In her regular column for Able magazine, Jane Muir shares her ongoing experiences of life with – and without – her disabled son.

Well, my son has gone back to residential college. While part of him wanted to stay at home, he was also ‘excited’ and, while part of me would miss him, I was jubilant at the freedom and the opportunity to be myself again – just for a bit.

It feels so very different when I am working, in a way that I am not sure that anyone who has not been a carer can comprehend. The elation doesn’t make sense – it’s irrational and annoying – but dressed in my working clothes, walking into a classroom as a supply teacher, I feel as if I ‘count’ again. I am a real person, responsible, and the world treats me differently.

Why should this be? For 18 years, I was working very hard, doing a responsible, demanding, exhausting, stressful job as full time carer. I gave up my career, the prospect of a mortgage and holidays abroad. I learned every trick in the book on how to survive on very little. I knew it was the right thing to do, so why didn’t I feel like I counted?

Supply teaching can be stressful, but you do get evenings and weekends off, you get to chat to people during breaks and you don’t even have to go to work if you are ill – as a carer there is no such luxury! There is something about belonging, status, being paid, and being seen to be ‘doing the right thing’. No-one sees you hoisting in your dressing gown at 2am. No-one even knows you had to.

It is uncomfortable being on benefits. Phone calls to the DSS are often humiliating; endless forms to fill in, declarations to sign and requests to see your bank statements  make you feel like a scrounger. It makes no difference if you are on benefits as a fulltime carer or because you are unable to work due to physical/mental disability or any other bona fida reason.

Even Carers UK are uncertain about how on earth my benefits are going to work out if I am working some days and not others, during term time but not holidays, and at many different places for various different employers. Those DSS office clerks will doubtless have a field day when I start gleefully reporting my ‘changes in circumstances’…

Did I really need to be on welfare all those years? I can’t see how I could have done things differently. Having a flexible, part-time term time job – in itself, hard to come by – might have been life-enhancing, but that would have meant earning just enough to lose my Carers Allowance – so, I would have been working virtually for nothing but still caring just as much. Given that the DSS treated me suspiciously whenever I tried to declare any extra earnings from freelance writing, I soon worked out it was better just to do voluntary work. Even then I got into trouble – was I really not being paid or just pretending? And, for some reason, being a volunteer in an office full of paid employees just didn’t give you the same status. My black suit felt bogus.

Why should these things matter? They just do. Being a carer doesn’t cut it; however good you are at it, it has zilch kudos. The welfare system is partly to blame – appreciative as I am that we have one at all!

I am still a carer, albeit part-time. Sorting out Alistair’s own benefits, bank statements, grants, his long college holidays, his worries, any illnesses, his setbacks and challenges, his future – all take effort, both physical and emotional. I still sometimes wake up in the early hours thinking he has called me, and lie worrying about his wellbeing. I tell myself he is 18 and has a swathe of people looking after his best interests. But, unlike other 18 year olds, he can’t communicate clearly, can’t plan for himself, finds it hard to complain or get things done, cannot sign his own bank account or use any technology without help, and his future is very much in the balance.

Yesterday I went into a special unit for boys with challenging behaviour. One of them watched me sideways for some time before commenting: “Sir, it’s like having your mother come into school! It’s embarrassing.”

When I last taught I was in my 20s and boys would flirt. Now, I know every intimate detail there is to know about teenage boys and their needs. I can hardly be offended by being perceived as ‘mother’!