Thank you Kami Olmsted for sharing your beautifully written and very touching story in an effort to help others understand what it is like to have a severely autistic child. Some may think that your story is unique; but sadly, it is one that many parents live each and every day.
Walking through the store with a severely autistic child often attracts unwanted glares, rude comments and even cruel jokes. When your child is 17 years old, 6 feet tall and non-verbal, those moments are amplified to an unbearable level sometimes. When your child starts stomping his feet, employees and customers back away from you or turn down the next isle so as to avoid you all together.
This is April, Autism Awareness Month, so it is my hope that I can help people that don't know autism, understand it a little bit better.
Just imagine, when you become a parent, your life suddenly revolves around your child. You think about their future, what it may hold. You imagine them growing up, playing sports getting their driver’s license, going to college, and having families of their own. When a parent hears the words “Your child has Autism” every dream you had, every imaginary piece of perfection for their life is shattered.
During those first few months after the diagnosis you are numb. You feel like you've been hit by the proverbial bus. You feel like you've been dropped off in the middle of nowhere with no way to get back home. Then the fear sets in. “What do I do now?” In the midst of trying to figure out how to help your child get better, the stability and foundation you once knew is gone. Friends disappear, employment opportunities diminish, and those fun family holidays become a nightmare. You may be at the Christmas party, but you are tending to your child, who can't handle the noise, may be aggressive or trying the entire time to run away. He may be screaming or crying, or both. Your family is saying grace, and your begging God to help your child.
Everything is new, everything is scary, and you become more isolated from the normal world. That same normal world you still live in, but now you are on the outside, looking at that once beautiful simple world flowing by. Even though you don't fit in anymore, you still pretend you do. You realize at that moment that you must live forever. Who will take care of your child for you when they are grown up and you are gone. Will those people love and care for them; will your child know why you aren't there anymore?
So you've been on the Autism Journey for a while now, you've stopped attending community events, you are put on the “Do Not Invite List” Your child's birthday is a constant reminder of what they should be doing at that particular age, but aren't. There's no cub scouts, little league, slumber parties with friends, because your child doesn't have any friends. People begin to feel sorry for you. Even your own family shuns you because they don’t want to look at the reality that you live with every day.
You know there are treatments that can maybe help your child, but you don't have the resources to pay for them. Your medical insurance won't pay for them, so you go to sleep at night in tears because your child isn't getting better, because of you, because you can't afford it. You find a way to try some treatments but you can't do enough. You feel guilty when you look into the eyes of your sweet child, because they haven't gotten better like so many others and you blame yourself.
You start to see the stress in your face, looking years older than you actually are. So now your youth is gone, and you realize, there's no pension, no 401K, no life insurance, no savings account, and your credit is ruined. You are still buying pull ups for your young adult child, still buying toys that most parents buy for their 3 year olds and watching cartoons on television. Instead of the feeling of sadness that your child is going to be venturing out of the nest, you are feeling the sadness that your child may never know that the world is a massive place full of success and adventure.
For many children with autism and their parents, this is what life is like. Some may recover, some may improve, but most do not. Autism impacts every family in a different way, but the love is unconditional, and never ending.
I know this, because Autism is my story.
By Kami Olmstead
"For there is nothing hidden that will not become visible,
and nothing secret that will not be known and come to light."