My Greenlake in November

At no other time (than autumn) does the earth let itself be inhaled in one smell, the ripe earth; in a smell that is in no way inferior to the smell of the sea, bitter where it borders on taste, and more honeysweet where you feel it touching the first sounds. Containing depth within itself, darkness, something of the grave almost and yet again wind; tar and turpentine and Ceylon tea. Serious and lowly like the smell of a begging monk and yet again hearty and resinous like precious incense.

― Rainer Maria Rilke, Letters on Cézanne

pumpkin

We've had a full month: a pumpkin patch field trip, chest colds, school IEP meetings, lots of work travel for Erik, baseball, a halloween zebra, and the return of Seattle rain. I love this time between when school starts and when the holiday madness begins. 

His privileged life

Here was my pre-kid parenting fantasy number 124: Erik and I would pull our elementary-aged children out of school for a year and take a work sabbatical to travel the world, simply and mindfully, to show the kids what's what in the grand scheme of things and how privileged they are. The year would be pivotal, especially to the kids, whose views of others would be profoundly changed and softened.

Okay, that trip will probably never happen. Setting aside the logistical nightmare that it would be with a special-needs kid, there's the big issue that I don't think that my fantasized perspective shift would sink in for Soren intellectually. But I'm well past the stage in which I feel like Soren's life is a tragedy because I don't "get" to do the parenting bucket lists items that I had dreamed about. This life is our Normal, and sometimes I forget that it's so different from everyone else's normal. And you know what? It's a life full of privilege, even, and especially, for Soren.

Yes, he has profound autism, anxiety, a sleep disorder (now on hiatus!), some funky GI things, and behavior challenges. But not a day goes by that I don't remember that he has so much that makes his life and our lives with him just so easy. We don't need an (elitist and expensive?) trip around the world to understand this. It's ridiculous just how much he was just born into (and we his parents were born into). We've done nothing to deserve this. He's done nothing to deserve this. But he is privileged. And his autism just magnifies this privilege. He is:

• White. African-American children tend to be diagnosed years later or are often misdiagnosed.
• Male. If he were a girl with autism, he probably would have been diagnosed even later, since providers know more about males with autism and therefore tend to look for those male-specific symptoms.
• In a financially comfortable family. We can afford treatments that aren't covered by insurance. For example, Soren's language therapy--using an iPad to communicate, which is a critical skill--doesn't get compensated by our popular insurance plan because he's "aged out" of that benefit (at seven!). 
• North American. Most research on autism is focused on more affluent western or Asian countries. Treatment is often scarce in developing countries, and there may be a more prevalent public stigma about the disorder.
• In a stable home life. He's not homeless, a victim of abuse, or impacted by substance abuse. He lives with two present parents. We are all physically healthy.
• Supported fully by an understanding family and community. He has an extended family that gets it, and a community that (generally, at least) doesn't blame him or us for difference.
• Living in an urban setting. We have ready access to evidence-based autism resources. We don't have to drive an hour for therapy.

Yes, autism can be challenging for us, and for him. But I've seen what happens when you don't have this privilege that we have, and disability can be so much more impacting and even devastating. I've seen a single mom with cancer struggle to keep up with her autistic kids. I've seen parents with what is probably untreated mental illness try to manage complex behavioral outbursts and feeding disorders in their autistic kids. I've seen a little boy ceded to a state group home because his parents just couldn't handle his profound autism. I've seen so, so many kids who don't get private speech and occupational therapy, let alone enriching summer programs--kids who could really flourish if they had a little extra support. There is simply no money.

We are lucky, and I am increasingly disturbed by this privilege. This parenting journey is hard enough with all that we have. I grieve for the families whose lives are so much more difficult, through no fault of their own. I am furious at medical and educational systems that don't take care of our most vulnerable people. 

If Soren were typical, I wonder what kinds of conversations I would have had with him about his privilege. In my fantasy parenthood scripts, I imagine that I'd regularly tell him and show him how his privilege is completely unearned. We'd have dinner conversations about what his obligation is to his community because of that privilege and the damage it has exacted. There would be weighty decisions about what school we'd choose to make sure he operates fully aware of the diversity in his own city. And then there's that trip around the world. 

But none of this happens. Our conversation about privilege can't happen with Soren.

At least I don't think it can. Maybe, though, Soren is getting a message about how to treat people. About how being an Other feels. About never, ever making assumptions about a person's abilities or thoughts or feelings. Assuming best intentions. Seeing someone as an individual, not as a representative of a community.

I wish I could explain to him more about his fortunate and unearned place in this world. But maybe he already knows so much more than I do about privilege, expectations, and being an outsider. I continue to be humbled by how much this child teaches me about my assumptions.

Comparing

A child of one of my friends plays chess. He's seven.

Soren's cousin paddleboards. At seven. Another cousin learned to ride a bike at two.

At seven, Soren is making progress in putting on his socks. He can almost trace the letter S. He's sitting at the table to eat. And I am so proud of him.

What's interesting to me about knowing these tidbits about others is that I feel absolutely no resentment or jealously. These are just facts about other kids. For some surprising reason, I don't immediately jump to comparing and contrasting other kids with Soren.

Is this equanimity just growth as a special needs parent? Have I just moved along in the journey, well past grief and then comparison, to a sort of peaceful mindfulness? Perhaps. But what strikes me is that I can be this non-judgmental about Soren when this lack of comparison is so foreign to me.

As long as I can remember, I have judged myself and oriented myself in comparison to other people. Other people helped me know where I stood in the world, and whether to be proud (college grades) or ashamed (high school PE) of myself. My self-image is totally wrapped up in comparison. How far off the norm am I? Once I find out, I know how to think of myself.

I got good grades in high school and college. But it wasn't because I had sparks of understanding or creativity. It was because I figured out what the other students were doing for their term paper, for example, and I did just one notch better. I knew how to do that paper only by comparison. There was no passion about the subjects, just a sort of formula to do well. Is it any wonder that I remember very little about my college classes, even in my major?

But with Soren, I compare him only with where he's been. There is no timetable. There are no typical developmental milestones. I've thrown these out, along with the brand-new but outgrown underwear that Soren is just not ready to use.

And what fun it is to have pure joy and pride in something Soren can do. It's just about him, not about how he stacks up. He can put on his pants now! He ate a bite of chicken! He went to school without crying!

Man, I wish I could experience this independent view of myself the way I view Soren. Could I give a speech, write a blog post, dress for a party without comparison? And what if this freedom allowed me to make grander life plans that I'm so hesitant to make because I don't have models of such activities?

I'd love your feedback about this comparison issue. And I'm going to really work on not molding my thoughts in response to yours.

coffee man

For years, he trudged down our street. Tall, paunchy, and stooped, he walked like a two-year-old walks: a little too much scuffing the sidewalk, and as much side-to-side movement as forward movement. As if he was begrudgingly following his mother. But he was always alone. I couldn't say how old he was. Definitely past his 20s. But 30s? 40s? 50s, even? His idiosyncrasies made it hard to tell.

He walked to get coffee. Every day. I saw him at the local coffee shop, both hands around his paper cup. I was never around when he spoke, but he must have told the barista his order. He sat in the same chair at the same table, looking at something invisible a few feet in front of him.

I watched him with a disengaged bemusement, perhaps even a little disdain. How odd he was. How could one man walk so slowly? Was that paunch getting bigger? Was it safe to walk so near him? I remember crossing the street to avoid getting too close to him on the sidewalk.

We moved away from that area three years ago. But today I stopped in the grocery store near that neighborhood. I ordered an iced Americano at the in-store Starbucks. And then I saw him at the small set of bistro tables. The same glassy stare, the same sloped shoulders, the same gripped coffee cup.

But a different flash of recognition startled me. He's now familiar to me in another way. I see it now: He is probably on the autism spectrum, perhaps with some intellectual disability. This could be a glimpse of Soren's future.

I surprised myself by how different my view of him became in a split second. I wasn't filled with disdain; I felt compassion, even a weird camaraderie with him. And I felt ashamed of the way I viewed him for so many years.

I'm mad at the person I was. She was judgmental and haughty and as much of a bully as any seventh-grade tormentor on the school bus.

People like this, like I was, are probably all over my community--in stores, Starbucks lines, watching out their homes' picture windows. They stare, judge, maybe internally mock my Soren. They wonder if he's violent and cross to the opposite side of the street. I can feel their judgment. I pray that Soren doesn't pick up on it.

And then I know there are others in our community who take the time to see us--not just the flapping, the wiggly body, the grunts of protest as we wait in lines, but the whole picture. They acknowledge us as a family that might be having a hard time navigating public spaces, or maybe as just a family that is a bit different. They may feel pity or maybe just empathy, but their first thought isn't disdain. I know that there are these kind people because once in a while I see their smiles or knowing nods. I can feel the difference; I know they see us, not just our quirks.

Coffee man, I'm so sorry about the old me. I see you now. You must live close to here. I bet you like coffee as much as I do. This coffee shop makes the best cup, don't you think? Man, you're tall. I have a little boy who is tall, too. Maybe he'll be as big as you some day.

I left the grocery store with this plea, to no one in particular: Please, dear stranger, be bigger than I was. Be better. See our children--and the adults they will become--with gentle eyes.

Just a snack

A vignette from an after-school snack on a sunny day. Sometimes I forget to notice how beautiful this boy is.

Getting to solutions, insisting on the means

Years ago, when Erik and I were both working way too much, we had a messy house situation. Neither of us had the time or desire to clean in our infrequent free time. You should have seen the kitchen sink. Oh wait--we couldn't.

Erik's solution: hire a cleaning person. As soon as he mentioned this, I hated the idea. Oh, it was probably because it came wrapped up with issues like gender roles, money stuff, time management. But I think the main reason the idea was offensive was because it wasn't my preferred method of achieving a clean house. I wanted us both to do the housework equally. In my mind, this would have shown the ultimate love and respect from my husband while also resulting in a clean house.

In the end, we hired a cleaning person. I gave up my fantasy about a 50-50 weekend cleaning partnership because the real problem was the dirty house. It wasn't (and shouldn't have been) about my chores-as-respect hangup. Because I can't both bitch about the problem and then reject the clearest path to its solution. I can't choose the method of getting to the result if I want to claim that the result is what I'm truly seeking.

This issue has cropped up again for me, this time with Soren. He's been getting floppy, resistant to my dressing him or combing his hair or brushing his teeth, and this sometimes leads him to some aggressive hair-pulling and scratching. I find myself getting so mad about this. I know that his aggressive behavior is probably about something other than his disliking me, but my gut reaction is to be hurt. I can't believe after all nurturing, dealing with bodily functions, and just general, well, parenting, that he can be so aggressive with me.

I know that preventing the aggression is my ultimate goal. But I want Soren to feel contrite, too. I want him to feel something like regret or shame or even a little pain about consequences for pulling my hair. Again, I want to dictate the path that we take to get to the solution. And you know, that's just not fair. Because the path involving his regretting his behavior is not the path that's going to lead to eliminating that behavior. As many parents of autistic kids will tell you, the whole idea of a time-out to reflect on undesired behavior is utterly lost on their kid. (And some critics question the impact of time-outs in general.)

Eliminating the aggressive behavior requires me to figure out why Soren is finding my managing his dressing, tooth-brushing, and hair-brushing so taxing that he responds the way he does. I have a feeling it's about control, especially of his own body, and maybe some sensory overstimulation of some sort. It's my job to figure out the cause and how to either reduce that stressor or help him gain the skills needed to deal with that stressor. My hope for him to feel crappy about hurting me should not be part of the equation. It's my fantasy, and I'd feel a great sense of resolution if it could happen this way, but that can't be part of the mix when it comes to parenting this child. And really, dictating the steps required to achieve a resolution with any person just isn't fair, is it? I'm learning this lesson very slowly.