Unexpectedly we have found ourselves in the midst of a transformation. It’s not our transformation, but one that is taking place around us.
Many parents we know are undergoing a major transition within their families. It seems that suddenly their children are old enough to leave alone for brief outings or older siblings can be pressed into 'babysitting service' for a spontaneous night out. The hassle of finding constant care for offspring is evaporating.
While there are different concerns about leaving teenagers unattended, this is the first step toward the joys and adjustments of an empty nest, when, after years of dedicating time and energy to their children, couples are free to do what they want. They can eat out, travel and generally rearrange their schedules at will.
It sounds nice.
For parents with severely disabled children, it also sounds like fiction.
Despite his age, we cannot leave our son Deane alone and I can’t imagine a time when that would be possible.
His younger sister, who understands Deane’s needs completely, can look after him for a brief period of TV watching, but cannot lift or reposition him. We also feel strongly that she has her own life to live.
It’s not that we are without a social life. Our friends are very accommodating about doing spontaneous dinners and events at our house. They are also more than willing to put their backs into lifting Deane’s wheelchair into inaccessible houses. But now that they are increasingly free to enjoy short-notice activities and meals without kids, we just can’t adapt to that kind of schedule.
In the short-term, a full-time nanny or a robust roster of capable babysitters could provide some flexibility. But, with the exception of a couple of families who have had nannies since their children were young, I know few who have managed to make either arrangement work.
As children get older, bigger and heavier, many nannies cannot do the lifting, repositioning and other physical care. Babysitters grow up, move on to real jobs and to real lives.
I have spent much time working on a solution for our immediate needs. Finding someone reliable usually buys me a few months, but then something comes up and I am forced to start again.
The long-term issue is so depressing that I have ignored it—although I recognize that is no longer a responsible option.
So, as I listen to our friends and acquaintances talk about their increasingly free lives, I get that isolated feeling I used to get when parents talked about their children learning to walk, talk and pass other milestones. It’s another reminder that no matter how much we try, we live a very different reality.
Ijeoma Ross is a freelance writer in Toronto who blogs at Disabled Families.