Wednesday, June 17, 2015

Five years on

Soren, almost three

Soren, almost eight

The inklings started five years ago, around this time. Something wasn't quite typical with our almost-three-year-old. At first it was just a mild speech delay, detected by a preschool teacher. He went to the local birth-to-three clinic. They ruled out autism and intellectual disability. But it was more than the speech. I knew.

The signs increased quickly, a new or exaggerated "symptom" every week. The occasional babbling instead of speaking. Driving his toy lawnmower in circles, over and over. So much less talking than his peers. And no pretend play.

It's so lonely to be suspicious that something is off but to be told by doctors and therapists--I'm talking multiple doctors and specialists--that there's nothing really wrong.

At a certain point, while watching my almost-three-year-old kid tear out the pages from most of his books, I knew. It was autism.

Now his behavior matched almost everything about autism that I googled. While he played outside, I collapsed on the kitchen floor, wailing. It was the grief, the betrayal, the anger. The horrible realization that one of my greatest fears of parenting was coming to be. The overwhelming sadness. My whole world colored gray.

I remember literally pounding on Erik's chest on one of those early days, sobbing that "I don't know where to put all this pain." Those words just fell out. I still don't know what that phrase means. I suspect that the pain felt so great that my whole body and mind couldn't contain it all. It was overflowing, and I didn't know how to function when all I felt was pain spewing out.

We've come so, so far, both Soren and I. But when I remember this autism journey, it is remembering what changed in my life. That's self-centered, I know. But I think it's so vital that this message get communicated to parents of newly diagnosed children: This is a journey, an evolution, for you, too.

I know it's controversial in the autism community to talk about the grief that parents of autistic people feel, especially upon diagnosis of their child. It can cast the child as a tragedy, and it makes the story about the parents' grief rather than about the child's reality and humanity. But this is my story. I need to be able to tell you, the parent, that you will feel awful because this is new and scary and so very much not what you envisioned. And I need to be able to tell you that there will be healing. You will find joy. 

Our life now is calmer. I'm not panicked about how many dozens of hours of enriching therapy Soren is or is not getting every week. I'm confident that we can take breaks from all that work, since simply having fun is pretty darn therapeutic.

I no longer hate autism. I may hate some of its impacts, like anxiety and sleep theft and crazy GI stuff, but I'm realizing that this is who my child is, not what he has. I love that I can tell when Soren is deliriously happy because he jumps and giggles in a way that's uniquely his. That quirk is part of who he is.

And I'm out of shits to give about looking odd to strangers or breaking all the Parenting Rules. (And really, that freedom is a gift that I wasn't expecting.)

So for you parents just stepping on this path, this is for you. I want you to tuck this list in a safe place for when you're done sobbing and ready for just a little peace.
  • You will feel better. You will. I promise.
  • You will change. You will be both softened and hardened. You will have an incredible new empathy and lack of judgment--of differences, of parenting styles, of people in general. And you will understand what "mama bear" really means as you advocate and fight for what's right for your child.
  • You will lose yourself for a bit. Oh, honey, probably for years at first, as you hurry up and schedule therapies, deal with school districts, and address challenging behaviors that you keep secret.
  • You will come back to yourself. You will reach back to what is good and important to you, to a revised self probably, but you will be able to think of things other than autism. The world will gain color.
  • Your child will still be there, waiting and wanting to be loved, as only you the parent can. The diagnosis rocked your world, but it didn't rock his or hers. 
Oh, this journey. I have never been so wrecked. I have never had to rebuild myself so much. And I am whole now. You need to know that.


Give Me a Nap | Template By Rockaboo Designs | 2012