Working with Teenagers with Chronic Illnesses

At Critical Publishing, not only do we publish books about Coaching and Mentoring, but we also make use of a business mentor, Sheila Bounford, who works with a wide variety of independent publishing businesses, including Advance Materials, publishers of language learning materials for IB students and teachers. When Sheila told us that Advance Materials’ publisher, Jenny Ollerenshaw had written a booklet for teachers to raise awareness of the difficulties faced by teenagers with chronic illnesses as they go through school, we thought it might be something our own network of teachers and social workers would be interested in. So here follows a guest post from Sheila on the subject.

 

Last week, Stephen Sutton died from cancer, aged 19, after having become an unexpected celebrity; a cause around whom a nation rallied on social media and by putting their hands in their pockets and giving. Stephen’s story warmed hearts, inspired people to generosity and awe, and now breaks hearts. And if we pause to think about it, it tells us something very important about how we respond to serious illness in young people.

Most teachers, at some point in their lives, will teach a child with a serious, immediately life-threatening illness, like a cancer; or a child recovering from a serious accidental trauma. Many have to deal at some point or other with the tragedy of a teen suicide, or a sudden unexpected death. Diagnosis of a life-threatening illness in a young person often brings out the best in others: a rallying around in the crisis from both teachers and classmates, including astonishing acts, like a six-year old shaving his head, so his friend having chemo won’t be the only bald kid in class.

BUT – and it is a big but – there’s another group of seriously ill children that ALL teachers come into contact with in their working lives, whose situation does not produce the same response of generosity and care. The suffering of these children is at best invisible, and at worst a nuisance and a long-term irritant in the schooling system and the classroom. These are children whose long-term chronic illnesses seriously limit their ability to learn or even to conform to classroom norms. Children who live with long-term gnawing pain, who, for example, may need to visit the bathroom much more often than is usual, or who may simply be too tired and fatigued to concentrate.

I’ve been thinking about this a great deal recently, following the coverage of Stephen’s Story and talking with my friend and colleague, Jenny Ollerenshaw. Jenny runs her own small publishing business (creating language learning materials aimed at the IB curriculum). But she’s also the mother of a teenager who has suffered with chronic illness since early childhood. In the past few months we have watched him move on from school, decide not to go to university because he just can’t face more formal study, and begin a career as a Care Giver. And now that his school life is over, Jenny decided it was time to draw attention to the plight of other chronically ill children who are rightly within our mainstream education, but unable to function according to the norms, through no fault of their own.

To do this, Jenny has combined her skills as a serious, professional publisher and former teacher with her knowledge of what school life is like for a child with chronic illness. Instead of merely getting angry about what her son has endured, she has thoroughly researched, written and produced a great but short and easy-to-digest booklet for teachers, providing insights into the experiences and classroom needs of children with chronic illness. The booklet is a prompt for schools to reconsider their approach to teenagers with chronic conditions. With advice from Dr. Daniela Hearst, Head of the Paediatric Psychology Team at Great Ormond Street Hospital, and in consultation with senior teachers, the booklet provides guidelines for teachers to understand and accommodate the needs of seriously ill children with long term conditions that the child may have learned to hide due to embarrassment, or a sheer weariness at having to explain themselves again, and again, often without being believed.

Be warned: this is a short booklet that makes uncomfortable reading. The direct quotes from young people shine an uncomfortably bright light on how unfairly they can be treated in school, and how desperately they wish they could wake up “normal” one day, and the whole vicious circle be finished.

But to anyone who’s been moved by Stephen’s Story, (and that’s all of us isn’t it?) my advice is to read this booklet. It won’t take long but it will show you how very bad we are at supporting young people whose stories are of long term, year-in year-out struggles with pain and illness. Young people who battle to act normal and not be a nuisance, and who want to be believed and respected. With the insights and guidance offered in Jenny’s book, this can begin to change.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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