Friday, October 14, 2016


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.

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