10 years ago I was part of a group of parents campaigning locally to save the local children’s respite centres from closure. These were establishments that offered families of disabled children an overnight break from caring for their child. One such centre provided me and my family with a lifeline which I will be eternally grateful for.
During campaigning the BBC’s Panorama team approached us to make a documentary about the plight of families who had children with severe or profound and multiple learning disabilities. The documentary was aired in 2003 and was called “Survivors” http://news.bbc.co.uk/1/hi/programmes/panorama/2636227.stm
The response to this moving and distressing programme prompted Mencap to develop a national campaign called Breaking Point. My fellow campaigners and I got involved.
Ten years on Mencap are revisiting the campaign again and my friend C and I have been speaking to the campaigns officer about where we are now and to look retrospectively about what our “breaking points” were and what made a difference to us.
I had a chat with C last night and it brought back so many memories of that time. We got talking about the term “short breaks” versus the term “respite” (the latter is the one we used at the time!)
C mentioned that she didn’t like the term “short breaks” it put her in mind of a trip to a hotel or weekend in Paris, London etc. And, while I agreed with her, when I worked for Together for Disabled Children, the then Governments appointed agency to deliver Aiming High for Disabled Children (the last Governments policy for disabled children and their families) the term respite was completely frowned upon. The term respite I was told had negative connotations and meant “laying down the burden” Disabled children were not a burden and shouldn’t be seen as such.
The dictionary definition for respite is here…
|reprieve – postponement – rest – deferment – delay|
I can quite see why some people, including some other parents of disabled children would object to the term respite but personally the term short break doesn’t quite cut it for me. If I’m honest it’s always felt as though it’s trivialised the very real need for a proper break. By proper break I don’t just mean a day or a couple of hours here or there, I mean a regular and guaranteed overnight break, a full weekend or full week. A short break sounds like a treat, a “jolly” and if we see it this way what chance to do those who know nothing of our lives stand when it comes to understanding the stress that some of us are really under and essential need for a break.
Respite on the other hand…or “a short period of relief from something difficult or unpleasant” rings much truer to me. Now I’m not saying for a minute that G himself was “unpleasant” or “a burden”, but the relentless demands on our time and energy in caring for him, without any sleep or let up certainly was difficult, stressful and at times felt like a punishment…
From the age of two years old G didn’t sleep for more two or three hours a night. When he was awake he couldn’t stay still and needed to be watched constantly (this was also the same time his epilepsy was at its worst). At his first playgroup the staff found him so exhausting that they could only manage 15 minutes shadowing him at a time and yet I did it at least 20 hours a day and had two other young children (one two years older and one two years younger) who needed my attention too. When he started school the first target for them was to get him stay on any activity for more than 30 seconds, so clearly concentration span was an issue! Developmentally, mentally and physically, he was way behind other kids his age and there was also all the appointments with physio’s, OT’s, speech therapists, neurologists, psychologists etc, etc … Basically, as adorable as he was then, he was hard work and was more than a full time job for one person.
The lack of sleep was the worst thing and I always felt I could have coped better with everything else if I’d had a decent night’s sleep. The worst of it was that unlike other parents of young children who don’t sleep I could see no end in sight. Children with Angelman syndrome are notoriously bad sleepers and it is a well documented part of the syndrome and everything I read about it pointed to years and years of sleepless nights. I had no idea at the time whether I would ever get a full night’s sleep again and the thought of just four or five hours in a row looked unrealistic too. I was exhausted, depressed and bad tempered which was impacting on the way I parented my other kids and my relationship with their Dad. I’m told that sleep deprivation is used as a form or torture and I felt like I was being tortured every day.
My breaking point came when G was five years old. My social worker, a lovely lady who had been a huge help to me in recognising the pressures I was under, and totally “got it” (in fact she was the one who started me campaigning!) rang me to say that the family who had said they would look after him for one night a month (note, just one night!) had said they were considering pulling out of the arrangement. The thought of having just 24 hours relief from looking after G had been the light at the end of the very dark tunnel and the hope of this very short break had kept me going for over a year. The threat of losing it tipped me completely over the edge.
I can remember vividly the conversation we had… I told her that if I didn’t get help now then I’d either be a single parent in which case they’d need to come and take him away or they should just come and take him now.
I remember crying uncontrollably down the phone “I feel like failure” I sobbed, “You’re not a failure Gail”, she said “no one could cope with what you’re coping with without help”
I asked her what I needed to do to get them to do something. “If I have to say I’ll hurt him, then yes, I’m so tired there is a distinct possibility. Will the fact he’s in danger make any difference”…I was clutching at straws, I was desperate, I was at breaking point!
Fortunately for me, and thanks to the understanding of my lovely social worker, within a week crisis was averted. The family were placated and a first overnight stay arranged. After a year the family decided to end their arrangement and we were allocated a place for G at a specialist respite centre in Oxford. The breaks increased from one to eventually five nights every month until he was 16. These breaks were our lifeline.
They were not a treat but an essential way of supporting us. Overnights stays were the only way we could have a real rest and they benefitted the whole family and for us these stays could only have been regular, flexible and guaranteed at the kind of centre he stayed in. They enabled us to spend precious time with our other children and get some guaranteed sleep a few nights a month. They are the only thing that enabled us to keep G living at home with us for as long as we did.
I still find it hard to think about those times and this period in my life remains the most difficult to revisit. I still struggle with the fact that I was at such a place in my life and such a state, emotionally, mentally and physically that I thought the only option was to give up my much loved little boy into the care of others. It was the most painful and difficult place I’ve personally ever been.
The guilt attached to sending him away to a respite centre was enormous, I hated the fact I had to do it but the reality at the time was that without these breaks it’s doubtful whether we could have continued to have him at home full time… so I sucked up the guilt and got on with keeping my family together!
Years later A big focus of Aiming High for Disabled Children was on short breaks. Millions of pounds were spent on improving access to breaks to support families of disabled children. The major focus was giving children the opportunity to enjoy things that other kids took for granted while at the same time giving their families a break. I liked the idea of making breaks fun but for me a lot of it was about play opportunities, which in my mind should be available to every child whatever their ability…the right to have fun and play and be a child!
There was always a really negative view of the idea of children going to a residential centre or home, but G loved where he went to give us a break and he had fun. He used the Jacuzzi, played in the ball pool and the sensory room and went out on trips. It was totally geared to kids like him, was as homely as they could possibly make it and he always had a great time.
Residential respite isn’t right for everyone but it was for us and many other families like us and without it we wouldn’t have survived. One of the arguments used was always that this kind of break was expensive. I’ve always argued that while it might be, the alternative is more so. The cost to families of not getting the support they need however cannot be measured in financial terms alone
David Cameron was a big supporter of our campaign 10 years ago. He recognised the need for such breaks but with his Governments cuts to social care funding I doubt such services are a priority. And, It’s upsetting to read reports like this one http://www.chroniclelive.co.uk/communities/newcastle/2012/11/29/families-in-newcastle-protest-against-council-cuts-72703-32330350/ that spout the same old stuff we were saying ten years ago.
Respite may have become a dirty word amongst my peers but I won’t apologise for using it any more. I never saw G as a “burden” but caring for him without the right support was and no family should ever reach breaking point because the right support is not available. I also have to wonder if “short break” will have the same impact in the media when parents or charities try to get the general public to try to understand just how difficult life can be raising a profoundly disabled child.
In 2003 Mencap’s Breaking Point Campaign found that 8 out 10 families caring for a child with severe or profound learning disabilities had reached breaking point at some point. In 2006 they found that the figures remained the same. Given the money that was spent on “short breaks” during Aiming High I do hope that the 2013 report shows things have changed dramatically for the better but sadly I won’t be holding my breath!
This post has been written in loving memory of Emmy Myerson “A Survivor” who sadly passed away November 2012