The Making of ‘Dad’s Not All There Any More – A comic about dementia’.

Alex Demetris is an illustrator, cartoonist and maker of comics. He completed an MA in Illustration in 2012, which resulted in a comic based on his family’s experience of coping with his father’s dementia: Dad’s Not All There Any More – A comic about dementia. Here he shares a little about the process of creating the comic and some of his pre-publication sketches (click to enlarge the images).
Alex also co-authored Grandma’s Box of Memories: Helping Grandma to Remember.

The idea for Dad’s Not All There Any More came to me whilst I was studying for an MA in illustration at Camberwell College of Art.  I had been making comics and drawing cartoons as a hobby for a number of years, and decided to enrol on the MA to see how good I could get by focusing on my hobby full time.

The first term involved writing a proposal for a final project.  I toyed with one or two ideas, but it eventually occurred to me that the most interesting subject I could address in my project was what had been going on in my life right then – my Dad’s illness and how my family was coping with it.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Preparing for the comic involved talking through Dad’s medical records with my Mum, internet research into Lewy Body Dementia, taking reference photos, and doing a lot of character and planning sketches.

character studies

 

 

 

 

 

 

 

 

 

 

One thing about making comics is that you can’t really edit them once you have drawn them, so it is necessary to meticulously plan out the best way to get the message across in a limited number of
panels.

During my MA I was also learning to use Photoshop as a colouring tool, so I decided to keep the colour scheme simple.  I arrived at the greenish look from some experimentation and feedback from tutors and peers, while the contrasting colouring of the Lewy Bodies and resulting hallucinations in pink developed as I progressed through the comic.Demetris- pg 7 - image

I wanted to create a comic that was entertaining but also educational, to tell a story and also to present facts about a condition that is not well known despite being pretty common.  Additionally, I think that a lot of people view the idea of having a relative in residential care as horrendous, but I wanted to show that in the case of my Dad, who was lucky enough to be admitted to an excellent home, this was not the case at all.  He seemed content and comfortable in residential care, and I enjoyed visiting him there, and seeing what the other residents and staff were up to.

I was very pleased with the final project and am very proud that it has now been properly published.  I hope that, as intended, readers will find it to be both entertaining and educational.

Find out more about the comic, read reviews and order your copy here.

You can also see more of Alex’s work on his website here

All images are copyright Singing Dragon and Alex Demetris.

Finding the link between Mind Clearing and mental health

With over 30 years of experience in Mind Clearing under her belt, Alice Whieldon walks us through her journey as she developed her understanding of mindfulness and mind clearing.

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I became interested in the question of what constitutes good help at an early age.  My father had an alternative conference centre in the 1980s and I cooked for the many and varied groups that came through the place for a while, when I left school.  One that particularly struck me was the Enlightenment Intensive (EI), a three day intensive meditation course combining features of a Zen sesshin with partnered talking and listening.  They have been popular since the 1960s and are one of the contributions made by, Charles Berner or Yogishwar (1929-2007).  I joined an EI, pretty much without thinking about it.  I never looked back.

In short, it blew my mind, quite literally, and I did several such workshops over the next few years.  The experiences I had on them gave me a solid grounding in mindfulness mediation as well as personal insights into the human condition that have been invaluable.  I was aware of Mind Clearing, a counselling-style approach associated with the EI, but I was moving on to other things just then and shelved it for another time.

But the EI had opened a different way of being to me and my life, in the 30 years since then, has been shaped by that experience.  I had, at 18, clearly seen two paths before me, one in which I could become an even more sophisticated version of who I thought I might be.  The other, far more compelling was the journey to who I actually am.

The difficulty I then encountered, however, was how to live in that truth and develop my understanding while operating in the world.  So, alongside my academic studies, including a PhD in feminist and spiritual ideas of selfhood, I studied Shiatsu.  I had also come across this Japanese art at the conference centre and it was the one other thing that really touched me.  In that too, I recognised the potential for opening more into Truth.

Life went on and, as I studied and practised I became ever more interested in finding out what really helps us in emerging from the trouble and noise of the mind and working towards deeper fulfilment.  I was never willing to rest until I had made progress in this understanding and experienced for myself how to make it manifest.

In 1997 I met a radical Japanese teacher of the art, Kishi Akinobu.  In his work I again recognised the clarity I had first experienced many years before through the EIs.  So I stopped everything else and studied with him; eventually we wrote a book together, Sei-ki: Life in Resonance, the secret art of Shiatsu, 2011, published by Singing Dragon.

Some of the questions that arose for me while writing that first book were again about the nature of help and I began to think about how to bring the deep soul medicine of Sei-ki to a modern audience through the modern medium of talking.  I also wanted a theory of mind that would enable me to discuss help and progress in a way that made sense to me.  I had studied psychoanalytic theory for my PhD, experienced a good deal of personal psychotherapy and started, though never finished, a training in psychotherapy.  For me, the theory failed to match my actual experience of people and my own view of reality.  But Mind Clearing was different.

When I re-read the lectures Berner had given in the 1970s, informed by his work with Indian guru, Swami Kripalu, and Patanjali’s Yoga Sutras, I began to see the possibility of a theory that not only explained the mind and human condition in a thorough way that made sense of all the work I had done, but it offered a comprehensive formula for what helps and why.  So I decided to write a book on Mind Clearing, partly out of personal interest and a pleasure in writing, but also to offer information and a coherent talking practice that I believed then, and believe more now, was a quietly radical approach that worked.

In time I trained in Mind Clearing and became a practitioner.  I learned that it had far more to offer than I thought at first and also appreciated why no one had written a book about it before, even though it has been around since the late 1960s and has had a steady training programme and enjoyed modest but solid interest.

What I found was that, while Mind Clearing is not a cure-all, it is the most coherent account of the mind and formula for help I have come across.  It looks in many respects like other talking therapies, but at its heart offers something different.  At first the difference may seem a small thing.  But in the gap between – worlds turn.

Mind Clearing grew out of the same philosophy as much mindfulness meditation but digs deeper and explains more.  It too is based on the premise that you are not your mind.  The mind is defined as a substitute for direct communication.  It is the sum of our ideas about people and the world.  We use the mind as a buffer between us and others because we think it keeps us safe from pain.  But the mind is finally in the way of a good relationship and brings only noise and confusion.  It is only by through learning again how to communicate directly instead of through distorted ideas and behaviour that our relationships begin to heal and we can find the deep fulfilment we are looking for.

This account will be more or less recognisable to many who know about psychotherapy.  What Mind Clearing offers over and above this is a focus and clarity in identifying what it is about help through communication that leads to fundamental change and greater happiness.  By identifying the key it enables us to take out some of the guesswork and makes help more effective and replicable. Mind Clearing is a big help.  It speaks to the real you buried in the mind and invites it to step forward.

But you do not have to become a Mind Clearing practitioner to benefit from it.  The description Berner gave of the mind, confluent with that of Patanjali, is valuable for its clarity and the freedom that offers.

This book is just an introduction.  It barely touches the depths of Berner’s work but will, I hope, offer enough to be useful.  It takes the next step in the mindfulness revolution in bringing that understanding into the heart of one-to-one communication and assistance.  It goes beyond just being present to what is going on and introduces the dynamism of the now that opens when communication is repaired.

Alice Whieldon is a Mind Clearing practitioner, a Shiatsu practitioner and teacher, as well as an Associate Lecturer with The Open University. She is a Senior Fellow of the Higher Education Academy. Alice is the co-author of Seiki: Life in Resonance, The Secret Art of Shiatsu, also published by Singing Dragon, and she lives in London and Norwich, UK.

9781849053075

 

Mind Clearing

 

Available now!

 

£16.99/$32.95

International Day of Persons with Disabilities – rights-based approaches to living better with dementia

As today is the UN’s International Day of Persons with Disabilities, and in support of Alzheimer’s Disease International (ADI) and Dementia Alliance International (DAI)’s  call for global Gordon-Swaffer-_Living-Better-w_978-1-84905-600-7_colourjpg-printrecognition of dementia as a disability, we wanted to share this short extract on rights-based approaches from Shibley Rahman’s recently published book, Living Better with Dementia: Good Practice and Innovation for the Future.
Read the full extract, which includes Kate Swaffer’s prescribed disengagementTM  model, here.

You can also read Shibley’s blog post on this topic; “Dementia as a disability needs to encourage sustainable achievable goals”, here.

To find out more about Living Better with Dementia, read reviews or order your copy, visit the book page here.

Capturing the darkness and the light in the lives of looked-after children

There are days when stories with perfect beginnings and perfect endings just don’t cut it at reading time- Ali Redford, author of The Boy Who Built a Wall Around Himself, wanted to write a book for her son that he would be able to relate to with his experiences of early trauma. In this blog post, Ali explains the story behind the boy who built a wall.

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I wrote this book to scratch an itch. Something had been niggling away inside me since my children were very small.

As adoptive parents, my husband and I had missed out on our children’s very earliest years, which we knew had not been at all idyllic. They had previously had three different foster carers, one of whom had taken them to the library every week and encouraged a real love of stories. My boy Blue was then three and clinging on desperately to positive memories of his birth family. These included reading Peter Pan on his birth dad’s knee, which probably did more for Blue’s love of books than anything we have done since! But such good times were not the norm in his first two years.

Despite scouring Amazon and local book shops, we found few, if any, stories that seemed to acknowledge or recount anything but a perfect start in life. Even those books which recognized that early life could be traumatic often put the responsibility for any misery onto step mothers or evil adoptive uncles – really unhelpful at a time when we were trying to help our children form loving attachments! Our most useful and beloved books in those early days were probably John Burningham’s Borka, Debi Gilori’s No Matter What and The Ugly Duckling. As Blue got older he latched on to Harry Potter with a vengeance – but Harry grew up too fast, too soon for Blue and the books (which we read avidly anyway) were already too advanced to begin with. We had needed something else, something simple, with strong images that conveyed both the dark times and gave the reader a feeling of hope.

At the time I wrote The Boy Who… our family had just (reluctantly and temporarily as it turned out) finished three years of therapy at the excellent Family Futures. I was having to draw on everything I had learned about therapeutic parenting from them to help my boy through an extremely difficult last year at primary school and transition into secondary. At home, we were coping with lots of very challenging behaviour, but deep down I knew it wasn’t really my boy, but the trauma he had suffered showing itself through him. Boy is basically my boy Blue, with several pinches of salt and a light sprinkling of sugar. The character of Someone Kind is based on our wonderful Family Futures therapists, with the best of my husband and our support network thrown in. The wall metaphor just came. It should not be confused (although it may well be) with a different but equally helpful wall used by Adoption UK to demonstrate why adopted children do not always recover from the gaps in their early lives. But that’s another story!

I’m almost ashamed to say I wrote The Boy Who… in about half an hour, tweaks aside. I showed it to a few close friends before asking one of them to illustrate it for me. As the mother of one of Blue’s oldest friends, I knew Kara Simpson would understand what I was trying to say and do. She also happens to be one of the best illustrators I know.  Her work on the book took considerably longer to do than mine but I’m sure everyone will agree her beautiful illustrations perfectly capture the darkness as well as the light in the story.

So there you are, that’s our little book. My itch has been scratched and if a few more traumatised children now have something they can really relate to or which helps them move on in any way, any minor discomfort of mine will have been well worth it.

Ali Redford is an adoptive parent of siblings who has worked in education, theatre and marketing. She has been through a lot of family therapy and, on a good day, seems to be coming out the other side, touch wood.
9781849056830 (1)

The Boy Who Built A Wall Around Himself
Available now!

ISBN: 978-1-84905-683-0

Price: £9.99

5 essential tips for toilet training children on the autism spectrum

MacAlister-Flem_Toilet-Training_978-1-84905-603-8_colourjpg-printThe authors of the new book Toilet Training and the Autism Spectrum (ASD): A Guide for Professionals Eve Fleming and Lorraine MacAlister, share with us their top tips for practitioners training children with an ASD to appropriately use the toilet.

Learning to use the toilet is one of the most important life skills to teach a child with autism. It is necessary to create independence and allows opportunities for other activities, including those that help to develop socialisation. It is also important to remember that for older children it is never too late to start toilet training, or to address any problems with independent toilet skills that are occurring. So here are our top 5 things to consider as a professional working in this area with children on the spectrum.

Firstly – familiarise the child with the language of using the toilet
Preparation for helping children with autism learn to use the toilet is essential. One of the first things you should do is to familiarise the child with the correct vocabulary and steps to using the toilet safely. This includes learning the words for wee and poo, understanding what toilets are for and where the wee and poo should go. This can be done before starting formal toilet training and leaving off nappies. For children with delays in language and understanding, pictures, signs and objects may be used to help them understand and communicate.

Next – try to make the bathroom fun
For many children with autism, toilet training can be a challenge and may take some time. Families will need ongoing support through this process. Often children with autism have become comfortable with using a nappy, they may dislike the idea of change, feel uncomfortable in underwear and thus resist doing their wee and poo in the toilet. The result is that they find the toilet to be a frightening place to go to, this is not good for anyone. It is important to try your best to cultivate the bathroom environment as an area where they can enjoy themselves or at the very least not feel frightened. Think of it as a place where they can play with bathwater and perhaps the interesting smelling bathroom products and try to transmit that across to them while at the same time remembering the importance of the language you use to describe going to the toilet.

Thirdly – time it right
It is important to choose the right time to start learning to use the toilet. This needs to be best for the child and the family. Consideration may need to include careful thought about what things are impacting on the family. If there are changes occurring such as starting school or changing class it may good to let the child settle before starting to help them learn a new skill.

Never forget – the physical developments concerning bowel control
It is essential to consider the physical development of the bowel and bladder as well as that of the child’s autism spectrum condition. Problems with bladder control, especially immaturity of control, are common in all young children including those with autism. Difficulties such as constipation are also common, especially for children who have rigid diets, and for those who sometimes learn to hold on to their poo. These factors need to be assessed and treated, as problems with bladder and bowel control can create significant difficulties with toilet training.

Always ensure – that you have broken down all the tasks clearly enough so that everyone is on the same page
Employing a step by step approach to developing the skills to use the toilet is undoubtedly the best way to learn, but it is crucial to ensure that everyone involved with this part of the child’s development is providing them with the same messages as well as using the same strategies. It is essential to make sure the parents, siblings, family members, carers and teachers are as clear as they need be about the targets you are setting and the methods being used to achieve them. This will ensure that learning is consistent and that the child becomes used to developing the skill in different settings.

 

Eve Fleming and Lorraine MacAlister are the authors of Toilet Training and the Autism Spectrum (ASD): A Guide for Professionals which is now available from Jessica Kingsley Publishers

Fight, flight or freeze; your body’s alarm system – author interview

K. L. Aspden has worked as a therapist with both children and adults since 1998. She has particular interest in the areas of trauma and anxiety, and she has experience working in both mainstream and special schools. She currently works in a school for children with emotional and behavioural difficulty, and is the author of Help! I’ve Got an Alarm Bell Going Off in My Head!: How Panic, Anxiety and Stress Affect Your Body.

1) What inspired you to write this book?
I work with some amazing children and teenagers, many of whom are frequently triggered into the fight/flight/freeze response. This can result in upsetting behaviours such as shouting, crying, hitting etc. They have no idea what is happening in their bodies and often feel too ashamed to talk about it, even when they are calmer. This is very sad. Having seen and heard what they go through, I wanted to write something to assure them that it is not their fault. I wanted to teach them about the physiology behind their feelings and show that there are things we can do to help ourselves.Aspden_Help-Ive-Got-an_978-1-84905-704-2_colourjpg-print
Above all I wanted to normalise this experience. Whilst we may not all react with the same intensity, everyone has an in-built ‘alarm bell’ (known as the amygdala) which can trigger powerful responses. An understanding of this can help anyone when they are going through periods of stress or anxiety.

2) Why did you decide to use the metaphor of an alarm bell?
I heard the panic response described as a ‘false alarm’ and decided to develop the idea. Alarms are so intrusive and distressing when they go off too frequently and at the wrong times – just like the overpowering feelings that can take over our bodies, minds and emotions when we are stressed. I wanted to communicate something of the jarring and disruptive effect of this through the alarm bell metaphor. I also thought it would be a non- threatening way to approach this tricky subject with my young clients.

3) You have worked as a therapist and at schools with children who have emotional and behavioural difficulties. What insight has that given you into how different people’s alarm bells work?
I think the alarm bell works in the same way for all of us, though it may affect us in different ways – could be trembling, feeling sick, withdrawing, tears, swearing…
For some people the alarm bell is set off more frequently because there are more triggers; this is especially true when trauma has occurred early in life or someone has high anxiety (for example, in autism). Children who have emotional/behavioural issues often live in a state of hyper-arousal – the alarm system is on red alert. In addition to this, they may lack the maturity or capacity to process their emotions which makes life even harder.
Those who have a stable background and an ability to reflect, often find it easier to learn to manage their responses. However, even the most vulnerable can benefit from being understood and supported by people who have an appreciation of the alarm system .

4) What triggers your alarm bell, and how do you take control back when you are feeling anxious or stressed?
Aspden - help i've got an alarm bell - pg 23 -imageOver the years I have carefully considered my own triggers and where they come from.
When I was a teenager life was much harder than it is now. Like many young people I wanted to be liked and didn’t understand that sometimes others can put you down to make themselves feel better. I was often bullied. This affected my confidence and I became reluctant to speak in groups, preferring not to be noticed. When put on the spot in a group setting, my internal alarm bell would ring loudly and I would experience a sense of wanting to disappear; lots of thoughts would rush round my head about how bad the situation was, and of course, this made me feel worse. There are occasions even now when I can revisit those feelings, but I am much more equipped to deal with them.
The thing that most often sets my alarm ringing these days is ‘technology’ – when my laptop goes wrong or I don’t know how to do something because everything changes so fast and it’s hard to keep up.
If this happens, I remind myself that I am having a ‘false alarm’. It is not a real emergency.
I also use two suggestions from the book that work quickly in any situation:

  • breathing more slowly
  •  doing a simple exercise like counting things to turn the thinking part of my brain back on.

In addition, I use Mindfulness in my everyday life (a discipline which helps to bring us back to the present moment), as well as a variety of creative activities. I find these tools are very soothing for the nervous system especially in times of stress or busyness.

5) Finally, what is the most important thing you would like readers to take away from your book?
I hope that an understanding of ‘the alarm system’ will help readers to feel more in control and more able to ask for help if they need it, without feeling embarrassed. I think a lot of people struggle because they don’’t know their difficulties are physiological.
Perhaps some readers will go further and become motivated to learn more about themselves. I would be especially pleased if they were to find the benefits of creativity in calming the nervous system, but that may be a subject for a whole new book.

You can find out more about the book, read reviews or order your copy here.

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Putting restorative theory into practice

Belinda Hopkins, author of Restorative Theory in Practice, provides her unique insight into what works in restorative practice and why.

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Facilitating restorative conferences is one of the most rewarding things I do.

I can remember one of the first conferences that I facilitated on my own – many years ago now. It involved two young boys who had been playing outside their village community centre. They had been experimenting with a box of matches, some cloth and a jam jar. Young scientists at work! Suddenly they realised that it was tea-time, chucked their experiment into a nearby wheelie bin and rushed off home to tea.

A little while later, after tea, they went out to play again and noticed a kerfuffle outside the community centre. There was smoke coming from the building, sirens were heard as the fire engines arrived and a crowd was gathering. Curious to know what was happening the boys ran over and pushed their way to the front of the crowd, just opposite a window at the far end of the building – the bit furthest from the fire.

Inside was the neighbourhood police officer looking at the footage from the CCTV cameras. He glanced out of the window – and then looked back at his screen. He could hardly believe his eyes. There on the screen , he could see, crouching near the wheelie bins from which flames were to leap several minutes later and set fire to the building, huddled over something he could not make out, were the same boys whom he now saw at the front of the crowd! What luck. He went out, arrested them and they were driven away to the nearest police station – many miles away!

By the time I met the boys many months later they had had quite an adventure. Those were the days when there was no pre-meeting preparation so I met them for the first time sitting in a room with their parents, a fire officer and two members of the parish council who were responsible for the upkeep of the community centre.

The boys were timid and very remorseful – hunched like little frightened mice, the parents were tight-lipped and distressed ; suppressing a huge bundle of emotions – embarrassment, anxiety, anger, and fear. The parish councillors were incandescent and maybe also a little surprised to see that the arsonists they expected to confront were two tearful little boys of about 10.

Everyone had long and tearful stories to tell. The parents re-lived the experience of not knowing where their sons had been taken on that fateful day – only hearing from neighbours that they had been arrested – something that neither family had ever experienced before. The parish councillors shared their anger and distress at the damage to a well-loved and well-used Centre. And the boys – the boys told their story about matches, a piece of cloth and a jam jar …

And the conference worked its magic – because it felt like magic by the end – when everyone was smiling;  the parish councillors were offering ways for the boys to make amends – picking litter up around the skateboard park, helping at the local village fete – jobs the boys were only too pleased to agree to – desperate as they were to put things right and show how sorry they were.

And the Chair of the Parish council leaned forward at the end and reassured the boys that she was willing to spread the word that they were certainly not arsonists but they had been a bit silly. A message re-inforced by the fireman – playing with fire can have serious consequences – a lesson the boys were unlikely to forget.

So what was this magic that had moved people from a place of  anger, fear, shame and guilt to one of open-heartedness, collaborative problem-solving and celebration, from tears to smiles?

I simply stuck to my brief – I followed the framework I had been taught, blended with experience from having been a community mediator. I left the room metaphorically punching the air.

“It works” I crowed… And it really had felt like magic.

So now – many years later, I have had the chance to delve deeper into the magic of restorative encounters. I have invited 10 practitioners to reflect on what they think is happening as people are supported through the process to find mutually acceptable ways forward when a harmful incident has put such distance between them.

Each practitioner sees the restorative process through their own unique theoretical lens – that of Transactional Analysis, of Social Constructionism, of Constructivism, of Resonant Empathy – to name but a few of these lenses. There is no one definitive theory that explains the magic of the restorative process  but I hope people will deepen their understanding of what may be going on – as I have as editor of the book.

Learn more about Restorative Theory into Practice

Belinda Hopkins is Founder and Director of Transforming Conflict, the National Centre for Restorative Approaches in Youth Settings. She has been pioneering restorative approaches in youth settings across the UK and beyond for over 18 years. She regularly runs training courses, writes books and articles, develops training materials and speaks at conferences nationally and internationally. Belinda is the author of Just Care: Restorative Justice Approaches to Working with Children in Public Care and Just Schools: A Whole School Approach to Restorative Justice, also published by Jessica Kingsley Publishers.

Your Role as Your Child’s Advocate

Judith Canty Graves and Carson Graves are co-authors of Parents Have the Power to Make Special Education Work: An Insider Guide, and are the parents of a son with learning disabilities who is about to graduate from college. They live in Massachusetts.

As the parent of a child with special needs, one of your most9781849059701 important jobs is to be an advocate for your child in the school setting. You are vital to the success of your child’s education. You cannot be a passive observer; you need to be involved.

Here are some reasons why:

You Are the Only Permanent Member of Your Child’s Team

You are the only permanent member of the Team that decides what services and accommodations go into your child’s Individualized Education Program (IEP). New people who do not know you or your child will join the Team each fall and leave it the following spring. Occasionally a Team member might stay on for more than one school year, but most do not.

Schools Think Short Term, You Think Long Term

You and the school see your child’s education from different perspectives. In a way, this is natural since school personnel are focused on the current school year. You, on the other hand, are looking ahead to when your child becomes an adult. These different timelines can result in a source of conflict as you may want services that will help your child acquire skills needed in later years, but the school may only want to provide services that will meet more immediate needs.

As an example, students today are not given much instruction in handwriting and instead are taught keyboarding. But functional handwriting has not disappeared from the adult world. Our adult children will still have to fill out job applications or medical forms legibly by hand. Most of us are aware of other basic skills that may not have an immediate application in the classroom but which we know our children will need in later life. We have to be patient but persistent advocates for teaching these skills.

Skills Not Learned in School Have a Lasting Effect

Take the role as your child’s advocate seriously, because eventually your child will leave the public school. If he or she does not receive an appropriate education, who will help your child in a post-high school setting to balance a checkbook or fill out a job application? Many children who do not receive an appropriate education will need to take remedial courses after high school to learn skills they missed when they were younger.

What Parents Can Do

To become a better advocate for your child’s education, we recommend the following:

  • Periodically study your child’s special education documents in chronological order to better understand the progression of your child’s education. Trends will become apparent as you study the details and analyze the data over time. You must do this since Team members are transient and they don’t see the “big picture” that you can see. This exercise will show you the areas where your child has made progress or areas where he or she hasn’t.
  • Compare your child’s goals from year to year. If some goals never change, that means that either the goals aren’t appropriate or that your child isn’t making effective progress. Also compare the service delivery grid for each goal. Are the frequency and duration of services adequate to achieve the goal? If you notice that services are being decreased and the goal hasn’t been accomplished, you will want to discuss this with your Team.
  • Keep a notebook in which you record the important details of conversations you have with school personnel. If there are any action items, make them the subject of a follow-up letter or email to that person. If there are any misunderstandings about what was agreed to, this will help correct them before too much time and too many opportunities have passed. This improves positive communication with the school.
  • Keep a parent journal of your observations of your child’s experience. Record details about progress or lack of progress, and be sure to date your entries. Write in this journal on a regular basis and review it periodically. Progress almost always happens gradually, and you will only begin to see it when reviewing entries from past weeks, months, or even years.
  • Review your child’s IEP progress reports as you receive them. Compare the reports with the IEP goals and make sure these progress reports reflect your own observations as recorded in your parent journal. If these reports do not accurately describe your own observations, be sure to question these reports in writing to your child’s special education liaison. This will document your concerns.
  • Realize that every year of your child’s education matters. Time is essential in special education. If there are too many delays getting services, your child may fall behind. Each new year builds on the skills learned the previous year. It is remarkable how quickly a school year can go by and how the academic demands intensify as students advance in the grades.

Being your child’s special education advocate is an additional job for you on top of all the other things you are already doing. But it can be one of the most rewarding jobs you will ever have. Giving your child an appropriate education is an essential foundation for a productive future.

Learn more strategies for success in the Graves’ book, Parents Have the Power to Make Special Education Work: An Insider Guide. You can also discover more resources and check out their blog at their website.

Personality disorder: What about recovery?

Exploring the process of recovery from personality disorder, and how this can be achieved, Heather Castillo, author of The Reality of Recovery in Personality Disorder, provides some insight about the concept of recovery in relation to personality disorder.

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Twenty years ago, personality disorder was defined as enduring and inflexible and was usually considered untreatable.   If I had moments of doubt, regarding embarking on a study of this human puzzle, they weren’t many.  The adversity experienced by those who had attracted the diagnosis was too compelling.  The assumption that professionals know best how conditions should be defined, and how services should be configured, was a similarly popular perception at that time.

My subsequent twenty-year journey concerned research with people diagnosed with personality disorder.  Driven by the ideas and needs of service users, our ensuing service developments aimed to build a new model of understanding and progress, one which could even make the old ways obsolete.  The early 2000s proved to be a fertile time for innovation when the Department of Health invested in pilot services which allowed a kind of exploratory latitude that I have not experienced before or since.  This gave us heaven-sent liberty to create a new and very different kind of service and a golden opportunity to extend our research studies.  At this time there was no agreed rationale of recovery for those diagnosed with personality disorder and few researchers had sought the views of service users regarding this.  We wished to continue to explore research methods that incorporated subjective accounts of recovery because we believed that professionals would find little guidance about what might help recovery from a medically-oriented randomized controlled trial.

The concept of recovery essentially arose in the service user movement, however, it was an idea which was soon hijacked by mainstream services becoming a clinical concept concerned with cure.  This was experienced as an unrealistic expectation and a burden to get well.  The word recovery has different meanings suggesting that conceptual clarity is necessary.  First is the traditional concept of recovery as cure which is located within an illness framework.  Second is the personal definition of recovery which has emerged from service user narratives.  These accounts emphasize the understanding of recovery as a process that can still take place in the presence of symptoms and disability.  Recovery is about finding abilities, possibilities, interests and dreams.  This was a crucial concern for our research group members and they set out to define recovery in their own terms.  They believed that the term recovery implied returning to a previous state of being, whereas members were seeking to create a new future, the future they wanted.  Standing on the firm foundations of a clearly defined concept of personal recovery, by 2004 we had established our new service.  I have long believed that, as human beings, thriving is our default setting.  Up to now this had not proven to be the case for our service users, however, the homeliness and peacefulness of the new service and the sense of hope that permeated the air had an effect on all of us.

Living too long with untenable emotions and in a state of chronic hyper-arousal, people with a personality disorder diagnosis frequently adopt dysfunctional behaviors to numb unbearable feelings and to swiftly bring their mood down to a manageable level.  Hurting the body can create temporary calm because of endorphin release.  Such behaviors include self-harm and substance misuse.  This is how people have coped and, for many, they become deeply ingrained coping strategies.  The damaging expression of pain needs containing measures, therefore, to create psychological safety at the new service these self-destructive behaviours needed to be actively challenged.  An Acceptable Behaviour Policy was created in collaboration with service users and administered by them.  If someone broke the rules laid out in this policy there were consequences, and that person would be invited to a community discussion with peers.  During the course of our research 51 (85% of participants) discussed the use of negative coping strategies and 46 (over 76% of participants) reported a dramatic reduction in their use, suggesting that the concept of boundaries had become internalized.

Initially we were engaged in developing healthy attachment in terms of safety and trust, feeling cared for, a sense of belonging, and learning acceptable boundaries.  Next we discovered that only when this was sufficiently consolidated did service users begin to learn to contain their past experiences and build necessary skills to progress.  Meaningful therapy cannot take place, no matter how desperately it is needed, if trust does not exist and if behaviour is chaotic, risky and destructive.  Healing is about integrating experience by making sense of what has happened.  Prior to this stage, reality often proved to be unbearable and making sense out of traumatic experiences and child abuse is a difficult thing to do.  This marked the long process of beginning to re-frame traumatic experience.   However, a focus on a deficit in skills, and all that has gone wrong in the past, can create a sense of hopelessness.  Therefore, the fostering of hope and the building of confidence became vitally important in activating the internal resources necessary to conceive of and pursue dreams and goals.

Supporting recovery is about helping people to build self-esteem and identity and to find valued roles in society.  This began to translate into internal changes concerning sense of self and external achievements in the various domains of social inclusion.  However, despite progress, significant fears and barriers to the concept of recovery were also highlighted in relation to risking what progress had been made.  Because the word recovery could potentially become synonymous with the idea of loss of support, it became essential to further define it in a tenable way.  As a result, the concept of Transitional Recovery was born, meaning that progress would be defined as an ongoing journey of small steps, involving the retention of new-found healthy attachment, and new structures were incorporated into the service to help build confidence with outdoor-well-being pursuits and social inclusion initiatives.

Developments which stemmed from the  unique knowledge of service users, about what would best support them and help them to progress, shows that it is possible to work effectively with a relatively large number of people with a personality disorder diagnosis, well in excess of a hundred at one time, at different stages in their journey of recovery, many of whom had not made progress in other service settings, resulting in significant financial savings to the health, social care and the criminal justice system.

Dr Heather Castillo worked for many years in Mind organisations in Essex, developing advocacy for people with mental health problems. She has worked with service users, training and supporting them to become legitimate researchers in the field of mental health. In 2004 she helped to set up, and became the Chief Executive of The Haven Project, which began as a Department of Health National Innovation Site for the support and treatment of personality disorder. In 2011 she completed a doctorate at Anglia Ruskin University, UK, about the process of recovery in personality disorder. She lives in Essex, UK.

Learn more about The Reality of Recovery in Personality Disorder