Everyone knows that disability is difficult and that living with disability changes your life. However, what I didn’t know was that how much having a disabled child would change not just my life but also my whole being. I am a different person because I am the father of a disabled child and I like to think that I am a better person for it.
Men react to the news that their child is disabled in a many different ways. Women seem to cope with the news and absorb it, understand the implications and get on with things a good deal more readily than men do. Underneath the machismo, men are fragile, complex creatures and I suspect that every father feels the shock of disability keenly. Men are supposed to be strong, competitive, authoritative and confident. Knowing that one of your children is somehow less than perfect is difficult to absorb for many men. I have seen reactions ranging from anger, to denial and withdrawal. Some men, whilst they love their disabled children, will not talk about them; some refuse to accept their child has a problem or constantly seek a miracle cure; some have cracked under the pressure that a disabled child places on their relationship and their home life and have walked out (sadly, the separation rate for the parents of disabled children is significantly higher than the average). However, after the initial shock most men show steely determination and promise to do whatever it takes to look after, love and nurture their children.
I have tried to keep my promise but it is hard. Everyone knows kids are demanding. Unfortunately disabled kids are even more demanding. I had no idea how busy life was going to be with Arun. After he came home from hospital, Clare and I counted that he had 120 medical appointments in the first six months. That averages out at one for every working day of the week. Arun has a bigger entourage than Elton John (and in my view more musical talent but hey, I’m biased). His two physiotherapists, his two occupational therapists, his speech and language therapist, his consultant paediatrician, his neuro-developmental paediatrician, his neuro-surgeon, his health visitor, his community nurse, his early years support worker and his child psychologist would easily fill a tour bus.
However, these have been the superficial changes. The real impact has been more profound and more subtle. Having a disabled child has taught me what is important and has changed me as a person. I no longer work too hard (indeed, for this year I am not working at all), I no longer drink too much, I don’t spend hours with acquaintances and I don’t play FIFA football on the playstation but I do go running and swimming and I do talk to friends and loved ones.
People’s reactions since Arun was born have moved me. Every single one of Arun’s entourage has made a difference to me and my life. Their dedication and commitment to helping my son is an example. Everyone from my friends, to my family and even my employer have been nothing but supportive and accommodating. Even complete strangers have gone out of their way to help us.
One incident in particular stands out. We had some cards printed up shortly after the boys were born with a simple message announcing their birth and explaining their perilous situation. On the front of the card we had a picture of Rohan’s tiny hand holding my little finger – his whole hand is smaller than my fingernail. We went to the print shop to collect the cards and the manager came out to see us. She said that she was moved by our story and would not charge us for the printing. When I looked at her, she had tears in her eyes. She came around the counter and gave us a big hug and wished us luck. I asked her how much the cards would have cost, so that we could make a donation on her behalf to the hospital charity. She said that it would have been about £100. I was touched – here was the manager of a major chain of copy shops giving away £100 to complete strangers. We had many similar experiences throughout our journey and I am constantly reminded of the warmth and generosity that lies just under the surface of what is so often portrayed as a hard, cynical world. This is a humbling experience and I am a better person for it.
To some extent everyone is defined by the people around them and parents are no different. We are defined by our children as much as they are defined by us – even more so if one of your children is disabled. Having a disabled child has changed my life and mostly for the better: I have made new friends and am closer to my old ones, I am more optimistic and less cynical about the world and know that we as a family have the strength to cope with whatever may come our way. I have the world in better perspective.
As I shuttle him around to his appointments many people just know me as Arun’s Dad. They know nothing about what came before or what I do outside of looking after my son. But that is OK. Arun has shaped my life and my values more than I can understand and so I’m proud of the moniker. I am proud to be “Arun’s Dad