October 13, 2014

Seen

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 2:52 pm by autismmommytherapist

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I pull Zach in close to me as we lean back into our pew, letting the sounds of the organ cascade around us as my son reads a book about Noah. There is the usual chatter of people finding their seats for the service, but as I relax even more I hear the unmistakable sounds of vocal stimming from a few rows back, and I smile. Soon Zach is called up front for the children’s portion of the service, and out of the corner of my eye I see an elderly man with what I guess is his adult child sitting next to him, rocking slightly. In the flash of a second I see that the sounds are emanating from him, then my hand is tugged as my son wends his way through adults and children to the front of the church.

After dropping my son off in the education center I return to my seat, and listen as the sounds of someone else’s son punctuate the sermon and our singing. All too quickly the homily concludes (I confess I consider church to be part of my “quiet time” and I relish that peace,) and we are dismissed and asked to keep the faith. As I slip from my seat I see the man and his son slide in front of me, and together we go against traffic as we head toward the back exit.

At one point we come to a complete stop, and I am able to lay my hand on his shoulder. He turns his head back to me while never releasing his grip on his son. I say, “I have two boys with autism. He did great today. You’re doing great today too,” and there is enough time for him to return my smile, say a heartfelt “thanks,” and continue on his way. I admit, just that one exchange made it worth the hell of dragging my tired and grumpy boy out of his warm bed for church this morning.

I just wanted him to know somebody saw him, and got it.

I admit, I used to really need people to “get it” about the boys, particularly when our eldest son, Justin, was diagnosed ten years ago. Although there was some awareness then, people still weren’t as cognizant of the struggles and triumphs of autism as they are now. I often found myself challenged to explain how although some of the things we were experiencing with Justin were phases all children go through, many of them were not, nor would 98% of the population endure them for the lifetime of their child.

I soon found I stopped trying to explain our family, and found solace in autism support groups as well as the friendships I made in the autism community. For me, the sticking point was that I could never fully divulge how sad it made me that I would be gone for half of Justin’s life, unable to comfort him, protect him, or just spend time with him after my death.

I came to see that unless you’re in the situation it is impossible to fully comprehend it.

But I did make friends with a number of other autism moms (and dads) and learned the glory of being able to say “he hasn’t really slept for two weeks” and knew they understood I was lamenting the present, but also worried that this was our permanent future. It was an incredible release for me to find these companions, to not have to explain, to receive their unconditional empathy.

I truly hope the gentleman in our church service felt all that with just the touch of my hand.

There’s still so much controversy within the autism community, although I do think we’ve made much progress since the early days of autism, and even since Justin was diagnosed just a decade ago. There are still so many “camps”- neurodiversity, parents searching for a cure, and everyone in between. It can be daunting at times to know where we fit in to this wide ocean of opinion. I know I often float back and forth, take a bit from one side, weave it into my experience with the other.

But no matter where I stand, I know I want to be seen.

When I’m out with Justin and he’s flapping or saying “eee” at the top of his lungs I want people to look me in the eye and smile, to know that my son is fully present in his moment, and happy.

I want to see the parents hearing their son speak for the first time.

I want to see the single mom struggling with an adult autistic son whom she’s worried might hurt her, or her other children.

I want to see the child who had their first successful outing without behaviors and loved every minute of it.

I want to see the parents anxious out of their minds with the child engaging in self-injurious behaviors.

I want to see all autistic people and their families. I want them to be seen, to be heard in whatever glorious manner they’re capable of being heard.

I want us all to see one other, to offer each other comfort, companionship, and strength.

I don’t know if I’ll see the gentleman from church again, but I hope he knows he’s found a safe haven in our services. He was seen, his son was heard, they both were welcomed.

In the end, that’s what all of us deserve.

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2 Comments »

  1. Such a beautiful post ~ I want all of this for you and everyone else and more! I love that you reached out to that man as I know it meant the world to him. You are so special ~ we are all blessed to know and to love you! Thanks for being you and for being a beacon of hope, perseverance and love to all! xo


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