Tom's Story
Tom and his family live in Greater London. Sarah, Tom’s three-year-old daughter, has an undiagnosed medical condition manifesting itself in chronic hypotonia (floppy baby syndrome) and severe developmental delays.
Tom is a Geologist and regularly has to travel for work, meaning he is not always there when Sarah and his wife need him. He explains, “Being away from home as often as I am puts additional pressure on my wife who effectively becomes a single mother when I am away.
“It also means I feel like I should do as much as I can in the evenings and at weekends when I’m at home, to make up for my travelling. This makes for a long day as I have to travel into our central London office before Sarah gets up and don’t usually get home until Sarah’s bedtime routine is well underway.
Understanding employer
“Fortunately, work is sympathetic to our situation and because of this, they allow me to work from home when we have doctor’s appointments. I feel being able to go to the appointments with my wife is essential to understanding Sarah’s condition so that I am equipped as a carer for when it’s my turn.
Without an understanding employer, I just don’t know how we’d cope. I really feel for other Dads.”
Tom continues, “Spending so much time caring for Sarah has put pressure on our relationship. We have had to make a special effort to make time for each other. At first this was quite difficult and sometimes awkward, but with practice, the short time we spend together in the evenings is usually the best part of my day.
Financial pressures
“Having a disabled child brings additional financial pressures. In addition to the day-to-day costs of caring for a special needs child, there is the concern about the costs of Sarah’s long-term care when my wife and I are too old to look after her. I have resigned myself to working until I drop!
“I think the support for all disabled parents in the UK is quite weak, especially when you compare it to other countries. We have recently returned from living in the USA where the availability and level of resources is significantly better than the UK (for those who have medical insurance).
“Even short breaks of an hour or two once a week can make a big difference to the quality of our lives and our ability to care for Sarah. We feel very privileged to have such a wonderful daughter as Sarah and delight and celebrate her achievements.”
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