This “In Their Own Words” is by Laura Traw, who has a son with autism.
Sometimes I have a hard time watching shows regarding autism. No matter how I prepare myself, I find myself either turning off or walking away for awhile, then always coming back. My thought process always seems to be, “I am living this life. It’s too painful to watch someone else go through it as well.”
When HBO aired “Temple Grandin” (great job, by the way), my husband and I (on the west coast) watched the east coast feed while my best friend, who is in Tampa, watched at the same time. Periodically, we would text one another, something like this, “how r u holding up” Me: “so far so good”. Then, there is a point in the movie when the doctors told Temple’s mother that Temple needed to be institutionalized. I don’t remember the exact correspondence between the two but the message was all too clear. There was no cure, no hope.
Another text came through, “are you ok” No, I’m not.
I looked at my husband, tears streaming down my face. I felt like someone was standing on my chest; I couldn’t breathe and I could not stop this waterfall. What was happening to me?
“I can’t watch this,” I said, as I got up and started walking out the room.
He stood up and came over to me. I could barely make his face out, because my eyes were covered with tears. He hugged me, really hugged me – which was good because I felt like I was going to collapse.
I put my head in his chest and sobbed, “I just can’t.” Without hesitation he stopped the DVR, and said “It’s okay.”
It wasn’t “okay” – this is our life!
Maybe I’ll learn or see something that will help, that I can do, I’m thinking. Why was I feeling like this? I have to pull it together, I have to be strong for my son. How can I fight this battle if I can’t sit through a movie or a show about autism?
My phone vibrates, another text, “this is so good, what an amazing movie.”
Amazing? This isn’t amazing – nothing about any of this is amazing. I text back, “had to turn off, can’t watch.”
Does no one understand this? I know this is a great story and I know she has made such strides and is a voice of hope, reason and even understanding to this disorder.
What is wrong with me?
I am strong. I have been strong. I will, and have fought for my little guy and I dare anyone to tell me we can’t or he won’t be able to do something because of autism.
Why can’t I watch this movie?
I leave the room, utterly and completely defenseless of my own thoughts. I start doing laundry, anything to keep me busy. My husband comes in. I keep my head down, because I know I am going to start crying; I am weak.
I can’t be weak.
“I love you,” he says, standing in the doorway. I pour the laundry soap into the washing machine; I still can’t look up. “I love you, too,” I say, my voice quivering.
He sets my phone on the counter and there it is, telling me, “one new message.” I read it – “you are an amazing mom.”
That’s it, just that.
How is it that when I am so weak, my husband is so strong or although miles and miles apart, a best friend still knows just what to say?
I don’t know, but with that and about an hour to pull myself together, I sit on the couch with my husband holding hands. Sometimes I’m clinching.
We laughed, we cried and WE made it through the whole movie. It’s still hard for me to watch some things, but I am so thankful for these amazing people who open themselves and their lives up for the rest of us to see, hear, read and learn from. We are not alone, I am not alone.
It is because of such courageous people, my family, my husband and, yes, my best friend that I, too, have opened up about this journey.
These are raw emotions, me, us, our son. There are some moments when I feel like I just can’t make it one more minute. Then there are moments like the other day when I pointed to the color red and my son said, “RED.” Or last week when we were at the beach and he could not get dirty enough. We didn’t have to spend hours wiping every piece of sand off of him, or wash his hands numerous times to make sure there was no more dirt. A big day for us!
My heart hurts. I get angry and yes, sad. I am strong, but sometimes I feel defeated. I cry alone, because I don’t want anyone to see my tears. But, I open myself up because I know that I have a great family, wonderful friends, a husband that I adore, a son that is the love of my life; and yes, I am an amazing mom!
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to firstname.lastname@example.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.