Learning that you are helpless…then unlearning it again!

I am the mother of a 7-year-old daughter with Rett Syndrome. Since she was diagnosed, nearly four years ago, I have tried my best to use my training as a psychologist, researcher and complementary therapist to help manage the difficulties of life with Rett where possible.

One topic that I am especially passionate about relates to a series of ground-breaking, although rather cruel, animal experiments run in the late 60’s by a group of psychologists led by Martin Seligman (who wrote a wonderful book called “The Optimistic Child” that I highly recommend).

In these experiments, 3 different groups of dogs were given electric shocks. The first group of dogs were strapped into a harness, but let out after a certain time. The second group of dogs could press a panel with their nose that stopped the shocks, and the third group of dogs were given random shocks that they could not control. Later, all the dogs were put in a box with a low barrier they could jump over. When the shocks started, dogs from the first 2 groups jumped over the barrier and ran away. But dogs from the 3^rd group did not even try to escape! Instead, they simply stayed where they were; passively resigned to the shocks they were receiving.

Why am I telling you this rather upsetting story? Because those dogs in group 3 had developed what the researchers defined as “learned helplessness.” They had learned that they could not control the negative experiences they were having and so they gave up even trying.

The effect of learned helplessness has been shown very clearly in people too, and it is associated with apathy, depression, anxiety, phobias and loneliness. It is also worth mentioning that this kind of emotional difficulty over time has proven to weaken the immune system and worsen physical disease. In other words, having a feeling of control over our environment directly impacts a person’s chance to live a full and happy life.

This is important because the environment our children find themselves in could easily be promoting learned helplessness, with all of the negative consequences that it brings.

On the other hand, when a person learns that they have control over an event or their situation, they learn what psychologists define as “mastery.” Through repeated experiences of mastery, we learn that we can make a difference, we can change our outcomes and that things can work out, thus, we develop a sense of optimism about the world.

For most children, their first two years of life mark their transition from being a helpless little creature entirely dependent on caregivers, to an individual with increasing control. At first they cannot even control their cries but slowly they learn that they can intentionally call for help. Their repeated effort in the face of multiple failures means that they do eventually crawl, walk and talk.

For our girls and boys with Rett syndrome, this is not the case. Unfortunately, many will never achieve these milestones. Others do learn to walk and talk only to lose those skills in a brutal regression.  I really believe that these experiences of loss and failure teach our Rett children pessimism. Unfortunately, because Rett Syndrome takes so much from them, it teaches them that you can do something today and tomorrow it is gone. That you can work repeatedly on something, and never succeed because your body is simply not within its own control.  The danger of this is learned helplessness – giving up, becoming passive, depressed, anxious and even more physically unwell.

We need to look very carefully at how girls and boys with Rett syndrome are spending their time. For example, are they doing hand-over-hand art at school? What an exercise in helplessness! Are they spending time watching other children cook when they cannot participate themselves, or on the side-lines during PE. Do they have any say over what they wear, what they watch, how they spend their time? Are their needs being anticipated and fulfilled without their input?

Simply put, are they passive recipients in their own lives?

What can we do to avoid these situations of helplessness? The answer is to engineer and provide opportunities to create mastery experiences. The more we can do as parents, teachers and therapists to build control into the lives of people with Rett syndrome, the better.

High tech eye gaze computers offer a great way to achieve this, but soft tech options can be even more powerful. Identifying and consistently reinforcing (or teaching if necessary) a best yes (e.g. look at you for “yes”, away for “no”) has the potential to become life changing for people with Rett Syndrome – do you want a cup of tea? “Yes!” Do you need the toilet … are you hurting … do you feel sad? The world of communication is opened by a simple yes or no. He or she starts to learn they can have some control over what happens to them.  They should be offered multiple ways in which to access communication, including both high tech and soft tech options.

What mastery experiences can we create to help them feel encouraged and motivated to think and believe optimistically about themselves and their world? Can they direct the choice of colour and design while someone paints on their behalf? Can they create the recipe to be cooked? Choose the soundtrack? Decide what to wear? What can we do to build in control? These are vital questions we should ask ourselves regardless whether we are parents, teachers or therapists.

Of course, it is not possible to offer choice and control all the time. Life gets in the way and the challenges of profound disability impact everyone in the family. Looking back on the 2 years between Alethea losing her last words and bringing home her eye gaze computer (2 long years of battling for funding), I now clearly see that she was depressed, grieving her lost skills and unable to share her sadness and frustration, feeling lost and helpless. When we learned about the “best yes” and then her eye gaze arrived she was finally able to start actively communicating again. She began to be interested in her environment again and to settle more happily into herself. What this experience taught us is that with two things – the right tools and the right attitude – we can make a real difference quite a lot of the time.

Rett University has become a great resource for exactly these tools. The work that we have done with Susan Norwell to help Alethea really start to use her eye gaze computer and to massively boost the reading and writing that she is doing at school and at home are the keys that are opening the door to mastery and control as she grows up.

Since Alethea has had access to multiple forms of communication and has started to be challenged to work hard and learn more at school and to be responsible for making her own decisions where possible, we have seen a huge difference in her happiness, her sense of peace and what appears to be her optimism. It is a driving purpose for us to see her start to take control over her own life and fulfill her true potential.

About Jennie

Jennie lives in a small village (with a duck pond!) in Buckinghamshire, England, with her husband Mark and their two young children, Alethea who is 7 and Michael who is 2. Alethea has Rett Syndrome which was diagnosed in 2012 when she was 3½.

Jennie has worked in marketing and marketing research for the past 18 years and is also a psychologist with an MSc in Applied Positive Psychology and a Complementary Therapist (massage, sports massage and infant massage). She is currently studying toward becoming a Cranio-Sacral Therapist. Her passion is child development and especially well-being for little people and what we can do to help our children grow up into flourishing adults.

Meeting Susan Norwell about 1½ years ago was literally life changing for the whole family. Since then, Jennie has taken the Guided Reading Course on Rett U, as well as attending Susan’s live Guided Reading seminar, where she met the lovely Roger! Alethea has been using the Rett University Flipbooks and resources from Rett U on a daily basis.

With all this going on there is not much spare time, but if when there’s a chance, the family all love baking, walking in the woods and feeding the ducks.

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Quick tips from Rett University to get started on empowering your child!

• When spoon feeding, be sure to wait until your child closes their lips down over the spoon instead of you angling the spoon to get their upper lip to push off the food.
• Give a foot massage! Ask which foot they would like you to rub first and wait for them to twitch a foot for their answer.
• When getting dressed, only go “half way” with the assistance. Example: Put one arm into the sleeve but wait for them to push their arm through.
• Work on a way for your child to “kiss” you goodnight. Pick something they can do and ask them to do it after you kiss them. It could be a nod, a hand movement, a blink. Let them know you love their “kisses” which will inspire him/her to know they can show their love for you.
• In the tub? Fill a cup with water and hold it in front of your child’s hand to tip over and spill the water out.
• Give choices every chance you can get. Picking out clothes or choosing to read a book, let your child select from two options with their eye gaze.
• Help them to figure out through communication what they need vs. always anticipating everything YOU think they need.