Read the first chapter of The Essential Manual for Asperger Syndrome (ASD) in the Classroom


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Click here to read the opening chapter of Kathy Hoopmann’s incredible new teaching manual.

“If every primary/elementary school teacher read this book, the lives of all young people who have Asperger Syndrome would be significantly improved. They would at last feel that the teacher understands them and thus feel so much happier, more relaxed and better able to achieve academic and social success” – Professor Tony Attwood (author of The Complete Guide to Asperger’s Syndrome)

Professionals and teachers are raving about this exciting new resource that is rewriting the rulebook on how to teach children with an ASD. Kathy Hoopmann’s new book is the answer for time-poor teachers that need to know how to approach the teaching of a child with an autism spectrum disorder quickly and comprehensively.

You can find out more and purchase a copy of The Essential Manual for Asperger Syndrome (ASD) in the Classroom at the Jessica Kingsley Publishers website by clicking the link below:

http://www.jkp.com/uk/the-essential-manual-for-asperger-syndrome-asd-in-the-classroom.html

Ten things to consider when feeding a child with Aspergers

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Sarah Patten, author of What to Feed an Asperger: How to go from 3 foods to 300 with love, patience and a little sleight of hand, offers her top ten things for parents to consider when feeding a child that has serious sensory issues.

1. Information overload.  A child with Asperger Syndrome (ASD) is likely to scrutinize the look, texture, taste and temperature of their food.  As parents we need to remember that every feature of what they eat matters.

2. Understand food from your child’s perspective.  What looks and smells good to eat?  Find ways to get them interested in foods they currently reject but need to eat. Look at ways to engage them that don’t relate directly to taste, for example branching structures got my boy eating broccoli.

3. Just what the doctor ordered.  If restricted eating habits are an issue I would advise making a diary of what your child eats for a week and visit your GP to rule out any underlying medical problems that might be making eating unpleasant for them.

4. Can’t touch this! If your child likes food on separate plates – go with it.  Graduate to smaller plates, closer together.  Then arranged far apart on a bigger plate.  Ease into it and foods will be allowed to touch after a while on a regular-sized plate.

5. Give peace a chance.  Asperkids can absorb tension like a sponge.  Calm mealtimes make for happy eating and digestion.  Park arguments and disputes before sitting down and leave those heated ‘discussions’ for later.

6. Are they sitting comfortably?  The hardness/softness and ergonomics of a chair need consideration.  If a chair doesn’t feel right to your child, they won’t sit still and focus on their food.   Memory foam seat wedges worked for us.

7. Get foods past the screen test.  Over-analysis and rejection of coloured, multi-textured foods had my Asperger boy eating only breads, cereal and chicken breast.  But presenting lamb so it looked like chicken and adding protein rich grains, like quinoa, to bread, did the trick.

8. Creatures of habit.  For an Asperger there’s comfort in eating the same food over and over.  But set-eating patterns can be altered by introducing other habits that are better for them.  We ate a mini broccoli floret at every meal, every day until eating broccoli was a non-issue.

9. Active duty.  A sedentary child brimming with antsy-energy is unlikely to eat very well.  Getting rid of some of that energy through physical exercise is essential to building up a healthy appetite.  Finding some physical activity that they enjoy and cutting the TV screen time will help make them better eaters.

10. You are what you eat. A great diet packed with first class protein, fruit and veggies gives your child the essential minerals and vitamins they need to function and grow.  Having Asperger and neurotypical boys I see that diet affects my son with an ASD to a greater degree.  Everything about him is turned up to 11, as a family we have adapted and as a result he finds great pleasure in eating different foods now.

Patten, Sarah

Sarah Patten is the author of What to Feed an Asperger: How to go from 3 foods to 300 with love, patience and a little sleight of hand published by Jessica Kingsley Publishers

“It’s just a bit o’ banter, innit?” – Why “That’s so GAY!” still needs to be challenged

Jonathan Charlesworth is the Executive Director of the charity Educational Action Challenging Homophobia (EACH), UK, and author of That’s So Gay! - Challenging Homophobic Bullying. He has over thirty years’ teaching and training experience and regularly delivers training and consultancy on homophobic bullying, harassment and crime to schools, colleges, universities, and the police service. In this post he explains why homophobic name-calling is still a problem, and one we must work together to challenge.

“Got your little clarinet, have you? You’re so flippin’ gay, you are!” I heard this one sneered at a pupil in a corridor not so long ago. This is a fairly straightforward one with which to deal. Our ‘perpetrator’ had targeted her insult directly at another pupil and called him gay. Presumably those dishing out homophobic name-calling, perceive it to be okay for a girl to be seen carrying a clarinet but not a boy, so one must assume effeminacy equates to ‘being a girl’ with the two seen as interchangeable? There is always interesting work to be done here around sexism and gender with all our pupils and youth group attendees.

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That’s So Gay! – Challenging Homophobic Bullying, by Jonathan Charlesworth

It’s certainly easy here for a member of staff to recognise that one pupil has denigrated another and this requires an intervention or sanction. What’s harder to challenge for staff in schools or informal youth settings is the ‘victim-less crime’ of something being called ‘gay’ like homework, or a pop band (who aren’t – or can’t all be), or something intangible like the cold as in “Oh, God, this weather is so gay!”

How often have you spoken to your son or daughter about ‘calling things gay’ and they retort with, “But it’s just banter!” Or you’ve spoken to a young person if you’re a teacher or someone who works in children’s services and they fob it off as being just a ‘joke’ whilst someone who is the target of homophobic bullying and who is really worrying you misguidedly dismisses their abuse simply as ‘a bit of a drama’.

Many schools will be indicating consistently that homophobic bullying is wrong and pupils will recognise that it is unacceptable to treat someone differently because they are gay or are thought to be. Where schools often struggle is with the use of homophobic language and phrases such as ‘That’s so gay’. In these cases pupils will often not see that their actions have a direct consequence for anyone. As a result it will often be perceived as ‘harmless banter’.

Any of us who work with young people will recognise that homophobic language is frequently used without its perpetrator’s thinking and is often overlooked or even ignored because it can be difficult to know how to respond without awareness-raising or appropriate training.

I recently explained to a Deputy Headteacher in a secondary school that we were soon to see the publication of my book to help schools challenge homophobic name-calling and bullying: That’s So Gay!. “Oh, yes!” she exclaimed. “But they don’t mean anything by that, do they? They say it all the time and it more often than not has nothing to do with sexuality!” I did my best to explain diplomatically why it is important to take homophobic name-calling as seriously as racist or disablist, but by this point she was smiling at me with that look of someone who is thinking about something else and has ‘checked out’. It may come as no surprise to learn that the pupil whom I’d come to support and discuss left the school a few weeks later because of homophobia and cites being much happier in their new school.

This is just one localised example of how homophobic name-calling is regularly brushed off as ‘harmless banter’ and not thought to be particularly hurtful. Its use, and homophobia in schools in general, does need to be challenged because ignoring it absolutely allows homophobic bullying to gain a foothold, continue, then escalate.

To be borne in mind however is that a lot of pupils will be reluctant to admit that they are upset by the homophobic abuse whilst the desire not to be seen as weak or a victim can make pupils equally reluctant to report any form of bullying.

If you’re being bullied because you’re, for instance, black, Asian or Jewish in all likelihood your parents will have had several conversations in front of and with you about faith-based or racist bullying and harassment. There’s comfort at home provided by understanding, compassion and shared experience. With disability often comes the sense that it’s ‘not their fault’ and despite the ‘retard’ and ‘spaz’ insults, which have so charmingly resurfaced in recent years, pretty much every pupil acknowledges disabilist name-calling and bullying as a taboo.

Sexual orientation meanwhile is too often considered by both young people and adults alike to be a ‘choice’ rendering the gay person a legitimate ‘victim’ of their bigotry and disapproval. Gay or lesbian young people invariably also don’t have the luxury of someone at home who shares their sexuality and who can empathise with feelings of awkwardness or ‘get’ what their ostracism ‘feels like’. If you’re being bullied because you’re heterosexual but your ‘Mums’ are lesbians this can present its own set of problems.

Although young people who hold on to stereotypes may not wish to withhold equal rights from gay people they may well have their sense of who gay men and women ‘are’ skewed by television depictions and not see it as a priority or empathise with the issue.

The belief that being gay is inferior to being heterosexual leads to subtle behaviours such as jokes and vocabulary that can be very damaging to gay young people. One of the most obvious examples is the pejorative use of the word ‘gay’ among young people to describe something as worthless, wrong, dull, stupid or inferior.

Way too often pupils in school believe that reporting their bullying looks like taking it too seriously which will simply attract more abuse. We also know that too often, pupils are  not confident in the mechanisms schools put in place to respond to bullying. Similarly too many feel that their teachers will not take the problem seriously. They can also be unsure how to report if homophobic bullying is not specifically cited as unacceptable within school policies and practice.

Pupils regularly tell me and my colleagues at Educational Action Challenging Homophobia (EACH – www.each.education) about a lack of clear and consistent sanctions in school when responding to bullying. Many fear that by reporting bullying they themselves will be excluded from activities in order to avoid being targeted by their perpetrator(s). EACH regularly hears stories of targeted pupils being asked to change separately for sports lessons, physical education, or leave lessons early in order to avoid running into their tormentors.

When so much legislative progress has been made for lesbian, gay and bisexual equality, pupils might question whether co-opting the word ‘gay’ as an insult really matters. Language changes all the time and many young people will argue that calling their homework gay has nothing to do with their opinions on same-sex relationships. In fact young people who themselves identify as lesbian, gay or bisexual will use ‘That’s so gay’ in this context. For these pupils the word can have several meanings which they think has no connection to their attitudes towards themselves and other gay people. Education about historical oppression and the tremendous battle fought for equality evidently needs to be for all. There is also a chance pro-behaviour is at play here. This is when someone who is conscious of feeling ‘outside’ of society’s ‘mainstream’ deploys self-deprecating humour to divert attention away from their, for example, disability, ethnicity or sexuality. It sometimes works but to those who can see what is happening it is more often embarrassing.

If a pupil or a young person in your care uses homophobic language we should all point out the effect their language is having on other people: remembering that phrases such as ‘That’s so gay’ are not harmless banter but part of wider homophobia whether the pupil appreciates this or not. This is not just an Ofsted requirement but a moral responsibility we share collectively as part of our Duty of Care.

This article has been adapted from Jonathan Charlesworth’s That’s So Gay! – Challenging Homophobic Bullying.

Educational Action Challenging Homophobia (EACH) is the multi-award winning registered charity providing training, resources and support to affirm representations of gay and transgender people, challenge homophobia and reduce discrimination experienced because of sexual orientation or gender identity. (www.each.education)
• EACH’s National Homophobic Bullying Actionline: 0808 1000 143

Supporting young people suffering with self-harm and eating disorders – three key lessons

Pooky Knightsmith is a specialist in student mental health and emotional well-being, and author of Self-Harm and Eating Disorders in Schools. Through her company In Our Hands Ltd, Pooky works with schools, parents and organisations to promote awareness of and provide training on topics related to mental health. She is also the Mental Health and Emotional Wellbeing Advisor for the PSHE Association in the UK and a trustee for Beat, the eating disorder charity. She has personal experiences of the issues she teaches and writes about, having personally overcome eating disorders and self-harm herself.
Here she shares her top tips for supporting young people suffering with self-harm and eating disorders, gathered through years of research and training.

“How on earth have you ended up doing what you do?” A colleague questioned me today “Teaching people about self-harm and eating disorders is not exactly the kind of job you dream about when you’re 14 is it?”Knightsmith

And he was right.  I didn’t dream about doing my current job when I was 14.  In fact, I didn’t dream about anything in my future when I was 14.  All I really wanted was to be dead, but I lacked the motivation to make my ‘dream’ a reality.  I was living a half-life, walking around each day in the shadows of anorexia and self-harm.  So in answer to my colleague, I suppose that I started down the path I’m currently traversing in order to try and stop other children feeling the way I felt.

Fortunately, things have moved on somewhat from my own school days.  We have a far better understanding of self-harm and eating disorders – unfortunately that’s at least in part due to a huge increase in prevalence in both conditions which has forced us to learn, fast, and taught us some difficult lessons along the way.

I feel we’re currently at the tipping point, with schools and agencies ready, willing and increasingly able to offer support to the young people who need it most.  But what are the key lessons that we should bear in mind when offering support to young people in our care?  If I had to boil down many years of research on the topic into three key learning points (and anyone who’s attended one of my training sessions will know how keen I am on having three take home points!) it would be these:

We need to enable young people to feel in control of their own recovery

A desire to take control of one aspect of their lives is a key reason young people cite for the development of self-harming and eating disordered behaviours.  Bearing this in mind, we need to ensure that in our keenness to support young people’s recovery, that we don’t take this process straight out of their control.  Contributing to their sense of lack of control is likely to exacerbate rather than alleviate their harmful behaviours.  We can help young people to feel in control of their own recovery by employing truly person-centred practice where the young person is the key initiator in recovery goals and all information and meetings are designed to be accessible to the young person concerned.

We are stronger when we work as a team

When school staff, sufferers, parents and any external agencies involved come together and work as a team to support the recovery process with unified goals; progress is both more rapid and longer lasting.  This type of team working can be difficult to implement but it reaps dividends in terms of positive impact for the young person trying to overcome their self-harming or eating disordered behaviours.

Recovery doesn’t stop when someone looks healed

Finally, we need to ensure that support doesn’t drop off the moment someone looks physically better.  When a healthy weight has been restored or cuts or burns have healed then it’s normal for support to drop away.  Tight health budgets often mean that therapeutic or psychiatric support may dwindle at this point and parents, friends and school staff can often begin to step away feeling that the worst is over.  For the young person concerned though, this can be the most difficult phase of all as they are probably still working to overcome the underlying difficulties that drove them to their unhealthy behaviours, but they no longer have these behaviours to turn to as a means of coping.  Whilst underlying issues are being resolved and new, healthy coping mechanisms are still being embedded, young people are very vulnerable to relapse.  To minimise the likelihood of relapse, we need to ensure we extend our support, care and guidance into the weeks and months following physical recovery.

Things are looking up.  More than ever I find myself welcomed with open arms when I go to teach colleagues about how best to support the young people in their care who are facing self-harm and eating disorders.  A few short years ago there would have been no market for the book I’ve spent so long researching and writing and there would be no place for my training sessions; so taboo and under-recognised were these topics.  We’re opening our eyes to the problem and our approaches are evolving fast.  I’m hopeful that soon I’ll be able to reflect that a lot less young people are feeling like I did when I was 14.

I certainly hope so.

You can download one of Pooky’s PDF handouts, which gives alternatives to self-harm suggested by former self-harmers themselves, here

Find out more about Pooky’s book Self-Harm and Eating Disorders in Schools, read reviews or order your copy here

Call for Comic and Graphic novel submissions

Jessica Kingsley Publishers and Singing Dragon (an imprint of JKP) have recently started developing an exciting new line of comics and graphics novels and we are now open for submissions.

At JKP we are committed to publishing books that make a difference. Our range of subjects includes autism, dementia, social work, art therapies, mental health, counselling, palliative care and practical theology. Have a look on www.jkp.com for our full range of titles.

Singing Dragon publishes authoritative books on all aspects of Chinese medicine, yoga therapy, aromatherapy, massage, Qigong and complementary and alternative health more generally, as well as Oriental martial arts. Find out more on www.singingdragon.com

If you have an idea that you think would work well as a graphic book, or are an artist interested in working with us, here is what we are looking for:

Graphic novel or comic – Long form

We are looking for book proposals that are between 100 and 200 pages, black and white or colour, and explore the topics listed above or another subject that would fit into the JKP/Singing Dragon list. Specifically we are hoping to develop more personal autobiographical stories.

Here are the guidelines for submission:

  1. A one-page written synopsis detailing the plot/outline of the book, as well as short bios of all the creators involved.
  2. Character sketches of the main characters with descriptions.
  3. Solo artist/writers or writer and artist teams should submit 5 to 10 completed pages to allow us to get a sense of the pace, art style and writing.
  4. Solo writers will need to submit 10 to 20 pages of script as well as the one-page synopsis from point 1.

Comic – Short form

We have some shorter comic projects underway and are looking to expand the range of topics covered. These books can run from 20 to 40 pages, black and white or colour, with dimensions of 170x230mm. We are mainly looking for comics that provide ideas and information for both professionals and general readers.

For example, the first in this series, published by Singing Dragon, is a book exploring the latest developments in chronic pain research.

Here are the guidelines for submission:

  1. A one-page written synopsis detailing the narrative style and subject matter to be explored in the book. Also include short bios of all the creators involved.
  2. Solo artist/writers or writer and artist teams should submit 3 to 5 completed pages to allow us to get a sense of the pace, art style and writing.
  3. Solo writers will need to submit 5 to 10 pages of script as well as the one-page synopsis from point 1.

When submitting please provide low-res images and send them, along with everything else, to Mike Medaglia at mike.medaglia@jkp.com

If you have any other ideas that don’t directly relate to the subjects described above but you feel might still fit into the JKP or Singing Dragon list, please feel free to get in touch with ideas and enquiries on the email above.

All Things Poop

JKP author Kate Wilde, Director of The Son-Rise Program®, shares advice on a key problem area for parents raising a child on the autism spectrum.

“Feces, bowel movement, Number 2, stool, excrement are just a few of the many names we give to what everyone does…poop. Our children on the autism spectrum can be very protective about where and how they poop. They can push us away, preferring to poop by themselves alone in a corner. They can hold it in for hours and even days. Our children may pee on the toilet happily and easily but will only poop in a diaper. They may like to eat it or smear it. When it comes to poop our children can give us some interesting challenges to tackle. Below are two perspectives to adopt while we help them acquire the skill of pooping in the toilet.

  1. Embrace the way your child poops or interacts with poop.

Some of you may be thinking.That’s crazy—I can’t embrace poop—it is smelly and disgusting that’s just a fact.’  Well actually it’s not a fact but a perspective. Poop is neither disgusting nor is it wonderful, it is just poop. We then put our own perspective on it. We get to choose how we want to think about it. I worked with a lovely and lively boy with autism who would pick his poop piece by piece out of his bottom with his finger, then try and give it to the nearest person. As you can imagine, this was not well received by the people in his life. His parents, understandably, did not like it when he did this and dreaded his pooping each day. They felt like they had tried everything to help him change and nothing had made even the slightest difference. They visited my center, The Autism treatment Center of America®, we helped them first feel comfortable and embrace the way he pooped. When we worked with this boy everything we did with him came from a deep sense of embracing and loving him. The way he pooped was part of him also, so of course we embraced this too. When he picked some poop out of his bottom and offered it to us, we celebrated him and thanked him for giving us his poop and lovingly wiped his finger with a piece of tissue. We then told him that he could give it to us anytime and we would gladly wipe it off it finger. We did not run from it, or scold him, or tell him no, or put him in time out or ask him to do it differently. We embraced the way he did it. From this alone he stopped pooping in this way in just 1.5 days. It turned out that he was doing it because of the big reactions he was getting from the adults around him. Offering people his poop had also become a good way to get people to leave him alone. Once he realized that we were not going to leave, and we did not give the big “don’t do that” reactions he stopped. When we embrace something we move towards it and learn much more about it. It is the first step to finding reasons behind why our children are doing a particular behavior.

2. Your child is doing the best that they can.

At times you might think that your child is just being difficult or naughty. You might say to yourself, Well if he can pee on the toilet then he can poop on the toilet,’ or ‘He knows I do not like it when he smears, he is just doing that to spite me.’ I understand that it may seem like that at times, but it really is not the case. A lot of our children have different sensory challenges, the way they experience the world through their senses is so different than ours. Pooping can be an intense sensory experience for us Neuro Typical adults—I can only imagine that it is a thousand times more intense for some of our children on the spectrum. Our children also have a lot of digestive challenges. If your child is a picky eater or limits their diet to only a few items, or has chronic diarrhea or constipation, these are signs of a possible digestive challenge. If this is the case for your child it could mean that they find the process of digesting and eliminating food painful at times. Their controlling ways around pooping could just be their way of taking care of themselves, and getting through the process in a way that is the easiest for them. It is not an attempt at being naughty or challenging your authority. Let go of any feelings that your child is being naughty or mischievous. This will allow you to view the situation with more clarity and possibly see what is really going on for your child so that you can help them in the best way.

With these two perspectives and attitudes, any action we adopt to help our children with their pooping challenges will have more clarity and be more effective. In my book Autistic Logistics, I not only share concrete step-by-step directions on how to deal with the pooping challenges mentioned above but also cover other toilet training topics, sleeping challenges, tantrums, hitting issues and many more everyday challenges we face while parenting our children on the autism spectrum.”

Now available for purchase, click here.

Put the Fun Back into Tooth Brushing

JKP author Kate Wilde, Director of The Son-Rise Program®, shares tips from her forthcoming book, Autistic Logistics, on helping your spectrum child enjoy brushing his or her teeth.

Our children on the autism spectrum are no different from us in that they too move toward and want to do activities that are fun! Below are four steps that will help you help your child master the skill of cleaning their teeth.

  1. Take the stress out of the equation by letting go of the outcome. Everything we do with our child matters. What we think and feel is communicated to our children in so many different ways. In the tone of our voice, the touch of our hand and the softness or hardness of our facial expressions. Does the thought of cleaning your child’s teeth fill you with dread and stress, or fun and delight? Is it something you just want to get over and done with so that the real fun of playing can happen? If it fills you with dread then the first place to start is let go of the outcome of actually getting your child’s teeth cleaned and focus instead on enjoying the process. How can our children begin to enjoy this process if we do not? Try letting go of the outcome of actually getting your child’s teeth brushed just for a couple of days, and instead focus on making it as fun as possible for you and your child. You have nothing to lose by trying this and everything to gain.
  2.  Find two things to love about the process of brushing teeth. When we love something we tend to be more enthusiastic, the more enthusiastic we are the more inviting we will be in encouraging our children to move toward and enjoy the process of cleaning their teeth. There are so many things to love! We have the toothbrush itself—many amazing toothbrushes on the market—buy one YOU love. The way our teeth feel after they have been cleaned—all smooth and fresh. The minty sweet taste of the toothpaste. Get into it! Then express the sincere love you have of the process to your child. Tell them about the delicious taste of the toothpaste, or the awesomeness of your toothbrush. Sell the process.
  3. Model the joy of cleaning your teeth. Once you have your own things to love about cleaning your teeth, then clean your teeth in a joyous “over the top” way in front of your child. It is ok if your child is not looking at you or seemingly interested in what you are doing. Know that if they are in the room they are taking in some part of what you are doing. Have a blast showing your child how great it is to clean your own teeth.
  4. Make it fun for your child. Do this by adding what your child loves most to their tooth brushing experience. This is the key to making it especially fun to your child. Each of our children have their own unique interest and things that they particularly love. Put what your child loves most at the center. For example, if your child loves a particular character such as Thomas the Tank Engine, bring Thomas along and clean his teeth too. Get a tooth brush with Thomas on it. Create a train track with masking tape on the bathroom floor that leads to the sink where the toothbrush and toothpaste are waiting. If your child loves to watch ribbons and pieces of string dangle, wrap string and ribbon around their toothbrush to make it more inviting for them. If your child has a special topic of conversation that they love to talk about, incorporate that topic of conversation into tooth brushing. For example if their topic is about Austin Powers dance like him as you brush their teeth and say, “Cleaning teeth is Groovy” in an Austin Powers accent. If their topic is about different kinds of weather, pretend you are trying to clean their teeth in the middle of a tornado or snow storm.

For more ideas on how to inspire your child to love cleaning their own teeth or other everyday skills, read my book Autistic Logistics. Available January 21st, 2015.

The Feelings Tree – helping children talk about emotions

The holidays are often filled with an assortment of powerful emotions, for both children and adults. This can be related to loss or upheaval in our lives, to anniversaries of significant loss, or simply because the holiday period allows time for reflection which can bring up difficult feelings for us all. So we wanted to share a free activity from the lovely Seeds of Hope Bereavement and Loss Activity Book, which aims to help children deal Jay_Seeds-of-Hope-B_978-1-84905-546-8_colourjpg-printwith loss and/or change through nature, and will be especially helpful to those finding it difficult to cope with bereavement.

The Feelings Tree is a great activity to help you get started talking to children about difficult emotions, as well as all emotions more generally. The birds in the tree can be used as starting points to bring up difficult feelings you may want to talk about, or the child you’re doing the activity with may use the opportunity to talk about emotions they don’t feel comfortable addressing head-on. However you use The Feelings Tree you’re sure to have some fun!

Download The Feelings Tree here

Read an interview with the author, Caroline Jay, on what inspired her to write the book and how contact with nature can help us deal with loss, here.

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

Catching up with Ann Andrews – inspirational author of Positively Parkinson’s

Ann Andrews worked as a television and theatre producer, researcher, teacher and crisis counsellor. She was diagnosed with Parkinson’s in her fifties, and went on to write the informative, practical and inspiring guide to living well with Parkinson’s; Positively Parkinson’s.  We caught up with Ann to find out what she’s been up to since the publication of her book, how she’s managing her Parkinson’s symptoms now, and what she’s looking forward to in the future.

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Ann speaking to fellow Parkinson’s sufferers

Since the publishing of Positively Parkinson’s I have travelled through most of the North Island and some of the South Island of  New Zealand talking to groups of people with Parkinson’s. In doing so I have met people from all over the World and everyone has told me how important the book has been for them. It seems to have achieved what I most wanted it to do:  help us all have a better understanding of Parkinson’s and to become a do-it-yourself guide to helping ourselves stay well.

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Ann at a signing session

I went to New York last year and am going back again this Christmas. We have a daughter there and a delightful about-to-be-two-years old grandson. While I was there I tried to promote the book which is published in the United States with the title I have Parkinson’s. What should I do? I found not many people had heard of it. However, I got to know a great group of Parkinsonian’s, members of a Brooklyn group.

A couple of years earlier a NY dance company had visited Auckland and offered dance lessons for people with Parkinson’s. They were called the Mark Morris Dance Company. One of the dancers John Heginbotham features in Positively Parkinson’s (page 126). While in NY I got in touch with John and another dancer David Leventhal, and was thrilled to be invited to a dance lesson at the home of Mark Morris Dance.

John was about to leave to join the same dance company in San Francisco and I was able to be there for his last lesson. In doing so I met the Brooklyn group. I was fortunate in being able to attend about five dance lessons with David Leventhal and student members of the dance company.

Pamela and Ann chatting at Mark Morris NY, December 2012

Pamela and Ann chatting at Mark Morris NY, December 2012

I describe the New Zealand lesson in my book (page 127) but being there at the home of the dance company was very special. As well as dance lessons I went to some movement lessons with Pamela Quinn, a dancer who has early onset Parkinson’s. She is so fit I found it difficult to keep up with her in class, though most of the other members seemed to be able to.

You can see her and some of her exercises on YouTube.  If you would like to know more about the dance lessons you could get in touch with Maria Portman-Kelly who manages the Parkinson’s classes at the Mark Morris Dance School.

What these classes also achieve is to provide a meeting place for people with Parkinson’s. Attending class once or twice a week at Mark Morris or the Juliana School at the Lincoln Centre means New Yorkers can meet for coffee and a chat as well as exercise.

Ann reading her new children's story book

Ann reading her new children’s story book

This year I have written a bright picture book for children and grandchildren of someone who has Parkinson’s; a child’s guide. Called Grandma’s Brain, it is illustrated with drawings of me and my grandsons, my brain, a young space traveller and space pirates.  My son, a magazine publisher, is publishing the book which will be available sometime early in 2015. By then I hope to also have a website. The story is meant for children aged between 5 and 12 to read themselves or be read to. It is light, humorous, entertaining, yet informative and is colourfully illustrated. Look out for it!

In the last year I have had a few falls and my balance is not what it used to be. It has been both an eye-opener and a wake-up call.  I now use a hiking stick when out and about. I find friends and family very quick to offer an arm, which is nice and I take it without demur.

More of my friends have now had the deep brain stimulation operation, one as young as 43. They seem a lot better and have been able to reduce their medicine intake.  There is also a very different research programme here in Auckland which utilises the same initial brain operation, but for quite a different reason. I’ll try and explain it: To begin with… On an island in the Auckland islands group (far south of NZ into Antarctic waters) some pigs were left about two hundred years ago. Because of their isolation they have developed into a healthy virus free herd. Some of these pigs now live in a separate isolated location in New Zealand.

Pig tissue has been used successfully in medical treatments for many years, but this research is about pig cells. The programme entails removing some choroid plexus cells from deep within the pig’s brain. The choroid plexus in all brains releases a growth factor that repairs cells and makes nerves grow. Obviously we can’t transplant human choroid factor cells but we can use those from pigs, especially virus free pigs.

To inhibit the immune system from rejecting the pig cells they are placed in tiny capsules rather like Goretex which shield the cells while letting nutrients in and growth factors out. The treatment involves surgically placing the cells into the brain to encourage the nerves that have died back to regrow. A group of six people with Parkinson’s are taking part in this research. They will be assessed carefully and if there is no improvement after six months they will be offered the alternative deep brain stimulation.

I have tried to think of anything I particularly wanted to add to Positively Parkinson’s. There have been things that occurred to me, but which I can’t remember at this moment. I’m still experimenting. I have been on a course of hormone Andrews_Positively-Park_978-1-84905-411-9_colourjpg-printreplacement which is supposed to help me remember things. I’m not sure it does, but six months on my memory does seem better. I’m sure one of the most helpful things you can do is keep working on yourself. Hold a constant dialogue with your brain. Tell it to take bigger steps, make a bigger voice and do the exercise you’ve been putting off.

One group I don’t mention in the book is the nurses working in homes for the elderly. I have talked to a number of them and found they had little understanding of Parkinson’s in the people they were caring for. They had no idea that it could be the cause of a mask-like face, the inability to smile and the lack of a voice; with the result that many of them misjudged their patients completely.  To me this is dreadful.  I have tried to impress on them that this kind of ignorance would be what people with Parkinson’s fear most.

Not a good ending. On a positive note I’ve just completed another Lee Silverman Voice Training Programme and found I had slipped back by not practising at home enough. I’ve tried LSVT Big from a useful YouTube programme called LSVT Big home exercise video. It’s expensive to learn the complete programme here so I add some of the video exercises to the same ones I have in the book.  I have added weights to try and keep my muscle tone and then, of course, I have my new exercycle which I can ride inside when the weather is not conducive for walking.

So, think big, think positive and keep doing everything you can. Your brain will find new pathways.

Ann Andrews.

Find out more about Ann’s book, read reviews or order your copy here