I have no idea what I am doing.
When I first started reading about other families and their experiences with autism, I came across a lot of parents who seemed like experts. I read countless articles and blogs written by experienced mothers and fathers in a constant fight for their children. They had tried everything, with varying results, and all of them had the same advice: work hard and never give up.
I kept searching for different perspectives, because these stories overwhelmed me. I could never do it. I couldn’t even wrap my mind around half of what they were saying and doing. These stories are meant to be encouraging and inspirational. And they can be. But when the world of autism is all brand new to you, they can also make you feel defeated. They can make you feel as if you have already wasted too much time.
Sometimes I felt as if I were ruining my daughter’s chances in life out of my own selfishness and laziness. So I would try harder- and fail. Now I was ruining her life out of plain incompetence, as well. And still there were more and more parents saying that their children were succeeding because they never stopped working with them and trying all the options. I always seemed to be falling short of other parents. I did feel like giving up. Except, I wasn’t exactly sure how I would even do THAT.
Then I figured something out. I wasn’t failing at being a parent; I was failing at being someone I’m not. I was falling short of what someone else needed for success.
It’s a personality thing. Some people thrive on actively doing something. Anything. They need to know that they are not helpless. I mean, everyone likes the idea of having control- but some people need to be actively solving the problem in order to keep sane. They feel better if they know that every stone has been turned. It makes sense. These are the same people who have trouble just sitting around in general. They are usually outgoing, have a lot of energy, are fantastic at multi-tasking, and they don’t spend too much time inside their head. They take action. They keep moving forward. Shouldn’t everyone be doing this for their child?
I spend a lot of time inside my head. Sometimes I get stuck there, and time kind of gets away from me.
Like right now.
Turns out I just require a different approach. I kept searching for stories from people like me- and I did finally find them. Of course they existed, they just had quieter voices. They weren’t always making headlines as advocates, or leading their local autism society. They weren’t posting how-to videos on speech therapy, or giving an interview about new legislation we should all be supporting.
But they were putting their thoughts and hearts out there. They were giving voices to their children and making the world of autism seem less foreign. They were leading everyday lives, and making small (but important) discoveries about the realities of autism and how we can relate to it. They were over thinking themselves sometimes into doubt, sometimes into hope. But I understood them, and they made me feel differently about things. I started to trust my instincts again, because other (more experienced) autism parents were feeling that way, too. I started to find my footing on this journey.
I don’t need to have control over autism. I just need to understand it better. I would prefer to achieve both things, but the latter is what will keep me sane. I don’t need to do everything- I just need to do the right thing. And so I pay attention. I know everything I can about my daughter. I learn every detail possible about my options. Then I use that knowledge to map out a plan that works best for us. And I do constantly look for support of those choices. After all, that’s the whole reason I searched for so many perspectives in the first place. I needed to feel like I was traveling in the right direction. Not every direction.
Some of us waste a lot of time trying to be someone we are not. We are all different, and we need each other’s strengths to figure things out. I appreciate those “mommy warriors” whose experiences I can pick apart, analyze, and then decide which direction I want to go next. I need them to show up and speak out; to be the action part of advocacy and change. I admire their ability to do the things I cannot.
And in those rare moments when they are catching up on their reading while going to the bathroom or something- I hope one of them might be encouraged by a new perspective that relates to their life. The type of perspective that can only come from the mind of someone who spends too much time trying to make sense of the world. Maybe it will give them direction, and the circle will just keep going.
Every leader needs a good speech writer.
So, what would I say to someone who is feeling overwhelmed by the uncertain future a recent autism diagnosis has thrown at them?
I would tell them that all possibilities are still on the table, so don’t waste time questioning past decisions, giving up, or feeling guilty. The dreams you had for your child may change, but they will be replaced by new ones. You will still experience the hope and pride of watching them achieve great things in life, maybe even more than you would have without autism. But you will not have to become a different type of person. Find your way without losing yourself. It won’t be as hard as you think it will. As a matter of fact, it will never be more difficult than what you are going through right now. You are just not far enough into this journey yet. You are afraid it gets worse. It doesn’t. I promise, it gets better.
It gets so much better.
I have no idea what I am doing. But I am getting better at this. I try not to judge what another person needs to be successful on their journey. I try not to judge myself for not having all the answers, or the energy. I keep reminding myself that every move I make is not a life or death moment.
As long as I continue to love my daughter and learn from my mistakes, I know I am doing something right. Even if that is all I know, at least I am going in the right direction.