Wednesday, October 21, 2015

When Soren went missing

Last month I joined the club that so many parents of autistic children belong to. Soren went missing from our backyard. A side gate was left open by an irrigation worker. In a matter of maybe two minutes, I realized it was too quiet outside, that the gate was open, that Soren was missing. With his blue scooter.

It lasted an hour.

I had to call my husband to tell him "Soren is missing." Let that sink in. Let that guilt percolate. How do you tell a father that you let his kid go missing? Yeah.

I called 911. They had to search our house, peeking in all the closets. I had to explain his disability in detail. No sirens or flashing lights, please. They quietly rallied their officers, even the parking enforcement folks. Silently. Everybody searched so quietly. Like Soren.

The neighbors wandered outside to see why there was a barefoot and distraught mom pacing. Even in frosty Seattle, they rallied.

The neighbors found my son. They found him. Alive alive alive alive.

He was wading in the waters of Green Lake, two blocks and a busy street away from our house. Drenched and happy.

He had ridden his scooter up the hill, probably to where we practice ordering hot chocolate with his iPad. He had crossed an incredibly busy street at rush hour. He was in the water and can't really swim.

He was alone. I'm not sure if he was lost.

What if. Indulge me while I spell out what goes through a mom's head: What if he's hit by a car. What if he drowned. What if he's hiding. What if he's scared. What if someone picked him up. What if he's terrified. What if he's dead.

And then odd thoughts that I'm embarrassed to remember now: Well, it finally happened. I can't believe I'm not wearing a bra let alone shoes. Should I sit down or stand up? Why am I so calm? What is wrong with me? I should be screaming. What should I do? Please someone, tell me what to do. I need a script. Like Soren.

I self-medicated that night. I just didn't want to sit with the what-ifs anymore. And the truth was that I had been through this scenario in my head. Erik and I had both imagined this situation multiple times before. Almost like we were waiting for when it would happen. Our worst fear fulfilled.

You know the stats, right?

  • Drowning is among the leading causes of death of individuals with autism.
  • Roughly half of children with autism attempt to "elope" from a safe environment, a rate almost four times higher than their typical siblings.
  • In 2009-2011, accidental drowning accounted for 91% total U.S. deaths reported in children with autism ages 14 and younger subsequent to wandering/elopement. Of those deaths, 68% were from drowning in a nearby pond, lake, creek, or river. 
  • Two in three parents of elopers reported their missing children had a “close call” with a traffic injury.
  • 32% of parents reported a “close call” with a possible drowning.
  • Children with autism are eight times more likely to elope between the ages of 7 and 10 than their typically developing siblings.
  • Half of all children with autism will run away and potentially go missing at least once before their 17th birthday.

I knew these stats. I sucked them in after every news story of an autistic child gone missing and almost always found dead in the nearby water. To be honest, in that hour that Soren was gone, I felt a nauseating resignation that our fate had already been decided, and this was just our time.


After we knew he he was safe and found, but before Erik brought him home, a police officer asked how I was going to address the situation with Soren. What? What a weird question. But I get it now. Was I going to punish him? And no. The answer is no. We talked about it with Soren, but we didn't make what he did sound scary or naughty. He's curious. He didn't do this to be defiant. He did it because the situation availed itself. So we stressed how when he wants to go to the lake, or on a walk (or anywhere, dear God), he needs to ask us.
Then we will go. Together. Please God, together.

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.

Monday, May 18, 2015

A trip to Paris

"When spring comes to Paris the humblest mortal alive must feel that he dwells in paradise."

--Henry Miller, Tropic of Cancer

I had the amazing privilege to go travel (alone!) to Paris earlier this month. My first time. It was such a treat to finally be in this city, where I could see Art at every turn, eat heavenly food, nap every day (you know that detail had to be in the list), drink wine with lunch, wander alone, shop for unmentionables, meet amazing new friends, and really notice the tiniest details. I felt twenty again (in only the best ways).

To make the trip even sweeter, when I got back, Soren greeted me with long stares and smiles, as if he couldn't believe that I was really home.

All of this made the trip a gift that I will never forget. 

Monday, April 13, 2015

Why I don't wish that Soren would speak

Some friends and relatives are confused when I say I don't wish that Soren would speak. I have to check myself that I'm not coping by denying my feelings on this issue, but no, I feel at peace with his not speaking.

I do, however, hope that he develops a robust way to communicate.

That distinction has been on my mind lately. I've used the words wish and hope with purpose here, because those two words can convey a lot about my reasoning when it comes to Soren's communication.

To wish is to want something different from reality. Wished-for things are often impossible, or at least unlikely. They indicate something that's not the way things are. I wish I could play the drums. I wish I could be a tennis ace. I wish I had paid more attention in college. (Those statements are all true, by the way.) But they express situations that can't happen, either because they are in the past or because, knowing my skills, they will never happen. (Wishing requires me to remember those lectures about the subjunctive mood--the ones in college that apparently I slept through.)

But hope--hope is something I can get behind. Hope is a positive. It's about the future, and it indicates something I intend to do, if it's at all possible. It's something that could happen if I get all my ducks in a row.

And that's where Soren's language comes in. Perhaps I do wish he hadn't stopped talking, especially on my bad days. But that's a futile exercise. That's the past, it's unclear why it occurred, and no one knows how to bring that language back. But I do hope that Soren expands his communication skills on the iPad. And hoping for that makes me feel optimistic, not sad.

And I think that's why distinguishing wishing and hoping is revealing to me. To wish that Soren would still speak is a selfish one. It's about me, my grief, my ease of moving through life with him, my clinging to the past. But a hope that he progresses in communication is about him. I want him to be able to tell people what he wants, but also what he thinks and how he feels. And this may just be possible, with the right supports (and technology).

I want Soren to be able to tell us when he's mad. I want him to type, to e-mail, if ever so simply. For his sake. This may take ten, twenty years, but I do still think it's possible.

I hope that Soren develops communication that serves his needs (and whims), not just communication that makes the lives of others easier. Soren is a typical seven-year-old in so many ways; I'm pretty sure that being able to say "I'm pissed at you, Mom" would be liberating for him. It would mean he doesn't have to bite his hand bloody when he is frustrated with my demands. Other kids get to say "I hate you, Mom." They are probably punished for saying so, but still, their lips can form those words. I haven't added hate to Soren's iPad vocabulary. Maybe I should. I'm sure I said those words at seven (and got a swift timeout, too).

I dearly hope that some day Soren will form highly inappropriate sentences on his iPad. If--no, when--that happens, don't be surprised that I'm smiling.

Monday, April 6, 2015

Mend my life

This has been a tough week. I got news that a big life change that I was hoping for isn't going to happen. I feel like I'm flailing, trying to get a grip on what my future will look like without this dream. I don't know what to do next or how to fill the hole that the dream had occupied. (Oh my, that sounded particularly melodramatic. It's kind of my theme this week.)

By chance, this poem appeared in some newsfeed or timeline of mine this week. I had read this poem before, but it seems to be especially relevant this week. I can't stop reading it.

The Journey
by Mary Oliver

One day you finally knew
what you had to do, and began,
though the voices around you
kept shouting
their bad advice—
though the whole house
began to tremble
and you felt the old tug
at your ankles.
"Mend my life!"
each voice cried.
But you didn't stop.
You knew what you had to do,
though the wind pried
with its stiff fingers
at the very foundations,
though their melancholy
was terrible.
It was already late
enough, and a wild night,
and the road full of fallen
branches and stones.
But little by little,
as you left their voices behind,
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own,
that kept you company
as you strode deeper and deeper
into the world
determined to do
the only thing you could do—
determined to save
the only life you could save.

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