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.

Cabo break

We were lucky enough to spend a week in Cabo with dear friends, their two great kids, and Lindsay, our former nanny/therapist. It was such a treat to be with fabulous travel companions who are patient, fun, and great cooks. I'd like to write a bit more about the trip, but really, it can be summed up like this:

Erik: Swim, eat, drink

Jenny: Sleep, eat, drink

Soren: Swim, iPad, eat

And that's really all there is to tell. It was such a rejuvenating trip for all of us (aside from the flight down and the immigration line on the Cabo side, which I am willing out of my memory). What fun it is to see Soren so very happy. 

can't. stop. smiling.

Soren learned to do somersaults, even with his life jacket on.

The beach was a bit overwhelming. 

And there's that whole sand-eating thing.

When you need to decompress, try an iPad under the covers.

My take on autism awareness & acceptance

Confession: I've never understood autism awareness.

Today is World Autism Awareness Day, and there are a lot of blue lights flicked on and puzzle pieces being thrown about. You may have seen  blue profile pictures on your Facebook feed. But this day and this emphasis have always seemed short-sighted to me. Be aware of autism? OK, done. Lots of people know about autism. Now what?

Some autistic people and their families have altered this to be a day of autism acceptance. That's better. But still something about the term "acceptance" rubs me the wrong way.

On their own, without the commercial and feel-good baggage that we've tacked on to them, awareness and acceptance of autism are fine goals. But they are not enough, and I find a day dedicated to either one of them lacking and maybe even offensive. Here's why.

Autism awareness isn't sufficient, and it probably makes little difference in the lives of today's autistic people and their parents. So you're aware of autism--the statistics, the symptoms, the latest news stories? Good for you. This doesn't change anything for us.

I'm uncomfortable with the way Autism Speaks has co-opted this day as its most public-facing campaign because of what awareness really means to that organization. Its purpose is to make the public aware of the "public health crisis" that autism is (presumably to gain political and financial support for prevention?). Autism Speaks' Call to Action read just last year, in part:
"This is autism. Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future." Puh lease. Spare me the panic and the life-is-over narrative.

I don't think that a so-called crisis has anything to do with current autistic children or adults as individuals.  A "crisis" speaks to prevalence numbers, trends, and costs to society. Cures. Prevention. Oh, and all the prenatal ethical issues that prevention brings up. You know what I'm talking about there, don't you?

I don't want or need a cure. Maybe because a cure is too late for our family, or maybe because I'm still not sure where autism ends and Soren begins. Maybe because I don't know what I would have done if I had seen an autism marker during Soren's amniocentesis. Maybe because it doesn't matter.

Autism awareness wasn't started to make the public aware of your child or my child and how we can make this a more humane place for them to live. It's not about how to include autistic individuals in everyday life or how to see their unique strengths. Until recently, Autism Speaks' version of autism awareness used scare tactics ("1 in 88 can't wait!") as way to encourage funding, and that funding goes primarily toward research--future stuff, not ways we can make a difference today.

So, many in our community have broadened this awareness to be acceptance instead. At first this seems like a great move, one focused on present autistic individuals and incorporating them into society. But is it really our place to accept them? How condescending--apparently it takes acceptance by the non-autistic world to grant a place at the table to autistic individuals. What if we had a day to accept African Americans? or female pilots? or lesbians? Do you see how this is paternalistic? Who says we get to be the ones to deem other people acceptable? How pompous.

And what does acceptance mean, really, without context? Accepting the existence of someone else doesn't mean working to integrate them fully into our community. Just accepting African Americans isn't the same as ensuring they have full access to education, housing, and workplace advancement. Just accepting the existence of female pilots doesn't mean that you don't make a snide remark to your seat mate when you realize a woman is flying the plane that you're on.

We need a day, an effort that goes one step beyond acceptance. I don't know what that word is, but it looks like making an effort to include autistic people in all aspects of our community life. It's making accommodations when it can make life easier for a huge part of our population. It's about making education and job opportunities a priority. It's about planning now for housing issues for autistic adults and autistic seniors.

So that's why awareness and acceptance are not enough. We can do better. And here's what I do want; here's what a day dedicated to autism could emphasize, just to start:

• Softening of your heart. Yours. And your kids'. But it starts with you. I want you to embrace the quirk, the anxiety, the difference that you see. Actually, I'd love to see a gentleness toward all difference. And this means putting pity--for autistic individuals and their families--on the back burner so that you can see people in all their dimensions. It's fine to feel compassion about the difficulties that autistic individuals and their parents face. Yes, this road is daunting. But remember that we love our children as they are, and we want you to love them that way, too.
• Funding for and focus on special education--groundbreaking, out-of-the-box thinking about what our kids need, how they learn, and how they can be integrated into our schools. And that's what we want for all our kids, isn't it? Too often special education is driven by lawsuits or threats of them. I'd love to see school district administrations lead the way in making educating our most vulnerable children a priority. (Just so you know: In Seattle, 14%+ of public school students are eligible for special education.) 
• Funding for long-term care, occupation, and housing of our children--and as those children become adults and senior citizens. This would mean that parents don't have to worry about trusts and wills and faking that our child is destitute so he can draw from state and federal funds when he's an adult and/or when we're not longer here. 
• Respite care for parents, paid for by the state in a timely manner. (Washington's DSHS has a significant waiting list for its individual and family supports program.)
• Reasonable wait times to get autism diagnoses. Wait times are typically 3-12 months long in the Seattle area (!).
• Self-reflection. How are your judgments about acceptable behavior, valuable employment, and what's normal in general impacting others? 

Maybe we can change this day to Autism Advocacy. Or Autism Action. That's what I'll be working for.

Thanks for listening. I welcome your feedback on this issue.

The group at the mall

“Invisible threads are the strongest ties.” 

― Friedrich Nietzsche

I knew the moment I heard him that the boy was autistic. Was it the cadence, the sing-song quality to his voice? Did I even hear any words, or was it just babbling? I don't remember. I just know that it sounded so much like Soren. I knew in an instant.

I was at the mall today (don't judge). There was a group of ten or so people: special-needs kids who were maybe 10 years old and their aides. They were having lunch in the food court of the mall. And I knew right away that this was a group like Soren will be in in a few years. Probably from a self-contained classroom, with quite a few aides and lots of happy but decidedly different kids.

I'm impressed that this was the destination. It was chaotic: lots of people, stores, lights, new experiences. Way too many mall-walkers. One young man in the group really needed to pace, so his aide followed him around the perimeter of the food court, holding his hand, looking like she does this stress release with him a lot.

I was shocked that I found myself staring at the group. Yep, staring. I couldn't believe it either. I can't stand it when strangers stare at Soren and me when we're in public places and maybe making a little too much unconventional noise. But I was staring in a different way--with recognition.

I felt immediate camaraderie with this group, like these were my people. It's the same way I feel toward Soren's classroom peers. It's almost maternal, this affection for the kids that I see in his class every day. There's such a soft place in my heart for them; I swear I'm their favorite aunt. I wonder if this is what their teachers feel, too.

Of course I stared in defensiveness, too. I was just waiting for some random mall teenager to make a snide comment. In my mind I dared someone say something or practice their best eye-roll. I was ready with a little condescending lecture (which didn't need to happen, thank goodness).

And I stared out of curiosity, frankly. I was so intrigued at what Soren and his cohort will look like in a few years. Ah, so this is what a 10-year-old Soren will be like. The tics and sounds are a little more awkward, perhaps, to others. The difference is more obvious. That was a little sad to me--the fact that my child will be that much more noticeably different and subject to ridicule (or just staring). But the similarities to Soren and his peers now are striking. The kinetic energy, the sounds, the rhythm of these kids are just like Soren's. And frankly, I don't have many chances to see what older Soren will be like. So I stared. Or rather, I tried to stare without being noticed.

I wondered what I would have said if one of the aides caught me staring over my Americano. Maybe "I have a kid like this too"? Nah, that sounds offensive and condescending. "I get it"? Perhaps. Or maybe just a knowing glance would have covered it. I think such softened eye contact would mean everything to me when I'm in a public place with Soren, being brave and feeling out our differences.