There is a point in your life as a parent of an autistic child that it hits you. You have a baby, you love that baby, you care for that baby and you dream for that baby. Dreams for their future, their school achievements, maybe they will love math or dance. You dream of taking them to their first football match and wonder what their first word will be. You imagine them living happily ever after with a job and bringing up your grandchildren.
Then one day it hits you. It hits you that Autism is not going to go away. It hits you that its permanent. That the future is something you need to think about in a different light. Dreams change to hope, worry and fights. Hope that one day your child might be able to live independently or that they will have the help they need. Hope that one day they will eat or speak more words or be able to walk safely down the road by themselves.
You start to worry about the what if’s. What if they can’t ever leave home? What if they aren’t ever potty trained? There are so many what if’s but the big one, the one at the back of all our minds is what if something happens to me? What happens when I get old or lose my mind? What will happen then, to my so dependant child whose world is basically me, when I’m no longer there?
It’s a fear, a real fear that many of us face. It’s always there at the back of your mind as you take each day as it comes. The days don’t last forever and we always have to move on. What will happen to my child when I’m not here?
So what can we do? We hope, we plan, we look at the options available just in case, we put our trust in a system that most of us have lost faith in years ago. I’m not going to pretend I know the answers for everyone because I don’t. However I do know that it can be good to be scared because it makes us consider the options. We can take the fear and turn it into a positive by using it to make us think practically. It is also good to remember that others have been here before, that autistic children and adults have been fine and that has to give us a bit of hope to hold on to.
Some dreams for our babies may have turned to fear and worry, but others we can change to more realistic dreams. We can grieve the lost dreams for a while and then we can turn them to positive dreams. We can celebrate every step, the small things. We can take hope from every little achievement.
My baby might not become a Doctor but when he was little he couldn’t talk to strangers or cope at all going into a shop, yet last week he managed to walk to the til in a bakery and buy himself a cake! I now dream that he will achieve everything he dreams of achieving!
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5 thoughts on “The biggest fear for parents of Autistic children”
So, true. I remember the day I cried when I realized that my daughter would be the one to make all the decisions for my son in the future. I realized this was something she never signed up for but that it eventually would fall on her. We have tried to make sure she knows all our wishes and have everything written up but it still makes me sad.
It is so sad but your son is very lucky to have a sister who will do that and it sounds like you have done the right thing x
Having an autistic child imposes big changes to your dreams and your lifestyle. It must take some adjustment.
Its all about adjustment 😊
I guess that’s true.