Preparation for Independence—Is Your Student Ready for a New School Year?

Christy Oslund, Co-ordinator of Student Disability Services in the Dean of the Students’ Office at Michigan Technological University, shares helpful tips for parents on preparing students for a new school year and future independence.

Preparation for Independence

As students gear up for another year of school—perhaps even their last year or two before heading off to college or other independent goals—families tend to get caught up in last minute preparations. Do they have adequate school supplies, is it time to buy a scientific calculator, what will the schedule look like for classes and for after school activities? It is easy to get buried in details.

We need to remind ourselves to step back and remember the big picture. We need to help our students be prepared not just for the immediate school term but for the future when they will be required to live more independently. Consider the following questions:

  • Is my child able to take their medication reliably without reminders?
  • Does my child know how to wash their own laundry?
  • Could my child go shopping alone and find their own basic necessities?
  • Have we practiced the child getting up and ready for school without assistance/wake-up calls?
  • Has my child learned to shop for and cook a few simple meals?
  • Can my child wash up after preparing a meal?

Until a person has had the opportunity to practice all these steps towards independence, he or she is not really ready for life away from home, whether that be in a trade school, college, university, or first job. Particularly with high functioning children who are very smart, we can easily forget how important these other day to day life skills are for the young person to grow into a successful adult. Rather than trying to take on teaching all of these skills at once, consider working on them one at a time. It will depend on your child which of these steps will come easiest and which will require the most work.

Consider starting with the step that is likely to be the least difficult for the individual child you are working with, so that your student can build on success as they approach the next goal. If for example, your child is naturally starting to get up in the morning for school, allow that to become an independent activity where he or she is responsible for getting out of the home on time. Realize that this may mean that your child will be late a few times; this is the price that has to be paid in helping your student work towards independence. Once your child leaves home, there will not be anyone getting them out the door on time and this is a skill that is best learned before they are expected to act like an adult.

On the other hand, if your child has shown an interest in cooking, help them identify a few simple meals they would like to cook. Take them shopping and walk them through the process of choosing ingredients for the meal, paying, taking home the shopping, and preparation. For young people who find that process very involved, you may want to make clean up after the meal a separate lesson and learning opportunity.

Remember that almost everyone finds the most effective way to learn is to be given a chance for practice, with necessary explanation/information being provided by someone who has more experience with the skill being learned. If one wants to learn to milk a cow, one would look for a dairy farmer who has experience with milking; if one wants to learn to cook a meal, it helps if the person teaching has cooked before.

At the same time, parents and guardians can show the willingness to learn new skills themselves. If no one in the home is practiced at cooking a meal then helping the child prepare by learning this skill together—perhaps in a basic cooking class, or from a beginners cook book—demonstrates that learning new skills is always possible, and often necessary, no matter what stage we are at in life. By learning side by side with your child, you can demonstrate how to solve problems along the way:

  • How will we prepare for shopping?
  • How do we choose ingredients?
  • How do we decide which pan to use?
  • How can we tell if the heat we are using is too hot or not hot enough?

When more mature family members demonstrate how to solve problems as they are encountered, they also set another example that the child can learn from and call on later in life.

A new school year is an exciting, anxiety producing time of year. It is also a reminder that a child is continuing to grow towards eventual independence. Being mindful to include education and practice with the life skills needed outside of school is just as important as helping a child academically prepare for their future. Just as we wouldn’t expect a child to spontaneously start reading without previous education just because they have left home, we cannot expect them to suddenly know other life skills such as cooking, or getting up without reminders, just because they’ve moved. Use each day to practice these steps towards independence and you can ensure that your child has all the skills necessary to be successful.

Christy is the author of  Succeeding as a Student in the STEM Fields with an Invisible Disability: A College Handbook for Science, Technology, Engineering, and Math Students with Autism, ADD, Affective Disorders, or Learning Difficulties and their Families and the forthcoming  Supporting College and University Students with Invisible Disabilities: A Guide for Faculty and Staff Working with Students with Autism, AD/HD, Language Processing Disorders, Anxiety, and Mental Illness both published by Jessica Kingsley Publishers.

New Video – Sue Cottrell talks to her son Lloyd about learning to control his stammer

In this video Sue Cottrell, author of Can I tell you about Stammering/Stuttering?, talks to her 15 year-old son Lloyd about how his stammer affects his daily life, particularly at school whilst he is feeling stressed about exams. Lloyd reflects on footage of himself speaking as a 13 year-old and discusses how the techniques he has learned since have enabled him to control his stammer and become a more confident speaker.

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Tony Attwood and Michelle Garnett explain new affection programme

World leading experts on autism spectrum disorders Tony Attwood and Michelle Garnett have recently published their new books on helping children and young people with ASD understand and express affection.

So what is the affection programme and how can it help me?

The parent programme: Attwood-Garnett_From-Like-to-Lo_978-1-84905-436-2_colourjpg-web

Children with ASD often find expressing affection difficult, for them it’s not a hug, it’s a squeeze and this can be profoundly distressing for parents. The affection programme is designed to help children understand why we express affection and help them become more confident in expressing their own feelings of like or love.  The workbook is packed full of practical activities to work through as a family including investigating an alien species, scrapbooking and making personalised compliment diaries. By the end of the programme children will not only understand affection but be able to open up and enjoy expressing their own feelings of affection to friends and family.

Watch this video to see how Tony Attwood’s first ever participant Virginia felt about affection before and after.

The parent programme is now available as a workbook: From Like to Love for Young People with Asperger’s Syndrome (Autism Spectrum Disorder).

The professional programme: Attwood-Garnett_CBT-to-Help-You_978-1-84905-412-6_colourjpg-web

The professional programme is designed to help those working with children with ASD. Centred around encouraging children to understand affection, the programme aims to help young people become confident in receiving affection and able to express their own feelings of like or love. The programme also outlines and establishes the boundaries of appropriate levels of affection which can help to prevent issues in adolescence and beyond.  In this video Michelle Garnett explains the programme to an audience at the Mind and It’s Potential Conference, Sydney.

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The professional programme, CBT to Help Young People with Asperger’s Syndrome (Autism Spectrum Disorder) to Understand and Express Affection is now available.

From Like to Love for Young People with Asperger’s Syndrome (Autism Spectrum Disorder) and CBT to Help Young People with Asperger’s Syndrome (Autism Spectrum Disorder) to Understand and Express Affection by Tony Attwood and Michelle Garnett are published by Jessica Kingsley Publishers 2013.

Tips on Transitioning to the Flexibility of Summer for Children with Special Needs from JKP author and Occupational Therapist Cara Koscinski

SUMMER!

It’s here! Most families look forward to summer relaxation and lazy days. However, the lack of routine and structure can be the cause of great stress for families of children with special needs. School routines are predictable and provide consistency.  The transition to summer and its freedom may be a difficult one. In addition, the skills your child has gained in school should be carried over into the summer to stop any regression. Feeling overwhelmed? Need ideas that are therapeutic and fun?

NEVER FEAR……THE POCKET OCCUPATIONAL THERAPIST is here!!

Try to keep a routine. Look at the calendar together and make a routine for your family. Include your child in choosing family activities.  Let him choose the colors that you’ll write with on the calendar. Post a list of daily schedules and chores with check off boxes. Include chores such as vacuuming the floor and cleaning windows (both great for heavy work).  Schedule new activities well ahead of time and be sure to prepare for them. Visit summer camp sites prior to camp, meet counselors before camp begins, and take pictures of camp locations. Make a memory booklet and encourage your child to write in a journal about his summer activities. If he’s not writing yet, ask him to draw pictures. This will be a great keepsake!

Schedule as many play dates as possible. Extended family and cousins may also be off of school and need to keep busy too. Play games together such as making up your own circus. Walk a taped line imitating a tightrope, learn to juggle, and pretend to walk like different animals in the circus. You can also pretend to make a zoo, jungle, or go on safari.  Walking on all fours to imitate a bear, lion, tiger, dog, or any other animal is great for proprioceptive (heavy work) input.

Make a parade with homemade instruments. Visit our Pinterest board for ideas on how to make your own instruments out of paper plates, oat containers, and paper towel rolls. Marching to different rhythms is a fun way to work on proprioceptive input and body coordination.

Play charades and act out different sports or occupations. This is a great activity to do as a family or during a play date. For an added challenge, act out different emotions.

Draw letters and numbers using only your fingers on your child’s back.  Ask him to guess what you are drawing.  Let him practice on your back too.

Tape a line on the floor and ask your child to jump in different ways over it.  For example, hop with your right foot on the left side of the line.  Jump three times on the right of the line.  Use the line as a pretend balance beam.

Describe each letter of the alphabet by the shapes that make it up.  For example, letter H is two big lines and one dash.  Letter A is like two sliding boards back to back with a dash in the middle.  Take one letter per day and make it the letter of the day.  Draw that letter throughout the day in sand, shaving crème, on sand paper, in salt, and on paper with pencil or paint.  Find things that start with that letter and place them into a paper bag.

Cross crawling is a great activity to help in right/left coordination and visual motor skills. Crawl by moving one arm and the opposite leg (right arm/left leg) and then switch (left arm/right leg). Try giving your child directional commands such as: “Touch your left ear with your right hand.” Be creative and encourage your child to give you directions as well. Sometimes, playing the teacher is empowering!

Evening activities at dusk are fun too. Go on a flashlight scavenger hunt with your child. Use a flashlight to draw different letters and numbers on the ground. Use glow sticks to write letters in the air. Add glow stick liquid to bubbles and have a bubble blowing competition.

Use sidewalk chalk on the concrete or on your trampoline. Ask your child to jump to the letter you call out.

Walk like a wheelbarrow in the grass. Hold your child’s ankles, knees, or thighs and ask him to “walk” on his hands. Remember that holding your child’s ankles is the most difficult challenge for him.  You can place different things such as bean bags or play tools onto his back to “transport” items like a real wheelbarrow does. This is an EXCELLENT activity to add into any sensory diet. It is filled with proprioceptive input/heavy work.

Hop scotch, jumping rope, and learning to ride a bicycle are always super summer activities.

Use a spray bottle to spray plants. Squirting each other on a hot day is a fun way to cool down while building hand strength!

Fine motor tasks such as bead stringing, macramé, puzzles, hunting for treasure in different sensory bins, card games, marbles, making letters in sand and shaving crème, jacks are all great ways to build fine motor skills.

Painting with different items such as leaves, sticks, or cotton balls is fun. Adding tweezers to any task builds fine motor coordination. Instead of picking up cotton balls with his fingers, use tweezers!

If your child has difficulty catching a hard ball such as a baseball, use a wiffleball which will move slower and is easier to catch. Playing mini-golf with plastic golf balls is a fun way to build skills without the danger of a real golf ball flying through the yard.

Make a book. Cut old magazines and paste pictures on to a book made of construction paper and bound with yarn. Write stories about the pictures or make your own. Even punching the holes (through which to bind the book) with the hole puncher is a great fine motor activity.

Make a game of feel and guess. Use an old shoebox and cut a hole for your child’s hand to fit into. Place an item such as a leaf into the box and ask your child to tell you what the item is just by the way it feels. This can be done every season and with many objects such as stones, ice cubes, and seeds.

Make puppets out of old socks and felt. Put on a puppet show for friends or family.

Give your child a treasure hunt list with items such as a butterfly, cloud shaped like a certain animal, or sound of a certain bird’s chirp. This should be a multi-sensory treasure hunt involving eyes, ears, touch, and smell.

Plan snacks that relate to different books. Examples include: Blue Berries for Sal, Stone Soup, and Bread and Jam for Frances.

Set up a store selling different summer items such as beach toys, summer fruits, and vegetables. Encourage your child to make signs for each item and practice making change when something is purchased.

Use old sheets and blankets to make tents. Go camping in your living room!

Finally, plant seeds and watch them grow. Move them from small pots or paper cups into a garden area. Chart their growth in a notebook. Encourage your child to help you with the responsibilities of watering her garden and re-potting when necessary. Caring for something such as a plant can empower a child.

Make sure to read a great book together (Don’t forget about reading and recommending The Pocket Occupational Therapist for families of children with special needs).

Most of all, HAVE FUN together! You never know when you are making a memory that your child will have for the rest of his life!

By  Cara Koscinski MOT, OTR/L

Author of The Pocket Occupational Therapist—a handbook for caregivers of children with special needs. Questions and answers most frequently asked to OTs with easy to understand answers and fun activities you can do with your child.  It’s like having your OT with you everywhere! Published by Jessica Kingsley Publishers, 2012. For more information on Cara Koscinski,  visit her website at www.pocketot.com.

The challenges and rewards of teaching teens with complex needs

Andrew Colley, author of forthcoming, Personalised Learning for Young People with Profound and Multiple Learning Difficulties, discusses his role as a teacher of teenagers with complex needs and explains what motivated him to write the book. Colley_Personalised-Le_978-1-84905-367-9_colourjpg-web

I decided to write my book ‘Personalised Learning for Young People with Profound and Multiple Learning Difficulties’ because I wanted to answer a question.  It was a question I had been asked quite often, usually by people I knew. Quite intelligent and sensitive people. Friends and colleagues even.

They usually asked it after I had described to them some of the young people I taught. Young people aged between about 14 and 19. Most of them didn’t speak. Some didn’t move very much either.  Some had life-limiting conditions. Some were autistic. Some had epilepsy so severe that they needed to be watched 24 hours a day. Some didn’t even recognise their own parents.  Some behaved in extremely challenging ways: biting, hitting, spitting, self harming. None of them would ever have jobs or marriages, or maybe even close friends. All would be cared for the rest of their lives.

The question I was often asked was this:  ‘What do you actually teach them?’

It wasn’t an easy question because teaching these young people wasn’t easy either. In fact, it was the most challenging, exciting, draining, fascinating and complex sort of teaching I had ever experienced.

The question ‘What do you actually teach them?’ throws up many more questions than answers:  How do you actually teach them?  How do you get to know each one well enough to be able to support their learning and development?  How do you manage behaviour so extreme that it seems to get in the way of any form of learning? What is actually meant in a situation like this by words we take for granted? Words like ‘teaching’, ‘learning’ and ‘curriculum’.  What is a lesson? What is a classroom? How do you arrange the classroom?  How do you manage the staff team? What does the timetable look like? How can you actually tell if learning has taken place? And possibly most important of all: how do you prepare each of them for what we hope will be a long adult life?

So I decided to write a book to try to answer as many of these questions as I could.  And because the young people I had been working with were so fascinating, complex and individual, I decided to make them the stars of the show, the core of the book. Their lives, their behaviour, their personalities. The things they do and how they do them. It was a challenge to write, but then so it should be. It’s a challenging job.

The answer to the original question though, turned out to be relatively straightforward after all. ‘What do you actually teach them?’  It was an answer I had heard many times from the mouths of the parents and carers of these young people. It was an answer to a different question though. A question I had asked many times myself.

‘What do you want for your son or daughter?’

I noticed that the answer was always more or less the same. They wanted their son or daughter to be happy, to communicate as well as he or she can, and to be as independent as possible. ‘The Three Big Things’, I call them. To be happy. To communicate a little better and to be as independent as possible.

That’s what I try to teach them. The book is about how to do that.

Andrew Colley is the author of Personalised Learning for Young People with Profound and Multiple Learning Difficulties published by Jessica Kingsley Publishers.

Coming to terms with your Parkinson’s diagnosis – an extract from ‘Positively Parkinson’s.’

Here in the UK we’ve just received our copies of Positively Parkinson’s, and we wanted to share an extract of this inspiring book with you.

cover image

‘Positively Parkinson’s’ by Ann Andrews

This extract looks at coming to terms with a diagnosis of Parkinson’s, including examples of how the author Ann Andrews, as well as others, managed to accept their diagnosis, and what helped them to do so. Click on the link below to read the full extract.

Ann Andrews – Positively Parkinson’s – extract

Visit our website to get additional information or to order your copy of Positively Parkinson’s.

 

JKP author Cara Koscinski Highlights the Importance of Play in Occupational Therapy

JKP author Cara Koscinski MOT, OTR/L, The Pocket Occupational Therapist for Families of Children With Special Needs, explains how play can benefit your special needs child.

Occupational Therapy, Developing Skills Through Play

Occupational therapists are fortunate enough to be a critical part of the treatment team for children with special needs.   Any difficulties children may face as a result of having a developmental delay should be addressed by incorporating play into their daily routine.  While working with the adult population, occupational therapists focus on remediating skills for daily living and for work related tasks.  When assessing the skills of children, the therapist must look at the child’s play skills.  After all, when children are not asleep they are learning about their environment through the various play activities they engage in during their day.  Even completing the tasks of building blocks, completing a puzzle, and drawing pictures will yield skills that the child will use throughout his lifetime.

When caregivers attend occupational therapy sessions, most inevitably ask, “Why does it look like you are playing during the session?  How is this therapy?”  The occupational therapist should explain therapy goals and how she will work to achieve them during the course of therapy.  It is important for caregivers to feel comfortable asking questions about activities to complete at home to help to facilitate therapy progress.  Most caregivers want to help their child to achieve his goals and are willing to participate if given the chance.  It is by asking questions and through home programs given by the therapist that caregivers can be key partners in a child’s success on building skills that will propel him through his lifetime.

The most important thing to remember when working with your child at home is to begin at a level where he can be successful.  Each success will help to build his confidence. No one wants to fail at a task and oftentimes, a child with special needs may lack the confidence to re-try something at which he has previously failed.  Be sure to watch your child as he plays to determine which activities he prefers.  For example, note if he prefers to engage in messy play or dry play.  Does he enjoy colors, shapes, letters, or numbers?  When seeking items for your home play time, be sure to remember his favorite color or movie character.  His excitement will help him to have fun while learning.

Fine-motor coordination involves tasks of the hands and fingers such as holding a writing utensil, using a fork, buttoning, and shoe-tying.   It is a good idea to help your child to strengthen his fingers for these tasks.  Set up activities that you know he will enjoy and have success with.  There are many different types of dough recipes that can be found on the internet.  Make some dough and add his favorite color to it with a small amount of food coloring or add glitter.  Mix two different colors of dough together and see what colors you can make.  The addition of different scented oils can heighten the activity to a new sensory level.  Peppermint and vanilla oils are commonly found at the grocery store.  Note which scents your child prefers.

Most children love to open and close things.  Be sure to save containers of all shapes and sizes. After cleaning them out, place a special prize inside.  Ask your child to open each and find the prize.  Prizes can be food, pom-poms, treats, or anything that will be motivating for him.  Cut a slit in the top of the lid and ask him to put coins or bingo chips inside the container.  This will give him the opportunity to develop good coordination skills.  Also, use different eye-droppers or a turkey baster to transfer colored water from cup to cup.  Switch from hand to hand or have a race to see who can fill the cup up first.

Gross-motor coordination and building up a strong core muscle system will be key factors in determining success with future activities such as bicycle riding, hopping, and playing sports in the future.  Even when children are infants, supervised tummy time is important to help muscles work against gravity.  Place a motivating object near baby so that he has to lift his head to see it.  Use lots of praise and encouragement.  To help develop core muscle strength as children get older, it is important to revisit tummy time.  Ask your child to watch a small portion of his favorite television show while lying on his belly.  As he gets stronger build up the time.  Pretending to be animals like snakes crawling in the grasslands is a fun game for older kids.

Crawling is a stage often missed by children with developmental delays.  The act of crawling helps to strengthens muscles, works to help to integrate the sensory system, and develops coordination of the arms and legs.  Often, we need to give extra help to learn to navigate their bodies in the quadruped, or crawling, position.   We can get down on the floor with our children and crawl together through mazes made of cushions; under tables; and along paths taped with masking tape.  Make sure to encourage fun so that your child doesn’t realize he’s working on skills that may be difficult for him.  Allow him to rest when he needs to.

Oral-motor skills are critical to eating, drinking, and speech.  Often times the local thrift store is full of affordable tools for building strength in the muscles of the mouth.  Straws of different shapes and diameters should be used for drinking or blowing bubbles into a pan of water.  Have races by blowing cotton balls and other light items off of the table.  The use of age-appropriate whistles is a fun way to get immediate reward as the child learns to produce sounds by blowing.  Place whipped crème onto the child’s lips and ask him to look into a mirror and use his tongue to lick it all off.  This will help him to strengthen the tongue muscles and become more aware of its movements.  Try it with him and have a race.  Use different tastes and textures such as chocolate syrup.

As you think about your child, keep in mind that he is a child first and he learns critical skills through playing.  It will benefit him many fold if you provide him with opportunities to work on his areas of weaknesses while he has fun doing so. The memories and skills you build together will last a lifetime.

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 cetmd@earthlink.net for more information.

Copyright © Jessica Kingsley Publishers 2012.