Monday, 22 May 2017

Disabled Children Need Free School Meals

Free School Meals are under threat and they are a vital life line for over 500,000 disabled children in the UK. As a mother to two disabled kids I want to tell you why taking free school meals away is a bad idea Theresa May. 

So the Conservative Party wants to remove free school meals from children in the Reception Year and Years 1 & 2. This move to cut costs will still protect those families on extremely low incomes but it does nothing to protect families like mine.
If you are a Conservative voter looking in on my family life, you might see the wife who stays at home, while my husband goes out to work. In your eyes we are the ‘middle class freeloaders’ who live in a mortgaged home and are happy to take Child Tax Credit and Free School meals. But what you won’t see is the wife who can’t go out to work because she is a full-time Carer to two disabled children. You won’t see my husband as he really is. Exhausted and over worked, trying to keep a roof over our heads, where once there were two incomes and now only one.
 We barely get by each month. Can you imagine for a moment having half your income and your ability to work taken away from you overnight? But this is what happened to us in 2010 when our twins were born. I had to make the choice between running my own business and caring 24 hours a day for my daughter who has required intravenous feeding and gastrostomy feeding from birth. Of course there was no real choice; I had to lose my business and in the process make three members of staff unemployed. This is the social impact of a childbirth that went wrong. The ripples of its effect stretched beyond just my husband and myself.
We have spent the last few years treading water it seems, and at times feeling like we are drowning. I have tried to get some ground beneath my feet. I survive on Carers Allowance, but it’s not really surviving and in the last year I have tried to work self-employed as writer and photographer but progress is slow.
So what does this all have to do with free school meals? It has everything to do with them. Free school meals are not just about the free food itself. For disabled children it relieves the financial burden for families who are already struggling. School meal times provide much needed social interaction for children with Special Needs. For children like my daughter who have enteral feeding tubes it is a valuable learning process where they can learn to eat oral food amongst a group of friends.
Next September my children will no longer qualify for free school meals and we will have to pay. For us this is a huge pressure to find £2.20 per day, per child. Before you say ‘Well can’t they just take sandwiches?’ there is a huge dilemma here in terms of my daughter’s health.
Have you ever wondered why you can speak? Those valuable months spent weaning on to solids as a baby enabled the muscles in your mouth to develop in such a way that eventually your first words came. Every time you put food in your mouth your senses get used to the sensation of chewing and swallowing. It might sound straight forward but not if you are a child who spent much of the first year of your life with a Nasal Gastric Tube down your throat.
It took my daughter almost two years to try oral food without gagging and being sick. Two bowel surgeries and other procedures that followed left her extremely orally averse. We spent months dabbing one drop of yogurt on her lips to get her to entertain the idea that food might be ok. It took another year before the idea of a spoon entering her mouth became acceptable. My daughter could speak very little by aged three and it was only when her oral food intake increased that her language ability began to improve.
Ask every specialist involved in my daughters care and they will tell you that eating with her peer group is an essential part of her healing process. School meal times are a lifeline. I can still remember the first day that the school called to say my daughter had eaten an entire school meal and they didn’t know what to do about her feeding her through her gastrostomy tube. It was the first time in her life that she had eaten an entire meal. Of course it’s never quite as simple as they just start eating, far from it. My daughter has developmental delay, she becomes emotionally volatile under pressure and meal times are a huge pressure. Now aged seven nearly, she still doesn’t eat enough to sustain her own life.
I can’t take her school dinner away from her, I will have to struggle on and find the money for her meals because even on the days where she might only eat one thing on her plate she is at least eating. Without that stimulation of school dinner times there is a high probability that her speech will slow down in its development. Certain textures of foods are overwhelming and bread is one of them. If my daughter was sent to school with a traditional packed lunch she would eat nothing and face the next decade relying on her enteral feed through her gastrostomy feeding tube.
I am one of those families sitting in the middle of ‘middle class’ a definition that means nothing. I have a degree, I once ran my own business, both are signs of that upwardly mobile section of society that politicians and the press talk about as if we are all okay; we are doing just fine with our lives. But it is an urban myth because these labels mean absolutely nothing when your life is torn apart by disability. It is estimated that 84% of mothers of disabled children can’t work compared to 39% of mothers of non-disabled children. Only 3% of mothers of disabled children can work fulltime and a further 13% work part-time. I would love to go back to work and provide extra income for my family but here’s the catch. I would have to put my kids in a specialist play scheme over the school holidays or take on a respite worker. My local authority currently doesn’t provide reduced cost support. Instead my only option would be to buy in care from a local charity called ‘Take A Break’ and its fee for one to one support and play schemes in £14.45 per hour per person needing care.
Welcome to the world of the ‘Middle Class’ parent of a disabled child, do I sound like I am freeloading now? I am truly thankful for everything we have, and the free school meals for these first three years have helped keep my kids healthy and strong, at a time when our lives have been in complete emotional turmoil.
School meals have helped to keep my daughter alive and developing in a way that you perhaps until now could never have imagined. Free school meals aren’t just about helping the most vulnerable children who have no food at home, they are also part of a wider system of health in this country that will become blindsided by a Conservative government. Free school meals for all children at a critical time in their growing lives can make a difference to long term health. Let us not take away from our future generations the ability to make healthy choices in life. It is in education where we can start to make those changes. The school dinner menu is as much a part of our child’s education as the national curriculum.

NOTE: The statistics in this blog post are from reports by Contact a Family and The Papworth Trust. You can read in more detail about this here: 

Thursday, 2 February 2017

Abandon All Hope

Photo © Kusuma Dawn Hart

Having been through some seriously testing years with the certainty that there are more to follow I realise now it is time to abandon all hope. At first it sounds a little drastic, possibly even depressing! What do you mean abandon all hope? Is that Kusuma giving up, lying down and saying she has had enough? Definitely not. It finally means I have grasped the connection between my fears and hopes. I have the words of Pema Chödrön to thank for this discovery having recently read her book ‘When Things Fall Apart’.  She writes ‘ If we’re willing to give up hope that insecurity and pain can be exterminated, then we can have the courage to relax with the groundlessness of our situation’.

Since my life was turned upside down in June 2010 many good people have tried offering a cheery word or too, even using the term ‘there is always hope’ but I could never quite grasp that idea. Hope to me seems empty; every time I have tried to be hopeful about a situation I have almost immediately found myself spiralling down in to a ball of fear. I get a knot in my stomach, and the ‘What if’s’ start to whirl around in my head. I can’t shut them off and then I start imagining life in five years time or twenty years time. This process means I am on seriously shallow ground, I am not in anyway present with what is happening now in each and every hour of the day. Every time I worry about what the future holds for my family I am not present with the beautiful moments of today.

The more I experience the teachings of The Buddha the more I question my whole life as it was and as it is now. I am starting to finally get my head around the idea of impermanence; and letting go of even shallow ground beneath your feet can be scary. Why do we grasp on so tightly to hope? In hope we think there will always be somewhere better to be, that we will become a better person, and that the people we love will get better. In hope there is no time to stand still, no time to be present with what you have today. How do we know that hope will bring better? We don’t and that is when fear and anxiety find their way in to our minds. When we live our lives hoping, we live in a constant state of seeking pleasure to avoid the pain. Chödrön points out that while we might have found a thousand ways to hold everything together, the ground will just keep moving. She says that if we want to dissolve our suffering then we need to ‘Abandon all Hope’ and move in to a state of ‘Hopelessness’.

In hope we delegate responsibility to someone or something outside of ourselves. Even if we believe The Buddha to be our saviour through the dharma teachings, we are wrong. Chödrön suggests that we have to experience the teachings without hope or we will just fall in to the trap of grasping on to them. 

When we experience suffering in our lives our reaction is to feel that something is wrong. However the First Noble Truth tell us that we all experience suffering, which means this is ‘normal’, there is nothing wrong with this experience. Once we accept that suffering is part of life we can stop apportioning blame on others and ourselves. We make our mistake by thinking that the suffering can be transformed by having hope, but what really happens is that the hope only gives rise to fear and fear draws us in to avoiding our suffering. As long as there is hope there is always fear, as Chödrön explains ‘In the world of hope and fear, we always have to change the channel, change the temperature, change the music, because something is getting uneasy, something is getting restless, something is beginning to hurt, and we keep looking for alternatives’.

I have found ‘When Things Fall Apart’ to be a very supportive book for someone like myself who is living with so many uncertainties. My son had a stroke at some point in the womb. No one could explain exactly what happened and I remember thinking there must be someone to blame, the doctors, even myself, had I done something in my pregnancy to cause this suffering. It took me along time to accept that ‘shit just happens’. The day after he was born a softly spoken consultant broke the bad news. ‘He may not walk, he may not talk, he might be blind, we just don’t know’ she said. At that point I think the only thing that got me through was hope that they might be wrong. But that hope brought with it an immense amount of anxiety. As he grew I would worry if I thought he wasn’t looking at me, and I worried that his right arm didn’t move as much as the left. We hoped he would speak and he did, he walked and he could see. Wow! Isn’t hope great, I thought. But I was also aware of my constant agitation and concern for the future. I think in the first three years of his life I spent more time worrying about what could be wrong rather than celebrating what was right. Of course I have now reached the stage of ‘Abandoning All Hope’ thanks to this book. I have to. If I don’t then I won’t get through the years ahead because you see hope is fragile, it lies and cheats you out of the present moment.
My son’s brain damage is for life, nothing will change that, and although he has reached many milestones there are neurological symptoms now starting to appear. If I carry on hoping they will go away then I am simply opening my self up to more disappointment, more grief, and more pain. If I give up on hope and embrace hopelessness then I will accept that things are always changing and out of my control. There’s a whole load of fear just transformed right there. If I don’t give it energy then it won’t spoil the beauty of the moment I have right now. So I am just going to watch my little boy grow, spend each day captivated by his beautiful smile, and accept that change is inevitable and with change there will be some suffering, but there will also be love and an appreciation of the life we have. We can’t grasp on to what isn’t there.

Chödrön points out that once we find hopelessness we also find confidence. This gives us the courage to relax with the groundlessness of our situation. To be in the present moment, to be mindful of everything we do, brings us to a place of great friendship with ourselves.  If we do this we can learn not to run away when times are hard and have the courage to face the impermanence that is there everyday of our lives.  

When Things Fall Apart is a practical, honest look at life when things feel out of our control. It offers many insights from a Buddhist perspective on how to transform your feelings. Chödrön suggests posting on your fridge the words ‘Abandon All Hope’ an alternative to some of the more new age affirmations that support the self. Fridge magnets and coloured marker pens at the ready I am off to put that suggestion in to practice. Anyone else want to give it a try?

‘When Things Fall Apart’ by  Pema Chödrön is published by Harper Collins.
BOOK ISBN: 9780007183517. Or E-BOOK : 9780007370085.
Paperback edition available on Amazon Priced £9.48 (Feb 2017)
A Kindle edition is also available (£5.74)

(I originally wrote this article in 2015).

Tuesday, 31 January 2017

When we feel alone & unloved we cannot care for others

In my faith as a Buddhist I spend a lot of time examining the ‘self’ so you would think that I am ok with my own company but in fact I am not.

Years of being a Carer have left me lacking in self-esteem, and without the daily 9 to 5 grind of work I am isolated and alone in the house most days. I feel like ‘Shirley Valentine’ having a conversation with the wall. Ordinary household objects become your new best friend.
The nature of my twin’s disabilities means that holding down a full-time job is pretty much impossible. The cost of specialist afternoon childcare or during the school holidays would cost more than any wage I earned. The average cost of a private Carer these days is around £12.00 per hour.

While my husband might complain about his job, I cry inside with envy. I miss work, I really miss work. I miss feeling needed for more than incontinence pad changes, and tube feeds. I miss being with a group of people and the conversations I had with both colleagues and customers. Now most days all I have is my own reflection to look at. I stare at my ever increasing grey hairs and the baby belly that never really seemed to go away. I am forty-five, peri-menopausal and wishing I had done more with my life while I still had the chance.
But can you hear my moaning? It is all about the ‘what might have beens’ and the past. Now my lessons in Buddhism tell me to catch myself at this point, because my moaning will quickly spiral in to emotional suffering. The remedy for my emotional wobble is to be in the present moment. When I ‘check in’ with myself I can ask the question ‘Why do I feel this way today?’

When we internalize our suffering and pain it simply keeps growing, it is like a vine weed that works its way through every corner of our being. If these negative feelings are allowed to grow then we create the perfect cocktail of chemicals for an explosion. The bomb goes off when the person we care for says or does something that feels as though they aren’t grateful for what we do. Or when our partners come home from work and tell us about their amazing day whilst we have been staring at the same four walls all day without a single person to speak to.
Eventually our anger flare ups can increase to the point where our isolation only increases as family members and friends no longer feel able to have a conversation for fear of an explosion of emotions.

The Buddhist practice of ‘deep listening’ and being mindful of the breath can really help in these moments of anger and isolation. You can sit with your breath and say ‘Breathing In, I know that I am breathing in’ ‘Breathing Out I know that I am breathing Out’ ‘Breathing In I feel my anger in my chest (for example) Breathing out I release it’.

In this process we are acknowledging our own suffering and we are also giving ourselves the space to cultivate compassion for ourselves. Meditating doesn’t have to be a sitting practice. You can try walking in mindfulness. If you can manage to get out in to a local park, or just in to your own garden, a few steps of walking with awareness of the process will bring you back to the present moment. You will see the sky more clearly and hear the birds like you have never heard them before. Everything around you seems to be magnified to a greater intensity and in making the connection you realise you are not alone.
This practice takes time, its not a quick fix, but slowly the knot of sadness in the pit of your stomach will begin to unravel and you will feel that the negative energies will be washed over by feelings of joy.

As Carers we often don’t take care of ourselves first. It can feel like there isn’t space to. But the cold hard facts of the situation are this:


This goes for any relationship, whether it is with a partner, a parent, a child or a friend. We have a habit of expecting the people around us who we care about to help us change in to the people we want to be, but only by working on ourselves can we truly create the kind of transformation we desire.
If we can cultivate peace and harmony in ourselves then helping another person under the most challenging of situations as a Carer will be much easier than if we hold on to our anger and suffering.

On the days where I feel isolated and lonely I try and be more mindful. While my children are at school I give myself the space the practice meditation in its many forms. On the days where I am able to connect with friends and get out of the house I try to be mindful with my activities, I soak up the love and friendship found in conversations and experience so that during the lows I can draw on the emotion of remembered highs.

On the occasions when I have the space to work on my writing and photography I try to be as fully present as possible. There is no time to let my mind drift off to the past or the future. The here and now is all that I have. I have to enjoy the time I have with my camera, and I can’t plan for the next day, because the next day might not come when I want it to! Children off sick from school or hospital appointments to attend can set my work back by days or weeks. Better to enjoy each second of each photograph I take than spend time wishing I could take more.  These days I see taking photographs as a mindful process. I am aware that my breath slows down and I see the tiniest details, which a rushed mind would never capture.

When you feel alone and you are suffering, there is the temptation to stick on the television and do nothing in the hope that you will distract yourself from those negative emotions. Instead you are just feeding them. Remember the vine weed that just keeps growing?  We have all been there. But distractions don’t take the pain away. Cultivate love and compassion for yourself and slowly and gently the joy will return, and in the quiet aloneness of meditation you will find there is no place for feeling down.

While mindfulness practice will not remove your loneliness it will help you to appreciate more the times when you are not alone. It will also help you to accept that there are times of ‘Aloneness’ that are okay. This is very different from the state of feeling alone. They are two separate things that are easily confused. In the space of aloneness you recognise that actually it is okay to be with your own company. Perhaps in the creation of a painting or photograph, or when you are reading a book. Life as a Carer becomes a fine balance between craving states of aloneness where you can enjoy activities by yourself and craving the company of others to stop your feelings of loneliness.

Caring limits our choices and when we do get a few hours respite it can be a challenge to decide whether or not to take the time to be alone and do something you have been desperate to do for ages, or spend time with friends catching up on conversations over a much needed cake and coffee. The answer is often to try and do both. I try to get out of the house and see a friend at least once a fortnight and although I can’t hold down a full time job I volunteer at my local hospice once a week, I divide the rest of my week up  in to one day taking pictures and another catching up on post-production and writing. Both of which transform time in to spaces of aloneness rather than loneliness. 

In reading this I hope that some of you will feel less alone, less angry, less sad. Our Caring stories are all different; our lives might not have the narrative we hoped for. But the end of our stories is still unwritten. We have the chance to change our narrative, but the dialogue we create with the world must start at the heart, it must start with learning to love ourselves again.

Tuesday, 27 September 2016

Carer Burnout- How do we recognise the signs?

Self Portrait

As a Carer you fear hitting a brick wall. What happens if you wake up and you just can’t care anymore? 
Mentally and physically you are broken. After six years of caring full-time for my twins (who both have disabilities) I am here, I have hit a wall hard and I have crashed to the floor.

I sleep in fits and starts, partly my own mind and body unable to relax, partly because my son who has brain damage rarely sleeps through a whole night. I wake as tired as when I went to bed. At one time no matter how difficult my day had been my head would hit the pillow and I would wake up refreshed. But not anymore. I wake up with joint and muscle pain most days; it might subside but only for a couple of hours.

Over the course of the last 12 months I have been repeatedly dismissed by my GP’s surgery when I have gone in with symptoms. It’s a Vitamin D deficiency, it’s hormonal changes (I’m 44); It’s depression (I don’t feel depressed). I have migraines; well that’s those hormones again.

But through all of this I have continued to have overwhelming exhaustion like nothing I have experienced before. Even when I was averaging 4 hours sleep a night when the children were small I never experienced fatigue like this. At no point did any doctor say ‘Its Carer Burnout’ do they even know what Carer Burnout is?

Last week I went back to my Doctors surgery again. This time a GP with a good listening ear said ‘I think you have Chronic Fatigue’. He has referred me to a Specialist, but then what? In order to get well I have to take away my stress, but I can’t stop being a Carer, and I can’t abandon my kids. In a recent review by our family support worker it was evident that extra support will only appear if I collapse, and I am almost there.

I had not realised how much I had burnt out. Apart from a few hours of respite over the six-week school holidays I did most of the caring on my own. A week away was no holiday for me and my husband as the unfamiliar surroundings sent my son in to meltdown every day. While I have had my symptoms for a year they are worse during the intense times of caring during school holidays.

So how do you recognize burn out? I am seriously angry that no one, not my G.P, not my family support worker has ever given me a list of what the signs are and details of how to get help. But then why would they. Carers are expected to stay silent and just get on with it. Below is some useful information on Carer burnout from Care Watch.

Can you answer Yes to the following? If so then you have Carer Burnout.

I feel overwhelmed, exhausted and drained, even after a rest. (YES)

I feel helpless and hopeless. (YES 90% of the time)

I no longer want to be around my loved one.

I have angry outbursts that are uncharacteristic (YES)

I am increasing irritable and impatient. (YES)

I have thoughts of harming myself or my loved one.

I feel increasingly resentful. (YES, I WANT MY LIFE BACK)

I am neglecting my own needs because I don’t care any more

I am eating, drinking or smoking more than normal
(YES, Pass me more chocolate)

I have difficulty relaxing

I am neglecting important responsibilities.

I rarely see or contact friends or family members

I have difficulty sleeping.

I have lost interest in things I used to enjoy.
(YES, partly because I am so exhausted)

Wow! Why isn’t this in a Questionnaire that Family Support Workers, Social Workers and GP’s can hand out? I don’t have the answer right now, but I am determined to find out. This should be a huge red flag for Doctors yet its not being treated as such.

Care Watch goes on to describe several factors that can push a Carer to the Burn Out stage.

- Providing continual care for someone who is unable to reciprocate their feelings or show gratitude for their care.

- Feeling deserted by family, care services, religion or a partner

- Fears about how long you can cope with limited support

- Frustration and disappointment that, despite the efforts put in, your loved one does not make progress or continues to deteriorate. This is a failure to accept that the care you are providing is not the cause of the decline.

- You are reluctant, unable or unwilling to seek out or accept help from others.

So how do we change things before it is too late? 
I am now in a stage of chronic fatigue and I have to claw my way back to good health some how. As I write this a bunch of people from Social Care are going to sit around a table with my family support worker and decide if I am exhausted enough; and if my kids needs have worsened enough, for me to access more respite care. Should we really have to reaching our breaking point before anyone steps in to help?

How can I help my self? Well Care Watch has some useful suggestions and with some discipline I hope to make the right changes:

Diet – or rather lack of it. I need to ditch the caffeine and the chocolate. Both of these have fuelled my caring days for the last 6 years.

Exercise – Something slow, maybe Tai Chi for now.

Meditation – Not only relaxing but also an opportunity to improve my mental wellbeing.

Creativity – I am currently doing some self-portraiture. Both therapeutic, and creative, I also think it drives the message home of what it is like to be a Carer and feel silenced by a system that doesn’t carer for carers.

Acceptance – Be able to accept my feelings of anger and resentment and understand that they are only natural when I feel over burdened. Of course with acceptance one also has to come to a place of forgiveness and I am not sure I am very good at forgiving myself.

Write about how you feel – Well my outlet is a blog, but you could use a journal.

Most importantly for all of us who are Carers we need to:




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