In two days time it with be World Autism Day. So, what does that mean to you?
Pearl and Papa
Pearl and Papa
To me it means a radical change in a life that until last summer knew as much about Autism as I did about running. I , like many I am sure, was blissfully unaware of what so many families (more than you think) go through every day in order to stay together. I am not joking, the survival rate of relationships that involve an Autistic child are quite frightening. The current projection is that between 70-80% of couples do not last, this obviously varies from country to country but it does seem to be the generally accepted statistic (don't even get me started on the cases of parents who murder their Autistic kids) I can say that through attending the many therapies with Pearl each week these figures seem to be not far off the mark. I have spent afternoons talking to mothers, fathers and grand parents either taking their kids to therapy or picking them up and the story is usually the same, "whats the situation with your child, how severe is his/hers handicap etc etc?". But more than a handful of times I have been asked if it was I alone who was taking care of Pearl. I have to inform them of our situation, that my wife works and we relocated here from London and that I am Irish not English, as most of them seem to think. The people who ask this question are the ones that have fractures in their family lives and in a way are probably reaching out to someone in search of comfort or consolation. Because to do it by yourself has got to be beyond difficult. I have seen the pressure it has put on myself and Alicia, the tiredness and frustration that sparks off arguments, the sidelining of your couple to fight for your child's rights and everyday well being. That Autism does not get the care and attention is needs is a tremendous weight on any family and as little support as their is for Autism in many places, there is no support for the parents except from other parents in the same boat.
Now, that support community is something else. It is a group if people who become inextricably intertwined through their hardships and their success stories. We have been able to share the pitfalls and the milestones with people, some of whom we have only met online, because we are untied by a deep, deep bond of wanting the best for our little ones. I always draw the parallels between this group of people and the runners I know because until you know the pain and effort it takes, you can't ever understand it. But you can help by educating yourself and the people around you, forwarding this to a work colleague, organising a fundraiser, going to Running for Pearl and signing the guestbook. Just do what you can because even a little bit helps. We never thought it would be us but that's the way the chips fall and we will do whatever it takes for Pearl........if I have to run around the world to get it noticed, then that's what I will do.
So wear blue on Friday 2nd and spread the word. We cant do it without y'all.
See you round the bend.