My mom always told me that being a parent is hard work. She was right. It’s especially hard when your child has a disability. Earlier this year, my 4-year-old son, Jacob, was diagnosed as moderately autistic. While this wasn’t a surprise – he’s been receiving therapy for 2 ½ years – it still didn’t take away the pain of hearing the words, “your child has autism.” It also doesn’t stop the many questions that run through my mind. “What now? What kind of life will he have? Can he go to school? Will he have friends? Will he ever be able to live on his own? What will happen to him if I’m not around to protect him?”
I know I’m not the only one with these questions. Recently released statistics from the Centers for Disease Control and Prevention (CDC), show that Autism affects 1 in 88 children and 1 in 54 boys. In Indiana that number is 1 in 83. And my Jacob is one of them.
One thing autism has taught me is not to be so quick to judge. Autism doesn’t have a certain look or behavior. A friend recently said to me, “If you’ve met one child with autism…you’ve met one child with autism.” And she’s right. I’ve heard many times from well-intention family and friends that Jacob doesn’t “look” like he has autism. Or, “he’s really smart, he’ll be ok.” I also am very well aware of the looks I get while in the grocery because he can’t stand still in line. Or while in a restaurant, if he begins to scream at the top of his lungs or quickly snatches something off someone else’s plate. Is it embarrassing? Yes. And I’m sure people say, “she needs to get her kid!” But my child isn’t unruly, he’s autistic. He can’t help the way he acts. And as heartbreaking as it is for me, I’m sure it’s incredibly frustrating to him.
Jacob is four and his language skills are that of a 2 year-old. Imagine not being able to express yourself. Imagine not being able to say when you’re happy or sad. It terrifies me that he could be hurting and I won’t know it. When I tell him “I love you” I don’t know if he really understands. But what I do know is I have to keep pushing forward.
As a parent of a child with a disability, I am his best advocate. I still know what’s best for him and it’s my job to ensure he has a quality life. There are many services and therapies available for children with autism, and since Jacob was diagnosed early, he has a better chance of overcoming some of the many challenges he faces every day.
I’m also his biggest supporter. As tragic as autism is for me, I have to remember this is happening to my son. His feelings are most important and it is my job to help him tap into those feelings and release them the best he can.
Last month we celebrated Autism Awareness Month but it is my mission to spread awareness year-round. This disorder is touching the lives of many and some don’t even know it. Early intervention is key. If your child isn’t performing at an age-appropriate level, get them evaluated. The best thing about therapy is it doesn’t hurt – it only helps. And it can change your child’s life for the better.
I still don’t know what the future holds for Jacob. He has a very challenging road ahead of him. But with patience, family support and lots of love, his future looks brighter every day.
