AS in a new article featured in the
Metro New York
by Bruce Walsh:

What’s the difference between writing a career book for a person with Asperger’s syndrome as opposed to a neurotypical reader?

There’s a lot more explicit detail in some areas. For example, most books would take certain aspects of the process for granted: How you introduce yourself to the interviewer, making eye contact and smiling. It’s important to discuss the details — casual exchanges of pleasantries. People with Asperger’s usually struggle with that, so I try to prepare them for those moments in the job search. ”

To read the full article, click here: Navigating the job search with Asperger’s syndrome.

“Although fatigue may persist, it can go away” – An interview with Lucie Montpetit

Photo: Singing Dragon author Lucie Montpetit
Photo: Singing Dragon author Lucie Montpetit (Credit: Jackie Fritz)

Lucie Montpetit is an occupational therapist with over 25 years’ experience working in a variety of hospital settings. She runs workshops on managing fatigue, stress and pain using the approach she has developed incorporating a number of different techniques. She has personally suffered from debilitating fatigue and restored her health through the methods she now teaches others.

She is the author of Breaking Free from Persistent Fatigue - new from Singing Dragon.

In this interview, Lucie recounts her personal experience with Myalgic Encephalomyelitis and how overcoming this condition through a combination of occupational therapy techniques and Eastern health modalities inspired her to help others to do the same.

Can you please tell us a bit about you and your personal and professional interest in improving the lives of people with persistent fatigue?

First, I’d like to explain that I chose the expression “persistent fatigue” because although fatigue may persist, it can go away. A frame of mind open to hope is important in healing.

When I started working as an occupational therapist, I was interested in understanding the drops in energy of my patients. Despite people’s motivation to get better, a lack of energy became apparent in rehabilitation. I encountered different types of lack of energy, whether patients were suffering from major depression in an acute psychiatric setting; war veterans suffering from late onset diabetes leading to leg amputation; or young mothers who just encountered their first major energy drop from multiple sclerosis or a rheumatoid arthritic attack. Personally, I went to see a neurologist at the age of 29 because of sudden energy drops and my GP thought I had multiple sclerosis, but nothing was found and it went away within two weeks. Then, after my second child was born, I had multisystemic symptoms that my GP did not understand. He said I must be stressed. But I did not feel I was more stressed than my co-workers and friends who had to conjugate career and family life.

Book cover: Breaking Free from Persistent FatigueEventually, despite my relatively healthy lifestyle, I had to find another doctor who put me on sick leave with the diagnosis of myalgic encephalomyelitis. It took me about two years to recover from the persistent debilitating fatigue. After that I started to do workshops for patients suffering from similar daily challenges. My book reflects in part my own findings to regain my health as well as the work I have done as an occupational therapist with patients suffering from debilitating fatigue associated with different diagnoses. So it is not a book about disease but about finding solutions according to different ways of gaining back one’s physical, emotional and psychological energy balance. For many, it is also a path towards empowerment and finding a new meaning in daily activities.

Can you paint us a picture of what the person with fatigue goes through on a daily basis?

Once the imbalance is severe, here is what I observed in my patients: Sudden energy drops at fixed time during the day or after physical exercise; poor sleep of different kinds (inability to fall asleep, waking up many times during the night with an urge to urinate and/or unable to feel refreshed even after a good night’s sleep); food and environmental intolerances; exacerbation of known allergies or new allergy appearances; dizziness; mood swings; foggy thinking; no buffer to deal with stress; having a hard time doing little things around the house, such as washing dishes, due to lack of energy and reduced capacity to organise and plan; having projects in mind and interests to pursue but the inability to do so due to lack of energy; not being able to lift grocery bags without shaking like a leaf and needing to go to bed right after; preferring to be alone but not necessary being depressed – essentially just needing to use as little energy as possible to “survive another day”.

What causes this debilitating condition?

One thing for sure is that long standing exposure to stress is a cause of this debilitating condition, but not only psychosocial stressors like your work environment, a conjugal separation or the death of a close relative. These can also include viral infections, postural stressors that leads to jaw misalignment and lack of sleep, nutritional deficiencies that prevent the production of energy at the cellular level, candidiasis, and long term exposure to moulds, endocrine disruptors, heavy metals, allergens, electromagnetic smog and other environmental pollutants.

The accumulation of stressors leads to the imbalance of your psycho-neuro-immuno-endocrine (PNI) super system, known by researchers as allostatic overload.

What makes it worse, and what makes it better?

Continuous exposure to stressors of any kind – insomnia, not respecting one’s limitations and forcing oneself to do more – makes things worse. To make things better, get rid of the stressors when possible; eat energising foods rather than energy draining processed foods; modify daily habits to optimize the natural chronobiological hormonal cycles of one’s body; learn to change one’s mode of reacting into a more energising way of responding to daily life challenges; and make informed choices while honouring one’s strength and limitations. Choosing the right physical intensity of exercise to regain one’s capacities is crucial, while choosing key nutrients to optimise cellular energy production is also important in the process. Learning how to breathe efficiently through the nose in order to optimise the oxygen input is also very important.

What is the book about, and what motivated you to write it?

For many years, I have been dissatisfied with medical answers that purport to address the debilitating fatigue suffered by my patients with auto-immune diseases. Lack of resources and understanding, finding quick fix medications such as antidepressants for patients clearly suffering from musculoskeletal symptoms such as fibromyalgia, and having difficulty finding answers with the variety of health professionals I personally consulted inspired me to write the book. I needed to find answers firstly for myself, and then got the urge to share my findings and what I had learned with others facing similar prejudices among some health care practitioners. So the book is about finding personal solutions, different for each reader because of their own type of debilitating fatigue and personal way of over-spending their energy. People will learn how to make an energy balance sheet like one would do financially when consolidating debts. From their findings, they will figure out how to save energy in their daily lives and regain their inner mind-body balance towards health.

Can you talk about how your work and approach is influenced by Chinese medicine and other practices?

As an occupational therapist I was trained to view my patients from a holistic perspective, which is in accordance with my personal understanding. People require a meaning in the activity they are doing in therapy; they need goals of their own to reach in addition to those of my rehabilitation treatment plan for them. From my perspective as a martial artist of many decades, I am also influenced by the efficiency of energy expenditure, the need for the energy to circulate through the meridians and the influence of the breath during outer and inner Qi Gong and martial practice.

For me, the autonomous nervous system (ANS) follows the yin/yang principles. Patients I treat, for different reasons, have lost the balance of their PNI super system. This has direct repercussions on the ANS as it reverts to a constant “fight or flight” reaction mode as a result of too many stressors that leads to a narrow, skewed perception of daily life. In these circumstances, the ANS becomes too much yang.

I teach patients to reconnect with their bodies through their senses, the awareness of their body and posture in space and their breathing pattern. Then I use different Qi Gong exercises according to the level of energy of my clients or Chan Ssu Chin Tai Chi exercises (known as Silk Reeling Cocoon exercises) to reconnect further with their breath and body and the body’s ability to heal itself. Sometimes I use Neurofunctional reorganisation – Padovan’s Method® (NFR) with the patients to regain the balance of their autonomic nervous system and sleep rhythm: it is a powerful tool that follows brain plasticity principles. I had used NFR mainly with patients suffering from neurological conditions that follows brain plasticity principles in the past. Many of the NRF exercises help my clients suffering from debilitating fatigue as well because it helps reorganise posture, breathing, and ANS functions and rhythms.

Once the body starts to regain its natural rhythms, I encourage my patients to implement what they found useful in therapy into their lifestyle. I teach them about chronobiological rhythms so they can choose for themselves the minor changes in their daily habits that can help foster the natural flow of hormones and chi. Finally, when the patient starts to get out of the constant “fight or flight” mode and is ready to respond in a new way, I make use of Cognitive Behavioural Therapy (CBT) principles to help make changes to the energy draining perception of daily life to energising life habits that are better suited for the recovery process. All of those life changes follow the yin/yang principle to break free from persistent fatigue while restoring the inner balance called homeostasis in Western medicine.

How does the book reflect your general philosophy about health?

For me, health is a dynamic equilibrium within oneself. Equilibrium takes place in the physical, emotional, psychological and spiritual dimensions of our lives in relation to our environment. If a person is disconnected from one aspect of his or her self, the imbalance will eventually be reflected in the other dimensions of his or her life. I believe that every person who comes to consult me is in part responsible for restoring and then maintaining his or her PNI super system dynamic balance that we refer to as health. People are amazing at finding ways to change their lives in ways that make sense to them. Once they realise from a new point of view how they were living, they have no interest of returning to their previous lifestyle.

Our environment has never had such a strong negative impact on our health. Depleted soils and foods, pollution of all senses, the intrusion of technology in every aspect of our daily lives and having to deal with the compound effects of so many hundreds of chemicals even before we are born are also major stressors that health professionals too often neglect. These are also consequences of living in a world that is too “yang”. There is an implicit false belief that we have to be busy and multitasking most of the time. We can be proactive in maintaining or restoring our health once we gain knowledge of those relatively new phenomena. Knowledge is power. Feeling empowered rather than feeling a victim of a disease changes your outlook on your condition. This frees your body-mind and it starts to heal itself faster. Allowing a few minutes per day to be rather than to do is sometimes sufficient to maintain one’s inner balance.

Finally, how should this book be used by the reader?

The book is to be read and applied according to your level of energy. As a start, people who have low energy would benefit from knowing how to nourish their bodies to optimise energy production. Then they should go to the chapter that appeals to them. Usually, a gut feeling leads people to what they need. If a reader is too exhausted to concentrate on reading, I recommend bringing the book to a true friend or the health professional he or she is working with to do some of the exercises with the assistance of the health professional.

Copyright © Singing Dragon 2012.

Orthopedic Care in Children with Special Needs

Photo: JKP author Dr. Charlotte ThompsonBy Charlotte E. Thompson, MD, author of Grandparenting a Child with Special Needs

Grandparents who have full or part-time care of a grandchild with spina bifida, cerebral palsy, or a neuromuscular disorder often have questions about what orthopedic care is needed and if appropriate orthopedic care is being received. Unfortunately, many orthopedic training programs place little emphasis on neuromuscular disorders, spina bifida, or cerebral palsy. Nevertheless, a knowledgeable pediatric orthopedist and a physical therapist are two of the most important members of a team caring for kids with these disabilities.

There are several ways that children with cerebral palsy can be helped. One is by injections of botox into spastic muscles, but this must be done by an orthopedist with wide experience in the technique. If a child has a spastic diplegia, where just the legs are involved, he or she may improve greatly with a surgery called a rhizotomy. This may be performed by a neurosurgeon and not an orthopedist. After the surgery, a pediatric physical therapist plays a most important role.

Back surgery for curvature of the spine or scoliosis may or may not help a cerebral palsy patient. The problem is that if the spasticity is severe the scoliosis may reoccur. Thus the pros and cons of surgery in these cases should be weighted carefully and often a second opinion is needed.

Arthrogryposis is a condition where one or more joints may be fixed. Surgery or serial casting can often be helpful, but this should only be done by a pediatric orthopedist with extensive experience in this disorder. Otherwise the treatment may be very painful and ineffective.

Neuromuscular disorders often present real challenges to orthopedists. Curvature of the spine in spinal muscular atrophy, muscular dystrophy, and some of the other conditions with muscle weakness can change a child’s life for better or worse. One of the principal problems is that many orthopedists do not understand that these patients must be mobilized as quickly as possible. They must never lie in bed for several days after surgery, but should be sitting up and receiving physical therapy as soon as possible. One of the most tragic cases I have seen was an orthopedist who technically was very good, but he kept a child in bed for several months and this changed her life forever. She became weaker and weaker and developed severe emotional problems. Some orthopedists insist on back braces for several months after the back surgery, but often this is not necessary.

Another problem with spinal muscular atrophy and some of the other neuromuscular problems is that because of weakness around the hip joint, the hip often comes out of the socket or is dislocated. Even when a child is not walking, orthopedists usually want to surgically put a hip back in place. I have seen cases where the hip dislocated one or more times after being surgically replaced. No surgery should be done unless there is severe pain and that usually does not occur.

Boys with Duchenne muscular dystrophy (DMD) begin to start walking on their toes as their muscle weakness advances and their heel cords become tight. Surgery of the heel cord, called percutaneous surgery, is a specific way the heel cord tendon is cut. This procedure allows the boys to walk much longer. A short-leg brace or Ankle-Foot Orthosis (AFO) (caliper) may be needed after the surgery. With this type of surgery, physical therapy is mandatory the day following the operation. The boys must get out of bed and start walking quickly because if they are allowed to say in bed or use a wheel chair, they may never walk again. One orthopedist operated on a boy without my knowledge on a Friday afternoon. Fortunately, the mother and grandmother knew I had insisted that physical therapy should be started immediately. The child’s school physical therapist was a friend and made house calls over the weekend, so the boy would not stay in bed. He was able walk for several more years because of this. Thus, parents and grandparents must be very aggressive in order to be sure that appropriate orthopedic surgery is being done and physical therapy received, as needed.

Charcot-Marie-Tooth is quite a common disorder which affects the muscle of the feet, ankles and legs, and one of the worst problems for both kids and adults is to find shoes that fit. Patients may have quite high arches and other foot deformities, so specially made shoes may be necessary. In addition, braces or AFOs (calipers) may make a great difference, so a pediatric orthopedist should be seen periodically. Surgery on the ankles and muscles in the legs may be necessary to make a child’s walking much easier. Curvature of the spine or scoliosis can occur and should be checked for periodically. With good orthopedic care, kids should be able to ambulate for a long time, unless there is a rapid progression of muscle weakness.

Children with spina bifida often need back and other orthopedic surgeries. Ideally, these are done by an orthopedist who is connected with a spina bifida clinic and has treated many children. Braces or AFOs (calipers) are extremely important and back braces may be necessary. A good orthotist or brace maker plays a very important role in the lives of these children, as with many children who have both neuromuscular disorders and cerebral palsy. A poorly fitting brace can be painful and ineffective.

One of the important roles grandparents can play is to do a lot of research in order to find the best orthopedic care for a grandchild, if this is needed. Checking an orthopedist’s credentials is essential and in general I would never let an orthopedist who sees mostly adult patients have any involvement with these special kids. In the U.S., I refer to one pediatric orthopedist whose book is the only one published on neuromuscular disorders and I always call him when I have questions. Another orthopedist has a son with cerebral palsy and is an expert on botox treatment. I know some of the special clinics in England have orthopedists as part of their team, so the children in these clinics are very fortunate. E-mail me at for more information.

Copyright © Jessica Kingsley Publishers 2012.

Unlocking a child’s potential through vision therapy – An Interview with Dr. Joel Warshowsky

Joel H. Warshowsky is a Behavioral and Developmental Optometrist. He is Associate Clinical Professor and founding chief of pediatrics at SUNY State College of Optometry where he has taught for 35 years. He has served as Optometric Consultant to numerous schools for child development throughout the U.S. states of New York and New Jersey, and has lectured internationally and published widely in the field of Optometry.

Here, he answers questions about his new book, How Behavioral Optometry Can Unlock Your Child’s Potential.

Can you please tell us about your background and the path that led you to specialize in Behavioral and Developmental Optometry?

I always knew that my life career was going to involve caring for people.

My 35-year path began at the SUNY State College of Optometry in New York. Before I got into this profession, I chose dentistry. I actually took the dental school entrance exam twice. All was fine except for the spatial relationship component of the test. I failed miserably. The handwriting was clearly written on the wall: Joel, you won’t make it in dentistry! What my choices then were seemed to evolve into two somewhat related fields, podiatry or optometry. In as much as contact lenses had an appeal that toenail clippers lacked, optometry it was! Soon I found myself immersed in the specialized area of contact lenses. Any thoughts of visual therapy were far from my mind.

One day I found myself in need of information on accommodative esotropia (a crossed eye), a condition one of my patients had. As a result I met with Nathan Flax, my supervisor and chief of the vision therapy service. I clearly didn’t know how to evaluate and/or treat this condition and Dr. Flax let me know with no uncertainty that I didn’t have a clue. Through Dr. Flax’s efforts, I began to see the effect vision therapy could have on my patients. The changes were as direct and efficacious as the modifications I was making with hard contact lenses. Further, I soon became fascinated with the idea that not only could I affect a patients’ skills in such a consistent, reliable, and valid way, but I could also actually affect the way they felt about themselves. I approached my fourth year with my sights set on the vision training residency. I was accepted as the first SUNY professional in just the third SUNY vision therapy residency. This put me on my way to reach my path, my destiny in behavioral optometry.

What is behavioral optometry, and how can it help a child who appears to be underachieving?

Behavioral optometry is the art and science of treating visual dysfunction as a result of a lag or insult to visual development. Its basic tenet is based on the idea that visual dysfunction is treatable. Behavioral optometry considers vision in a way that lets children know they can develop effective, efficient, and effortless visual function with a resultant positive change in behavior and perception. This, in a very natural way, leads them to be able to resolve their own visual and associated behavioral dysfunctions. They become able to do this by being capable of going to the core of their visual dysfunction and remedying it.

Through behavioral optometry children reach a level of self-discovery within the visual process that introduces them to a new-found freedom heretofore unknown. It is a freedom to know and to cherish their very own true essence of self and their unique and special connectedness to the world. Underachieving children typically don’t feel connected. The process of training children to reframe their visual connectedness with the world is not only about vision. It is about utilizing vision to reframe the relationship between children’s inner reality and their external reality. Vision is merely the vehicle, the classroom, the training ground. The true benefits accrue when a child, perhaps your son or daughter, takes what he or she has achieved in the safe and nurturing environment of therapy and applies it to the outside world. It is then that a child’s entire sense of who they are and what they are capable of, has been modified for the better. And that modification has the potential to last a lifetime.

What is your new book about and what experience(s) motivated you to write it?

This book is about how visual dysfunction can not only create difficulty in sight, but it can also create a false sense of identity. When one has difficulty coordinating and focusing their eyes, there is difficulty locating where objects are in space and identifying what they see. One option is to make up what we think we see, creating a sense of illusion. This book shows how behavioral optometry can redevelop visual function into what I believe is our true inner sense of vision, leading us to our true self. Children who are aware of their true selves emerge into the powerful beings they truly are and thus reach their full potential. What greater gift can we give children than to help them in this process if and when that help is needed?

What motivated me to write this book was the idea that the visual, motor, and/or auditory dysfunctions children face are but one obstacle to their success. The greater the obstacle, however is misunderstanding what they encounter as a result of their dysfunction. They are told that they are wrong. They are told that they are bad. They are even told that they are stupid. Not always in so many words, but the message is nevertheless clear: they are the problem. And as a result of that message, spoken or implied, the harm is done: self-image is severely damaged. Their sense of failure becomes all-pervasive. They simply do not feel safe and they do not have the inner resources to become safe on their own. On top of the perceptual challenges they face, they must also face the challenges of rejection, of pain, and of loneliness. I wrote this book because no child should have to face all of these challenges at the same time. We as parents and as professionals have a responsibility to them, to meet them where they are, to see the world through their eyes, and to guide them to a new and healthier understanding of their full potential and value in this world. They need our help.

What are some misconceptions about vision problems? How can the book help bring clarity?

The most significant misperception about vision problems is the concept of 20/20, perfect vision. There are simply too many times that a youngster is examined by an eye doctor who states that a child’s eyes are fine because he or she sees at 20/20. This frequently leads a school’s child study team and parents alike, to falsely conclude that the child’s vision is not a cause of their reading and/or learning problem. The takeaway message here is that a vision problem is not necessarily because of eyesight, but rather it often results from a focusing and/or eye coordination problem. I cannot stress this enough: bright children will often see 20/20, but they may still not be able to comprehend what they have seen. Vision, one of the primary elements in the learning process, if not the primary one, is so much more than 20/20 vision. Just about any eighth grader can tell you what 20/20 vision means, but parents and educators alike often don’t know how little it means in the process of learning.

If 20/20 is considered the be all and end all of vision, very often the cause of the problem is missed and that child’s problem will continue to be misaddressed. When that happens, when their symptoms are continuously treated while the cause itself is unwittingly ignored, there can be no hope of remediation. The vexing problem will continue to exist with little hope of resolution. Children should be made aware of the joys and rewards of reading and learning. They deserve to know the benefits of knowing what their problems are and what solutions are available to remediate them.

Through this book you will gain a better understanding of the importance of the totality of vision in the learning process. You will recognize that your sole dependence on 20/20 representing vision is a waste of time and money when it comes to finding the root cause of a visually related reading or learning problem.

Copyright © Jessica Kingsley Publishers 2012.

Delivering personalisation in health and social care – An interview with Helen Sanderson and Jaimee Lewis

Helen Sanderson is Director, Helen Sanderson Associates and has written extensively on person-centred thinking, planning and community building. She co-authored the first Department of Health guidance on person-centred planning, as well as the 2010 guidance ‘Personalisation through person-centred planning.’ She was the expert advisor on person-centred approaches planning to the Valuing People Support Team.

Jaimee Lewis is strategic communications adviser to the Think Local, Act Personal Partnership, the sector-wide commitment to transforming adult social care that follows on from Putting People First. She has worked on communicating the personalisation agenda for several years, following her appointment as an advisor to the Department of Health’s individual budgets pilot programme in 2006.

Here, they discuss their new book, A Practical Guide to Delivering Personalisation, and explain what personalisation is and what it looks like; give some examples of how the tools in their book can be used in practice; and discuss why a person-centred approach to social care planning across all services, from mental health to end of life care, is the way forward – especially in difficult economic times.

What is personalisation and person-centred thinking? What kinds of problems did it develop in response to?

Personalisation means more than just personal budgets; it means people having real choice and control over their support on a day-to-day basis. Handing over financial control – as required by current national policy – is crucial, but so too is social workers, support workers, health professionals and others working in a way that sees people as individuals and equal partners; treats people, their families and carers with respect; and does not make assumptions about who people are or what they might want to do, based on labels or lifestyles.

To deliver personalised services, we need to know what is important to a person; how to best support them; the way they communicate and make decisions; and how we are doing in delivering personalised services – what is working and not working. To do this, we need to work to change some of the systems, processes, practices and cultures that have developed over the years around helping people access care and support, building on the good things and changing those that get in the way of personalisation.

Personalisation and self-directed support can be delivered through person-centred practice, which recognises that staff have a key contribution to make in changing people’s lives by adapting and improving the way support is provided. This enables people to take greater control in developing arrangements that make sense to them, their families and carers – which is the reason most social workers and other helping professionals enter their profession in the first place.

‘Person-centred Thinking’ refers to a range of practical tools and skills that staff can use on a day-to-day basis to deliver more personalised services. ‘Person-centred Reviews’ are a way to transform and replace the statutory required reviews in services; to create person-centred actions. ‘Person-centred Planning’ refers to processes for planning around an individual that focus on creating a positive future and being part of a community. ‘Support planning’ is a way for an individual to describe what they want to change about their life and how they will use their personal budget to do so.

Can you tell us about your book and who you wrote it for?

This book focuses on how person-centred practice can be used across all services – including mental health and other services for people with long-term conditions or those approaching the end of their lives – by staff (in whatever role) supporting people in health and social care (and ‘prevention’). We use the term ‘staff’ to include any paid staff or professional role that helps disabled and older people, their families and carers.

When writing, we have tried to include quotes and stories to bring person-centred practice to life and to show what good practice looks like. The examples we share are from a wide range of people in different situations, with people telling their own stories or staff talking about how they have used different approaches. Earlier writing on person-centred planning (for example, People, Plans and Possibilities) shared stories from the lives of people with learning disabilities. In this book, we have intentionally tried to balance this with stories and examples from people with long-term conditions, older people and people who use mental health services.

Some people you will meet several times: James, who is managing a long-term condition; Jennie, a young woman with a personal budget who has autism, and her mum Suzie; Madge who is thinking about the end of her life; and Sandra who describes herself as being in recovery. Although the focus of this book is on delivering personalised services through using person-centred practice, person-centred thinking and planning are for everyone, regardless of whether you are currently receiving a service or not, so the examples also include people who don’t receive services, families and carers. So you will meet Michelle, who planned with her Dad around his future; Helen who is part of a support circle; and Jaimee who has used person-centred thinking to improve her well-being.

The book features lots of practical tools and photocopiable templates. Can you give some examples of the ways in which the book can be used?

Health and social care workers, support workers and other professionals need to understand person-centred thinking tools and person-centred plans – and to coach their staff and colleagues in using them – to deliver self-directed support. The tools offer a way of learning and understanding the balance between what is important to and for a person; enhancing voice, choice and control; clarifying roles and responsibilities; and providing analysis and action. By looking at what’s working and not working in someone’s life, you can determine which person-centred thinking tools to use and build a person-centred description to inform a person-centred plan or support plan.

There is a process for making statutory reviews person-centred. This is called a person-centred review or an outcome-focused review (where the person has a personal budget). These create shared actions for change, based on a reflection and analysis of what is working and not working for the person, and others. They can be used across services, and in mental health services, to change a typical care programme approach for the better.

Person-centred practice contributes to every stage of a person’s journey of support through adulthood. Improving an individual’s connection with the community by making them feel ‘good’ and improving their well-being is one way of meeting the prevention agenda and potentially reduces the need for unnecessary support.

Person-centred practice can also provide a different approach to recovery – based on partnership – that asks people what they would like to achieve and then helps them to do that. It means doing things with people rather than to them.

When people have long term-conditions, person-centred thinking tools can help in the development of personalised care plans that, when done in partnership with healthcare practitioners, meets a person’s support needs in a way that suits their ‘whole life’. This extends to dementia where care mapping occurs in residential homes.

Person-centred thinking can also help the re-ablement journey, as the way people maximise their independence will be unique to them. It allows for people to be involved in all discussion and decisions about their support and strengthens natural support networks and community involvement.

When people need ongoing support, carers may find person-centred thinking tools helpful in ensuring their own support needs are acknowledged. Investment in person-centred thinking and a determination to ensure people have as much choice and control over their support means it is possible to personalise domiciliary care, even if only 15 minutes is available, and ensures that people keep their individuality in residential care settings.

When people are approaching the end of their life, person-centred thinking tools and plans can help a person, their families and carers to better manage this and experience things in a way that makes most sense to them.

It should be possible for a person to get support that enables them to manage identified risks and to live their lives in ways which best suit them. In order to achieve this, a person-centred approach is required, based in the use of person-centred thinking tools. This will help people and those who care about them think in a positive and productive way about achieving the changes they want to see while keeping risk in its place.

Do you think there are misconceptions about personalisation? What are some of them, and why do they persist?

Personalisation is often thought of as only being about personal budgets. It isn’t.

Personalisation is about people having better lives through more choice and control over the support they use. We believe that services and support should be more personalised, according to the needs and wishes of the people who use them. They should also be provided in ways that help people to be active and contributing members of supportive communities and take into account preventative help and services that affect a person’s whole life, including health, transport, housing and leisure activities.

Misconceptions prevail because of the focus on reaching targets – the most measurable one being the NI 130 indicator for personal budgets. The launch of “Making it Real” – citizen-led benchmarks for success with personalisation – should go some way to addressing this.

Also, there is a risk that people think the delivery of personalisation is undermined given the challenges of the current financial climate. Person-centred thinking and planning helps people think about all the resources available to them, and then helps them and the people who support them use those resources to their full effect. It makes every penny of funds they receive – either from public or private sources – stretch so much further. When money is tight, it is even more important to use resources as effectively as possible. And what better resource is there than what a person (or those close to them) believes is important to them and works well for them and what they want for their lives? We can’t afford not to listen to people well and to act on this information.

Personalisation has been championed by the current UK Government. How do you see it being employed within health and social care in future?

Further and faster it seems.

The current vision for health and adult social care in England requires ‘individuals, not institutions’ to take control of their support. It calls for all eligible disabled and older people as well as people with long-term health conditions or who are approaching the end of their life to have access to direct payments or personal budgets. This hands financial control of the support available over to people, their families and carers so they have maximum flexibility in deciding how they can achieve their desired life outcomes. So that people are truly empowered to do this, person-centred practice and self-directed support should become mainstream activities in personalising health and social care.

The Law Commission’s proposals for modernising community care law and Dilnot’s report on funding options Fairer Care Funding are also clearly crucial as we head towards the forthcoming White Paper in 2012.

Organisations and individuals working with people who need support are starting to understand that in order to deliver personalisation, there must be root and branch changes to policies, practice and culture. This increased awareness has been supported by the disabled people’s movement – the introduction of direct payments legislation in the mid 1990s was one of their key achievements – but also by the work of successive UK governments from both sides of the political spectrum.

Copyright © Jessica Kingsley Publishers 2011.

Misdiagnosis in Neuromuscular Disorders – What Grandparents Need to Know

By Charlotte E. Thompson, MD, author of Grandparenting a Child with Special Needs.

Over the years, many grandparents have contacted me about how to be sure a grandchild with obvious muscle weakness received a correct diagnosis. Unfortunately, misdiagnosis often occurs because there are no diagnostic tests for many neuromuscular disorders and not enough pediatric neuromuscular experts world-wide. This is particularly true in the U.S., where the specialty is not a lucrative one. Also, where research grants are obtained in the U.S, the researchers involved are often not clinicians.

Physicians who are neuromuscular specialists have long recognized that there is a high incidence of misdiagnosis. Some surveys find the statistic to be as high as fifty percent – though my experience with children has been that the number is probably greater than fifty percent. An incorrect diagnosis can be harmful in several ways. If the diagnosis might be one where the patient is at risk for a potentially fatal condition called Malignant Hyperthermia (MH), this should be known so that proper precautions can be taken if an anesthetic is needed. If a child is a risk for MH, then close family members, including grandparents, should also be aware of potential problems with an anesthetic.

Another problem with an incorrect diagnosis is that when treatment becomes available for a specific disorder, it can not be started and the condition could rapidly deteriorate. I have seen several patients diagnosed as having muscular dystrophy when they actually had polymyositis or dermatomyositis. Both of these conditions will respond exceedingly well to steroids if the medication is started right away and given in appropriate doses. One child I saw, who was diagnosed as having muscular dystrophy, had obvious dermatomyositis and responded extremely well to prednisone or steroids. Fortunately, the parents and grandparents did not accept the prominent neurologist’s diagnosis and came from out of state to see me. The neurologist however, refused to accept the diagnosis even when the child was rapidly improving with treatment! Parents and grandparents need to trust their own instincts.

If a grandchild has been given the diagnosis of a neuromuscular disorder, I would first check to be sure the physician is a pediatric neuromuscular specialist. If not, I would look for a doctor who is an expert in order to be sure the diagnosis is correct. I currently refer to just one specialist in the U.S. and to one in London. You are welcome to e-mail me at for their names and locations.

With all the research that is now taking place, misdiagnosis of muscle weakness in children should be improving and it certainly is in the pediatric neuromuscular centers located in the UK, China, Turkey, Kuwait, Tunis, France, Italy, and Germany. Unfortunately, when biopsies are obtained and the pathology slides are reviewed by doctors without neuromuscular training, the high rate of misdiagnosis still occurs. I think this is particularly hard on grandparents who may want the parents to get a second opinion but feel they can only push so far. Many parents these days are busy working one or two jobs, have financial or insurance constraints, and also have misplaced confidence in their local doctors. Grandparents, who have seen the deterioration in medical care, know that a second opinion is always needed when there is a serious diagnosis. My advice to grandparents is to do some research on your own, bide your time, and then present the research to the parents at a dinner out or a quiet time when the children are in bed.

Copyright © Jessica Kingsley Publishers 2011.

JKP at the Frankfurt Book Fair

JKP is exhibiting at the Frankfurt Book Fair this week.

Jessica Kingsley took a few minutes between meetings to talk about why we attend this major international event, and to highlight some of the things we’ve been talking about.


Dramatherapy Approaches for People with Profound or Severe Multiple Disabilities – An Interview with Mary Booker

Mary Booker, MEd is a dramatherapist with over 25 years of experience working with a wide variety of client groups. She has been involved in the education of dramatherapists for 21 years and is currently the dramatherapy trainer on the University of Worcester’s MA in Dramatherapy in Exeter. Alongside this work she has spent 12 years teaching at a school for children and young people with visual impairment and complex needs.

Here, Mary answers some questions about her new book, Developmental Drama: Dramatherapy Approaches for People with Profound or Severe Multiple Disabilities, Including Sensory Impairment.

Why did you enter the field of dramatherapy?

During the 1970s in London, I was involved simultaneously in theatre (at the Questors Theatre, Ealing) and personal development / therapy (encounter groups, bioenergetics, natural dance, etc.). I sensed then that the acting I was engaging in was also supporting my personal process, but never went anywhere with it. My encounter therapist at the time encouraged me to consider training as a therapist myself, and I was attracted to the idea – but also very questioning about what my motivation might be. It just didn’t feel right at the time. I was already a practicing teacher, working in mainstream middle schools. I decided to give it all a rest when I knew I was pregnant, and I became a full-time mother until my two children were school age. By that time we were living in Devon. One of my first forays into work, following the birth of my children, was as a weekend care assistant in a home for the elderly near-by. One lunchtime someone came in to see the manager, saying he was a dramatherapist. It was like a light going on – two earlier passions of my life coming together! I enquired where he had trained and, voila! I got a place on the Devon dramatherapy training course. I have felt totally inspired by my dramatherapy work ever since.

How did you come to specialise in special education?

As I mentioned, I worked in mainstream education in the 1970s in London. I remember one specific little boy, who really didn’t fit within the classroom. He clearly needed special help, emotionally and educationally, and I decided to keep a diary on everything I observed in him, as well as trying to create new ways to connect with and support him. This diary eventually enabled him to get a place at a special school where his needs could be catered for in a more individual and focused way. The unique relationship we managed to create together has stayed with me and I have often wondered how life worked out for him.

After training as a dramatherapist, I worked for 10 years with many different client groups. I especially enjoyed the work with learning disabled people, including those with profound disabilities. I met some other inspiring dramatherapy practitioners who had created their own unique ways of relating creatively with profound clients. When I decided to return, part-time, to education, I got a job at the school described in the introduction to my book. The young people there just really drew me in and held my interest and attention.

What is Developmental Drama?

Developmental Drama is the focused use of drama to specifically promote development in people who have profound or severe global developmental delay. Development is considered holistically, and the different kinds of development (communication, social, emotional, cognitive, etc.) are all an integrated part of the process of sessions.

I have so many memorable experiences of using Developmental Drama. They all are amazing and important to me: Someone’s face full of laughter and sheer joy when their name is “drummed” to a climax in the warm-up. The concentration on another as they focus for all they are worth on something happening in the circle. The sudden, unexpected and totally right response to a new event in the story. The first time a young man, who has always said he is “happy”, tells me that he is “angry” – and means it too! A whole group of children with multi-sensory impairment huddled together, looking upwards in wonder at a new and bright “hole in the sky!” It goes on and on. I am a very lucky person.

How quickly can you expect to see positive results in a client? Is there any way of measuring outcomes?

As I described in the book, there are observable, positive changes in behaviour and responses that can happen quite quickly. This is usually because the environment of Developmental Drama allows people to demonstrate abilities they actually already have that have not been observed by others, due to a lack of appropriate opportunity, support and motivation. Genuine moves forward in development will occur, and I feel it is very important to specifically work towards this. Moves forward will be small, and they will be specific to the individual, considering the barriers to development that are unique to them. There are a number of developmental measures that are used in special education. I had wanted to try to adapt aspects of them to the Developmental Drama process. It is a job for someone still to do. It is also important for new skills that are worked on within sessions to be picked up and worked with by others involved with the clients in their lives outside of sessions. This can be hard to make happen, but attention should be given to it. The most important outcome is a happier, more communicative person – a qualitative outcome that relies on feedback from parents, carers and other professionals that might be involved. Bringing parents and other professionals sensitively into sessions, so they can see for themselves what is happening and what is possible, is important.

What prompted you to write this book?

I have recently retired from special education, although I am still involved in the training and supervision of dramatherapists. I was encouraged strongly by the dramatherapy students I took on placement, by other professionals including the teachers and TAs I worked alongside and by dramatherapists who also work with this client group to share what I had learned in a more far-reaching way. It was also a way of honouring the many young people who took part in my Developmental Drama sessions over the years.

My main hope is that the book will inspire more practitioners to work with these clients. I also hope that the ways in which I have worked will be developed & changed – and that those new ways of working will be shared with others as well. It is, potentially, such an exciting and creative area of work, that can make real differences to the lives of people with profound and severe disabilities. I have worked hard, but there is so much more to do!

In the book you stress the importance of support actors in Developmental Drama, but he idea of ‘acting’ may be intimidating to staff without a theatrical background. How can this be overcome?

I think I describe this in detail in the book. Basically, just like the clients, they need to be accepted as they are and helped to feel safe and respected. Then they need structures to support them to carry out their role within the sessions. It is usually when they really see the difference in the people they support that you begin to get them on board. It does not happen “over night”!

Copyright © Jessica Kingsley Publishers 2011.

JKP Books Honoured in ForeWord Magazine’s 2010 Book of the Year Awards!

We are thrilled to announce that several JKP books have been honoured in ForeWord Magazine’ Book of the Year Awards, which were established to bring increased attention to the literary and graphic achievements of independent publishers and their authors.

Dr Darold Treffert’s Islands of Genius: The Bountiful Mind of the Autistic, Acquired, and Sudden Savant won the Silver medal in the Psychology category;

Susan Yellin and Christina Cacioppo Bertsch’s Life After High School: A Guide for Students with Disabilities and Their Families won the Bronze medal for Education;

And Rudy Simone’s Aspergirls: Empowering Females with Asperger Syndrome received an Honorable Mention in the Women’s Issues category.

Each of these books also won medals at the 2010 Independent Publisher Book Awards last month.

Master Zhongxian Wu’s The 12 Chinese Animals, published by JKP imprint Singing Dragon, also received a ForeWord Book of the Year Award this year, scooping the Silver medal in the Body, Mind & Spirit category.

Congratulations to our award-winning authors and everyone who worked hard to publish these books that make a difference!

Copyright © Jessica Kingsley Publishers 2011.

JKP Wins Gold at the 2011 Independent Publisher Book Awards

We are thrilled to announce that JKP has won several medals in the 2011 Independent Publisher Book Awards, including two Gold medals!

Darold A. Treffert’s Islands of Genius: The Bountiful Mind of the Autistic, Acquired, and Sudden Savant won the Gold medal in the Psychology/Mental Health category. 

Rudy Simone’s Aspergirls: Empowering Females with Asperger Syndrome was also awarded a Gold medal in the Sexuality/Relationships category.

And Life After High School: A Guide for Students with Disabilities and Their Families, by Susan Yellin and Christina Cacioppo Bertsch, tied for the Bronze medal in the Education/Academic/Teaching category.

The “IPPY” Awards, launched in 1996, are designed to bring increased recognition to the deserving but often unsung titles published by independent authors and publishers. Medalists will be honored at a gala awards ceremony in New York City on May 23rd.

Congratulations to the editors, authors and everyone who contributed to these award-winning JKP books!

Copyright © Jessica Kingsley Publishers 2011.