Autism Awareness. It seems such a funny thing to say, or to post or to celebrate. Yet this time of year and specifically today our feeds will be full of autism facts and quotes about awareness. And even 9 years after our families’ first diagnosis, I have just as many unanswered questions as I have pride in the strength of our community to grow. I still have a hard time accepting autism.
When I look back at how far we have come, it’s really hard to imagine a life before autism and how difficult it really was in the early days.
Not that it isn’t difficult now but I think I have some expectations now and in the early days it was the not knowing – that was the difficult part.
I have 2 children with autism.
Hunter was diagnosed not long after his fourth birthday. It was quite an ordeal. He had been removed from one preschool and placed in another, where he did amazingly well. Mr. Luke was the Hunter whisperer and really made such an impact on him that I still see things in Hunter that Luke worked with him on all those years ago.
We did diets, we did therapies – lots and lots of therapy.
Most boys his age were going to T-ball and Hunter was going to Occupational Therapy to learn how to play appropriately or speech therapy to give his monotone voice intonation.
When my son Benjamin was a little under 2 years old, I was told that he may never speak and he may never look at me in the face, Benjamin too was diagnosed with Autism. The day that he received his diagnosis was a defining day for me.
Instead of having my life “changed forever,” I grew obsessed with keeping it exactly the same.
I was not going to be a cliché and I was not going to be a statistic.
And yet I was.
And yet I am.
… and that’s OK.
I wish I knew that at the time. While I was reading everything I could possibly get my hands on about how to keep our family’s life normal, I forgot all about myself and became everything I always thought I wouldn’t be – defined by the role that I played in my children’s lives.
For our family, resources are very hard to come by. My child was non-verbal and I was able to get him Occupational Therapy, but not Speech Therapy. I was going to teach my child to talk – I just had to get him to look at me first. Holding his face to mine the weeks dragged into months and then one day, so minuscule I can’t even pinpoint it, he began looking at me and making eye contact. We began signing. With the help of a great friend, we were able to get him to sign about anything he wanted. Before you knew it the sounds which sounded like guttural utterance started to come from his mouth and then – he spoke. “Cracker.”
While at the time I had a fairly large support system, I still felt completely alone.
I felt that I was the only one in my situation. (How many times have we all said that before?) I had completely given up hobbies and activities that I loved because either the cost was extreme OR I felt completely guilty participating in the activities that did not in some way shape or form relate to the benefit of my children. Any activity that pulled resources from them, would make me a bad mother. Of course, none of that nonsense is true and yet I believed the story I told myself.
I was miserable – and the only place I felt good and normal was at work. There it wasn’t full of yelling and meltdowns – I was good at my job and felt like I was making a difference.
And yet, it wasn’t enough. It wasn’t enough because this motherhood business is hard, and we don’t always get to chose our path, but somewhere deep down inside of me a tiny voice said – enough.
Then it grew and became louder, and louder until I had no choice but to listen to it. I was done with this way of looking at the world. I was done forgetting who I am in the midst of the circus around me.
I was going to be happy.
I didn’t know it was going to be as much work – to be happy, it seems like such a little easy thing. But for me, it wasn’t. I had to actively change the way I thought and I shut out all negativity. It’s much easier now, with daily practice in gratitude. I actively look for the good in people – choosing to see the love before I experience anything else.
I’ve noticed, that living in THIS land of autism is much different than living in the land of diets and therapies and resentment over something that no one could have ever predicted or can change.
Therapies are important. Diet is important. But what’s the most important? That my boys have a mom with a positive and healthy attitude to let them know that even though it may get tough and it may get hard, we have the ability to be a light for others.
So if you are reading this and your child has just been diagnosed, stay strong.
It’s more important than anything else you can do. You got this mama, I believe in you – and remember to smile. Believe me, those small victories that most people don’t notice are worth all the tears that it took to get there!
