Saturday, February 25, 2017

Living with ambiguity


“I wanted a perfect ending. Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. 
Delicious Ambiguity.”

--Gilda Radner


When I worked for a decade at Microsoft, "dealing with ambiguity" was a core competency--a trait that was valued and measured on performance reviews. It meant: How can you deal with the job when when things are not neatly packaged and ready? What do you do with the open questions? Are you paralyzed because all your steps are not yet known, or can you find (or create) a path?

I like to think that I've perfected this core competency in the years since. Parenting in general probably advances your skill at dealing with ambiguity, but parenting Soren makes dealing with ambiguity an everyday task. I've gotten used to the unanswered questions: Why did Soren regress so late, leading to a very late diagnosis of autism? Why did so much language disappear compared to other autistic peers? What is he capable of? Will he ever speak again? What will we do when he's a teen? an adult? Will he always live with us? What will he do after Erik and I have died? You can see that there are layers of open issues at any time. The way I've dealt with this ambiguity is to really embrace the notion of non-attachment.

Some liken non-attachment to detachment, or letting go. I like to think of it as not clinging. And believe me, I've spent so many months or years clinging to, insisting on, demanding answers to the open questions in our lives. But now, when people ask me about Soren's history of speaking and express hope that he may speak again, my response is that--truly--I don't care if he does. Does that sound harsh, uncaring, indifferent? I don't feel that way. I feel like this detachment gives me peace and a way of relating to the world as it is, not the way I want or hope it to be. It's oddly comforting to let life roll right over you like this. And in this way, I often pity those parents of typical kids, who have such regimented "musts" and timelines for their kids--it's not ambiguous at all. I have no idea what my kid can do, and when he will do it, so every little development is a huge victory and a surprise.

I should mention that this blasé way of looking at life hasn't come easily. There were so many months and years that I felt like I was fighting--fate, God, life, Soren. If my will alone could have changed things, I would have had a "cure" in seconds. I have made my share of deals, promising/hoping/demanding so much in exchange for a "healed" child. But my heart hurts less when I'm not yearning. And not yearning means that I'm more accepting and notice more about what's happening in front of my eyes, not what's in the past or in the future.

Try on non-attachment for just a little bit. Let your expectations go, but keep your delight when your child--or your life--surprises and amazes you. Without the cloak of expectation, this delight will be even stronger and more meaningful. I promise.

Delicious ambiguity, indeed.


Friday, October 14, 2016

Older

Soren was an adorable baby and toddler. I didn't really register that fact at the time; acknowledging his beauty seemed boastful, and certainly all mothers think their children are beautiful, right? But looking back, I see now how darn cute he was, and how his cherubic little cheeks and happy smile enchanted strangers and wooed family and friends.
At nine, Soren is lanky--okay, skinny, really. His teeth still seem too big for his face, and his pants are frequently falling down because he has no hips. He's strong, and handsome, and certainly still a charmer. But cute? Perhaps that's fading, which is totally expected for a 9-year-old.

Yet the waning of cuteness comes with a cost for a child with autism. Cuteness excuses lots of atypical behaviors. A chubby little 4-year-old who flaps or lies down in the middle of Safeway is odd but adorable. The 9-year-old who does the same things is outright weird, and a 15-year-old who might do the same things might seem just plain transgressive.

All parents mourn their child's babyhood to a degree, and they chant that (really annoying) adage about enjoying each day, for they grow up so fast. But losing my child's toddlerhood and young childhood takes a toll on him and on us in ways I wasn't anticipating.

Nine is awfully close to puberty. And male puberty is perceived as a bit scary in this society, especially when a young man acts in atypical ways that might seem threatening. I especially worry about Soren's puberty when it comes to the police. With a dad who is 6'8", Soren is bound to be tall. And he is bound to continue many atypical behaviors. And there's that whole nonverbal thing. If my big kid acts in ways that are not "normal," will the police recognize that that difference stems from his autism? Or will his difference make him a target (or a victim)?

It's easy to have compassion for the littlest ones. They are fragile, malleable--savable from their disability, perhaps. But an older child or adult with a disability is a strong reminder that the disability didn't go away, and that we don't really know what to do with disability--combined with puberty, sexuality, and physical strength--when it's in adults. It's as if the only way we know how to deal with disabled people is by infantilizing them, treating them as helpless little adorable babies. Our model doesn't work when it comes to disabled adults. We know that the pity and protectiveness that worked with small children don't work with adults, but we're not sure how then to relate to disability in its matured version.

Today I have a plea for those reading this. Keep that empathy and gentleness that you feel when you see a 2-year-old with an obvious difference. But add in extra respect and understanding as that adorable toddler becomes a strapping young man. Use an age-appropriate regard--without pity or fear--that you'd use for any 9-year-old, or 15-year-old. Or 54-year-old. Because in this house, we'll be there sooner than we think.

Wednesday, May 25, 2016

Our solitude


I came across this quote via Brain Pickings the other day:

We enter solitude, in which also we lose loneliness… True solitude is found in the wild places, where one is without human obligation. One’s inner voices become audible. One feels the attraction of one’s most intimate sources. In consequence, one responds more clearly to other lives. The more coherent one becomes within oneself as a creature, the more fully one enters into the communion of all creatures.

-Wendell Berry, from What Are People For?
Soren recently learned to pump on a swing. Whereas he used to drag me out in the rain to push him on our background swing (groan), now he signs the word for "go" so that I leave him on the swing alone. Yesterday he was out there for an hour or more, alone, just swinging, as high as he could. When I lured him back inside with a snack, he was so calm and so happy.

I'll admit I felt a little guilty. That's a lot of time left alone for a little guy who needs me to engage him, isn't it? I should be interacting with him, or he should be interacting with me, right? We should be doing something substantive, like playing with Play-Doh (fine motor skills!) while I'm modeling commenting via the iPad (communication skills!).

But all that time alone was actually kind of nice for me, too. I had a leisurely glass of wine. I listened to the radio. I puttered in the kitchen. And when Soren finally came inside and I saw his calm smile, I realized he had needed that time alone, doing one of his favorite things. Now he was ready to be with me.

He and I, we share this inner pull, this need to be alone to recharge. Our need for excitement and activity is pretty low. So his being out there, alone (don't worry--yard is safely fenced and secured now)--it's a good thing, for both of us. Maybe swinging is going to be his after-school thing, or what he goes to when he's inconsolable. I'm beginning to see how this time away from each other is what allows the two of us to later enter into peaceful interaction. After the solitude break, we are ready to really connect, whether that's playing together or just happily being in the same room.

There's a stereotype that autistic people are locked in the own world--that they like it that way and must be lured out of their isolation for their own good. But more and more, I see purpose in Soren's alone time. His private swinging is not avoiding people or wasted time; he's recalibrating himself so that he can engage with the world. Soren and his swinging are a great reminder for me that we all need time to be alone doing what we love so that we can be our best selves with one another. 

Wednesday, March 9, 2016

The physicality of my motherhood

My motherhood is a physical one. That physicality is how I get Soren to school –stuffing limbs in clothes, forced tooth- and hair-brushing, holding hands as we walk to the school bus. It’s about a lot of pushing and pulling and scrubbing while we do showers and toileting. It’s how he has fun (twirling, jumping, swinging, flapping). He prefers that I lie down right next to him as he tries to go to sleep. And above all, it’s how he experiences love and attachment to others. Being held upside by his dad is his idea of bliss. Physicality is how he experiences his world, and how I enter into it.

Unlike other moms who mourn what will eventually come as their children mature, my expectation is that I will have this physicality for a long time—maybe always--as I parent Soren. Simple requests like “get your socks on” or “put your dish in the sink” don’t happen without my modeling and following through, which means starting the sock-putting-on routine with my hands, and walking him to the kitchen and putting that dish in the sink, hand over hand, so that we have follow-through and consistency in his chores.

And I don’t see this changing much as Soren develops.

My body is telling me that this is a lot of work. I had to explain this situation to a physical therapist this week when he asked how my TFL/hip pain is impacting my daily life. How does it NOT impact my daily life? Right now, my body is essential to Soren’s functioning and happiness.

You know what’s great about physicality with your child, though? It’s a tool that always available. Roughhousing with Soren, swimming with him, and tickling him are ways that are quick and easy to make him feel loved and important. I can help others relate to him by sharing these connection secrets, too.

I don’t have to mourn losing this physicality, which isn't going away. And I do mourn the fact that it may never go away, even as we both age.

I remember my mom telling me when Soren was an infant that it was a gift to have such a close relationship to a baby because of the new, or re-introduced, world of physical connection. You are constantly touching and handling that baby, and that changes you. You learn how much your touch is a comfort, a constant, a way to keep that kiddo alive.


So as I chase my 8-year-old around the kitchen or give him even more foot squeezes, I’m in this gray space. Of being concerned, and of being thankful. I have a gift that most parents of 8-year-old boys don’t: of being connected, daily, to this being in a most intimate way. It's true that I don’t know how I’m going to do this when Soren is 12, or 16, or 30. But for today, he is the boy that I tickle. A lot.

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. 


















 

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