by Lesley Maxwell
I often read about carers and feel humbled by the job that they do, the challenges the face and compassion they show.
Then it hits me! I am a carer too! Yet I don’t necessarily fit the mould.
You see I am one of those carers that some other carers look down on, that treat us like we are charlatans, part timers or don’t really understand what it is to be a ‘real’ carer. Why? Because I work!
I understand fully that it is not always possible to go out to work and care for a disabled or elderly loved one, but for me, I had to find a way to make it work. I could never have been emotionally able to complete my caring duties if I did not exist in a world outside my role as a carer to my 14 year old, profoundly autistic, non-verbal daughter.
And before some people start saying, ‘well her daughter is clearly not THAT disabled or she wouldn’t be able to work’ let me explain some of her needs.
As I said, she is effectively non-verbal, can only make sound approximations for 4-5 words. She mostly uses gesture to communicate even her most basic needs. She has motor difficulties which means she cannot toilet, bathe, feed or dress herself. She has serious sensory issues that lead to both her hands being calloused as she continually bites herself to block out the pain of certain environmental sounds. She has to use a wheelchair when she is outside as she runs off and has no sense of danger. She attends a school which caters for the most severe and complex needs in the local authority. So yes, I guess, she is very disabled!
So how did I find myself, somehow managing to work?
When my daughter was three I was forced to give up my lucrative career in banking to focus on meeting her needs, taking her to appointments, supporting her development and learning how to be the mum of a very different young girl!
Quickly I realised that I couldn’t be that stay at home mum forever, financially or emotionally. My heart had been broken, I had retreated into a world of paediatricians, child psychologists and therapists and I needed to find a way to become part of the world again.
I began a course with the Open University and began to study first towards my undergraduate degree then towards a post graduate in teaching. I had always been drawn towards teaching, but now I knew that I wanted to revel in the miracle that is neuro-typical development and also because I needed to be at home during the school holidays once my child was at school.
Six years of study and finally a job!
Two weeks before I was due to start my social worker called me up to tell me that they were not going to be able to provide me with the 1:1 carer after school that they had promised me to allow me to work! They simply didn’t have to staff!
My social worker knew me as a measured and reasonable person who loved my child but was realistic about what help was available so I think he was a tad surprised when I arrived at their offices, sat myself at their conference table and sobbed and sobbed and sobbed!
Eventually an alternative package was arranged that allows me 2 hours after school each day so my daughter can be cared for at home so I can work. This care package is still in place today 5 years later and works perfectly.
Yet every day I worry more and more about whether the cuts are coming to my household. What will I do if they say they can no longer provide this service? I cannot go and get what I need elsewhere, that service provider is not available to buy off the shelf? What about my child’s needs? My needs? I fear none of these issues will be considered when the axe has to fall on our lives.
When you work full-time you would hope to be self-sufficient. Yet I am also terrified that my daughter’s benefits will also soon be cut. When she turns 16 we will be thrown into the debacle that is PIP and her DLA award will be a thing of the past. The money from her DLA has recently gone towards an extension on my mortgage to provide her with an independent living space and downstairs bathroom to ensure she can stay at home with me for as long as possible. But now I fear that one day soon I will not be able to afford the home I work so hard for that has the adaptations I have made for my child.
Nobody grows up aspiring to be a parent of a disabled child but if it happens you adapt, you cope and you protect that child with every bone in your body. What a parent of a disabled child does not need is the spectre of fear hanging over them, restricting them, holding them back and trapping them; paralysed to make decisions about their future because of the callous and ill-thought out cuts that this Conservative government have forced upon the poorest and most vulnerable in society.
I remember a parent once saying to me, “I wouldn’t change my child for the world but I would change the world for my child.” I now desperately want to change the world for my child. Not only to make it a more accepting place to live in, but I urgently want to stop this brainwashing, this despicable dogma that is being fed to the masses by the mainstream media that all benefit claimants are ‘at it’ that they are spongers and a drain on the public purse.
I have been changed by having my child. I am now so much more aware of society, those in needs, the have and the have-nots. I can see that those who are supposed to support and provide for our children are merely out for themselves. My own local authority is having to make savings of £23 million over the next three years and has just recently voted to increase the salaries of three senior officers in the region of £15,000 per year. The authority, which is run by a Labour, Conservative and Liberal Democrat coalition, (to shut out the SNP!) described the timing as “difficult” but said senior officers had not had a pay rise since 2008. Before the rise, the chief officers were paid between £78,000 and £102,000 per year. (The Herald Wednesday 26 November 2014).
Before having my child decisions like this would have gone unnoticed. Now I see the inequality all too vividly. In the words of Eddi Reader, “Five or ten lifetimes ago, there lived a girl that you don’t know, she walked about and answered to my name!”
Not anymore… Because I’m a carer: – Definition of carer in English: noun British
“A family member or paid helper who regularly looks after a child or a sick, elderly, or disabled person.”
But I am not just a carer. For my child I am an activist, a therapist, a teacher, a supporter, a decision maker and most importantly a mum. A mum that will never stop fighting for what my child deserves and for a fair and just society where we are all treated with respect and valued for who we are not what we have!