When you become a carer, everything changes. Not just your own life, but society's expectations too. No matter what you were like before, you are immediately obliged to take on saintly qualities and become endlessly patient, loving, energetic, unselfish, undemanding and uncomplaining, with a beatific smile permanently plastered on your face. Don't believe me? Look at the Carers of the Year Awards. Now obviously I have huge admiration for the winners, they really are saints, they manage the most challenging situations and care for the longest number of years. But what do these awards say to the rest of us?
Keep your head down, keep caring and if things get really tough you might get a day out at an awards ceremony in 30 years time.
Don't complain, don't look for help, there's many people who are much more deserving than you.
You made it through the day? Congratulations on "surviving".
Having special children makes a family special (well actually it's made me cross, fat, sick and tired).
You think your life is difficult? Well guess what, it's going to get harder and you will still be expected to keep going.
Yep, these are the messages that we hear all the time. They may help carers to keep going, they may find them inspiring. I understand that, I really do. But sometimes they just make me feel like screaming...
In the words of the song, Is That All There Is?
Is getting through another day all that we have to look forward to? Well I think that carers deserve better than that. I want more, both for me and for the other carers that I know. Somewhere out there are carers whose lives do not resemble those of the award winners. I want to hear about them.
Where are the stories of carers who have made a conventional success of their lives?
Who have careers, who set up businesses?
Who live in nice homes, enjoy hobbies and nights out, have great respite?
Whose children are settled in quality residential care, and who don't feel guilty about it and are not ashamed to say so as they know that they've made the best decision for their family.
Who go on holidays, for goodness sake?
Yep, maybe they needed a lot of help to achieve these things. So let's celebrate the people who helped them. The services that make a difference. Let's tell the world that many carers need that help, very very badly. They are not bad people. Everyone has a breaking point. Congratulations if you haven't reached yours yet. But do not judge those who have. It could be you tomorrow.
One more way Disney World is magical for our children with special needs - For months now, Max has been planning and anticipating a boys' trip to Disney World with Dave and Dave's dad, Grandpa Michael. I figured they'd have the ...