And sometimes they live happily ever after. They really do. Because undiagnosed may not mean complex medical problems or disabilities. Sometimes all an undiagnosed child needs is love and a little extra support and they will grow up to lead independent fulfilling lives. For others the future is more uncertain. Tragically some children have such severe difficulties that they never make it to adulthood, and on undiagnosed children's day, we should also remember those families and their enduring grief.
In between there are the children like my daughter who overcome the worst of their medical problems and make it to 18, but with their differences intact. What now?
Smiley has been at the best school in the world for more than ten years: she has been given as much time, care, attention, effort, expertise and genuine affection as she needed to give her the best chance to fulfil her potential.
And she has done that. In spades. Despite her severe physical and intellectual difficulties. But in the eyes of the system she is a burden, a drain on tax payers.
I don't see it like that. My daughter spreads joy wherever she goes, and she supports the economy by creating jobs: for carers, for speech therapists, nurses, doctors, psychologists, teachers, administrators, occupational therapists, equipment manufacturers. A whole army of people are employed and contributing to the economy because of her.
Yet no-one sees that. In Ireland there is no statutory obligation on the State to support an adult with additional needs, so families are back to fighting once again to get the services that are essential for their children. But now parents are older and tired. Years of caring often has serious health consequences, made worse by lack of interest from society, and a patronising attitude from many of those who should be helping.
Being an undiagnosed adult means that my daughter is stared at wherever she goes. Young children wonder why she is in a buggy or wheelchair. Adults turn when she shrieks and smiles with delight . Often they smile back, and those are the good times.
Being an undiagnosed adult means that families have few places to go to for support. There is nothing in Ireland. There is the wonderful SWAN UK, but it mostly focuses on children.
Being an undiagnosed adult in a wheelchair means that activities and trips out are difficult. Many buildings are inaccessible, including our dentist, orthodontist, and part of the GP surgery, not to mention many cafes, shops, beaches and country walks. My daughter loves swimming, but it is so difficult and tiring for me that we rarely go. If she needs the toilet, we find that many disabled toilets are too small, too dirty, locked, or used as storage. And even if we can get in, almost none in Ireland have Changing Places with the proper hoists and trolleys that many adults need to be able to use them.
Being an undiagnosed adult means that your parents will be thinking about the future and what will happen after they die, and hoping that they won't, as the options are all pretty depressing.
Being an undiagnosed adult means that you deserve as rewarding and fulfilling a life as everyone else. And I will be fighting for exactly that for my wonderful daughter.
Written for Undiagnosed Children's Day, on Friday 24th April.
Reasons to be Cheerful - Happy Mothering Sunday #R2BC - Lucky me, the girls made me breakfast in bed Happy Thursday friends, How are you doing? I'm having a funny old week. there is nothing particularity wrong...