Parents experience...

Perfect role model

Sue Searle, from Stevenage, Hertfordshire, UK, explores the emotional impact of parenthood in her family.

My dad was always just that – my dad. His sticks and in later life his wheelchair seemed to merge into him. His personality was far bigger than his multiple disabilities.

Childhood memories

As a small child I grew up understanding, but never really being told explicitly, that my dad was different to other dads. I knew that I couldn’t sit on his lap but that was OK – the arm of his chair was the perfect height for us to have a hug. My dad always slept in the living room as he was unable to get up the stairs but, again, that was fine with my brothers and me – we were given our own TVs so we didn’t disturb him when he was ill.

By my fifth birthday I was helping my dad with some of his care tasks. His legs often had open sores and he far preferred my delicate child’s touch to the brisk overworked hands of nurses, so I would always accompany him and my mother on hospital visits. The staff always seemed relieved that they didn’t have to clean and dress his sores but looking back now, I am appalled that no-one questioned this arrangement!

When I started school I realised for the first time that my home life was a little different to that of my friends. Teachers often commented on how thoughtful I was to others. One story I am often reminded of is the time, aged nine, when I knocked on the headmistress’s door and asked for a reserved wheelchair space near the school entrance for my dad.

Around this time I realised, as all children do, that no-one is immortal. It then dawned on me that my dad was possibly more mortal than other dads. Although my parents never spoke to my brothers and me about it, we knew it was a possibility that he could die sometime soon.

Looking out for dad

As a family we just got on with life. My dad’s disability (and his possible premature death) was just a shadow that hung around – sometimes large and dark, covering huge chunks of our lives, sometimes just a little patch of grey, depending on how ill he was.

I can remember walking home from school once and seeing an ambulance in the road outside my house. I ran the whole way, expecting to find him dead. My fear turned into relief when I realised the ambulance had been called for a neighbour rather than for my dad.

As I became older I did more and more tasks for him. These had nothing to do with his personal care (he would have been mortified at the suggestion) but I was lending a hand with lots of his day-to-day requirements. I was, for example, sorting out his medication every day – including drugs that I knew could kill him if I messed up the dosage – because he was often too confused to understand the instructions and my mum could not read.

Towards independence

I was the youngest, the only girl and the only one left at home. I decided that if I didn’t move out of home by the time I was 18, then I would feel obliged to stay and care for him. So I moved around the corner into a bedsit. I was close enough to be on hand – like my two oldest brothers who lived a few doors away – but far enough away that I had a life.

On reflection, I know I had the normal teenage reaction of wanting my own life and to come and go as I pleased. It had nothing to do with my dad’s disability.

My experiences at home seemed to mirror my working life. Disability always was a comfortable concept for me. My personal experiences and ethics often led to conflict at work. I resigned from one job because I didn’t agree with a boss who insisted we leave someone overnight without a functioning wheelchair. My dad was always proud of me for standing up for what I believed in, even more so when I stood up for the rights of disabled people.

I eventually decided to leave my home town and move to London. My parents were naturally concerned – I was their little girl, moving away to the big city – but they knew that I had to make my own way in the world. Thank you, Dad, for allowing me to make my own mistakes.

Full circle

About a year after I moved out I started having episodes of blackouts and right-sided weakness. My dad was beside himself; he felt that my problems were because of him. We later found out that one of my conditions is indeed the same as his mother’s. My parents felt they were to blame for me being disabled but I didn’t. It was just one of those things.

I had two choices. I could pick myself up and get on with life, or curl up in a ball and hide. Curling up and hiding wasn’t an option for me and, anyway, I had the perfect role model to cope with living with disability – my dad. He was severely disabled but was still there for me, as any father would hope to be, and he even ran his own business.

My dad always felt guilty about my condition. His last words to me before he became too ill to speak were, “I’m sorry”. I just replied, “What have you got to be sorry for, you old goat!”

Now I have three beautiful children and am facing a similar guilt to that of my father. My son was recently diagnosed with Aspergers Syndrome. I know from all I have read and from everyone I have spoken to that there was nothing I could have done to avoid it happening, but that doesn’t stop the ‘what ifs’ and the ‘whys’.

Before, I couldn’t empathise with how guilty my dad felt – at times, he couldn’t even look at me without breaking down. As parents, we have aspirations about our children and to think that something may stop those aspirations is not part of the plan. But I am a mother first and foremost. I have a disability – so who could be a better person to guide my son?

My son is now a very articulate seven-year-old. When asked how he feels about having a disabled mum, he said, “I only really notice Mum is different when she uses sticks sometimes. I can be anything I want to be as long as I do my almost best”.

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