So....you have heard of the loneliness of the long distance runner..well, I am here to tell you of the loneliness of the long term carer.....It all starts off well. A baby with Otherabilities is still a baby and people goo and gush appropriately (and inappropriately). The baby grows into a toddler and is still manageable and containable..the family still fits in, in its own Otherability way. But the toddler continues to grow and the Otherabilities don't go away. As a family, you start to experience things other families do not...and the gap starts to widen. Time goes on and invitations no longer include the whole family, just selected children. I can understand it...we were a family of many, one of whom no-one really knew how to approach.
Now our boy is grown and all the other children have left home - precisely as it should be.
Our life is not the experience of my friends. Their experience is not mine. The gap gets wider and wider as the years pass by. I am not complaining or moaning or whining, I am just saying it is as it is for us....it is part of our challenge, part of our life, part of being in the Otherability world. We are happy and content in it but the truth is, it can be a lonely place to be.
Jboy is so complex that even if we were invited out left, right and centre, we wouldn't be able to go....but to be asked might be quite nice.
So, if you know a family with a chap or chapess with Otherabilities,don't be afraid to ask but please don't be offended if they say no.
Loneliness is as loneliness does..as Forrest Gump might have said.