A Sense of Value

Recently I had the wonderful experience of hearing a parent truly recognising and valuing her daughter’s qualities and talents, and supporting her daughter to use those qualities and talents.  It was at the Bat Mitzvah party of the young woman in question – let’s call her Shona.  In her speech, Shona’s mum Rachel didn’t gush about Shona’s general wonderfulness; neither did she offer Shona helpful advice.  She did pick out specific qualities and talents which Shona has and gave examples of Shona using them.  Shona’s courage and strong sense of self, standing up to playground bullies who picked on her because she has two mums.  Shona’s sense of fun and adventure as a skateboard enthusiast.  How Shona is caring and generous to her younger sister and to her friends.  Rachel gave some other examples as well – but the key point is that her words were enabling Shona to recognise and value her inner resources and to use them in years to come.

Tom turned thirteen in December and a friend who is Jewish told me which section of the Torah is read the week of his birthday.  It turns out it’s the story of Jacob’s ladder:  while on a journey, Jacob lies down to sleep, using a stone for a pillow.  He dreams of a ladder between heaven and earth, with angels ascending and descending, and he dreams that God then speaks to him. 

Jacob is clearly not a rich or apparently significant person – he uses a stone for a pillow – yet the passage is all about his significance and the significance of all people.  In Jacob’s dream, he and we are not just down in the dust of the earth, we are connected to heaven and we are blessed.

What does all this mean for me as the parent of a young person living with Duchenne muscular dystrophy?

Like many other young people living with DMD, Tom is painfully aware of what he can’t do that other people can do.  A few years ago we saw his self-esteem taking a downward turn as he became more aware of his condition.  On the advice of a psychologist, we asked his grandparents and some other people close to him to write down what they knew about him – to put the good things.  Reading and thinking about those things really helped Tom to recognise, value, and to use his qualities and talents.  It has hugely strengthened his sense of self-worth. 

As a parent I can support that by noticing, just in the day-to-day course of things, what Tom is good at and does well, and telling him. 

Ryan Worth is a young man who has clearly grown up valuing his abilities.  He now wants to study history and politics at university and to contribute his education and talents to society as an MP.  Ryan is also living with Duchenne muscular dystrophy and needs 24/7 care.  Because of cuts to social care in his local authority, Ryan has to share a care package with his brother. https://www.theguardian.com/society/2017/jan/08/the-crisis-of-disabled-millennials-it-feels-hopeless. Simply for this reason, Ryan is currently not able to take up his place at university.

Our government has identified four ‘British values’:  democracy, the rule of law, individual liberty, and mutual respect and toleration for those of different faiths and beliefs and those of no faith. 

Does ‘individual liberty’ not apply to all, including those living with disabilities who need social care?  Does ‘mutual respect’ only apply to faith, or does it apply to all difference, including physical difference?

Current cuts to social care are so severe that they cross a line:  the line that divides seeing individuals as significant, with qualities and talents to contribute, from seeing them as care units to manage as economically as possible.  To cross this line is to move into very dangerous territory.

We need to actively resist the idea that the current cuts in care for people living with disabilities are acceptable or inevitable.  Not just as parents and family members, but as voters, citizens, and media and social media users we need to recognise the significance of every person’s qualities and talents and their right to develop and use those talents. 

The mental health of carers

Becoming a carer changes  your life and can have a significant impact on your mental health.  Much has been written about the challenges faced by carers and how to cope with those challenges.  (Mind and the Carers Trust have helpful information on their websites (mind.org.uk/information-support/helping-someone-else/carers-friends-and-family-a-guide-to-coping; carers.org  ).   I would like to write here about some of the ways I have coped mentally with becoming the main carer of a young person living with Duchenne muscular dystrophy.  By 'care work' I don't mean regular parenting; I mean all the work to do with DMD over and above regular parenting - the personal care, the planning and organising, the meetings and appointments. 

I do not claim to be an expert or a professional, and would advise anyone experiencing mental health issues as a carer to get professional help.  Here I just speak from my experience.  The following are the three main strategies I developed, ways of coping that I wish I had known about when DMD first came into our lives.

Getting a Filing Cabinet
Tom’s diagnosis was an emotional bombshell.  In the weeks and months that followed we also had to get our heads around a huge amount of information and paperwork.  It was a vertical learning curve to find out about the condition, what we needed to do to manage it, and which professionals did what.

Getting a filing cabinet helped a lot.  In practical terms it helped to have somewhere to put the paperwork and to have somewhere we could find things easily.

Emotionally it helped.  It enabled me to separate out in my mind the many different things we were dealing with.  It helped me to feel more in control.  Filing helped to calm my mind.   I think it helped to have somewhere to ‘put’ DMD – it was a way of getting it out of my head.  I could close the filing drawer and feel I had some mental space away from this terrible condition that threatened to engulf our entire lives.  It helped to separate DMD from my relationship with Tom himself.

A Weekly Day Off

For a year after Tom’s diagnosis in 2008, as his main carer I coped by manically sorting out and doing what needed to be done.  At the same time I carried on with my part-time job. Then in June 2009, like a cartoon character whose little legs have kept running even after going off a cliff, I inwardly plummeted.  I needed time to take in the emotional impact of the diagnosis, as well as time to deal with the practical things.  After several months of struggle I gave up my job. 

Along with work I lost structure in my week and a focus other than DMD and care work.  I became a slave to the Duchenne to-do list.  Every day was household drudgery, gritty organising of Duchenne-related things, and caring for our son.  2010 was quite dire.  There was no let-up and I felt depressed and empty. 

In 2011 I decided to change my approach.  I began to treat my care work like a job, and have a day off a week.  This approach was – and is – great.  I'm simply unavailable on Fridays for meetings or appointments.  On that day, I am allowed to do anything, as long as it is not on the to-do list. My Fridays generally involve walking in beautiful woods, watching some nice TV programme and/or reading a good book.  There is always cake. 

It has made a massive difference to my mental health to have a regular break and to look forward to something lovely every week.  Since 2011 I have been able to return to part time work as well.

The Quadruple Diamond

It is a challenge to keep track of everything I need to do as the main carer of a young person living with DMD.  Until recently I have woken up every morning (except Fridays) feeling overwhelmed with the sheer number and variety of small tasks that need doing. 

When I was growing up in Birmingham, there was a big advert on a railway bridge near our house for ‘Double Diamond’ beer.  And Buddhists speak of the ‘Triple Gem’ of the Buddha, the Sangha, or community, and the Dharma, or teaching.

I have decided that my care work is the ‘Quadruple Diamond’.  Tasks fall into one of four categories:  those to do with Tom’s physical wellbeing; those to do with his education; those to do with social and emotional issues, independence and self-esteem; and those to do with training and working with his assistance dog.

Instead of an endless to-do list, I think of the day-to-day tasks in these four groups.  Every three months, I write down, inside four interlocking diamond shapes on a sheet of paper, the longer term issues and what needs doing.  I keep the sheets in a ring binder.   

Categorising and recording my care work in this way helps me not just to keep track of what needs doing but also to keep in focus the purpose and the results of my work.  I can see what has been achieved over a given period of time. 

And the idea of the Quadruple Diamond helps to remind me that at the heart of my care work is a great treasure:  the health, wellbeing, and flourishing of our beautiful son Tom.