Whose story?

In looking for something in our garage, I found a gem: a little green notebook titled "baby's health." It's the only semblance of a baby book that I kept for Soren, since I was pretty overwhelmed with postpartum depression and anxiety for most of his early months. So this little health notebook was was where I kept Soren's earliest and only records. There are glimpses of his first days--when he pooped, peed, and breastfed. The maternity ward's bracelets are there for both of us. The notebook is overly detailed especially at first, and I have to laugh at how much it reflects the early days of a first child. At first I wrote in it constantly, and then I weaned myself to every week and then every medical checkup. And then at year 3 or 4, the entries stop. I probably misplaced the book when we moved to a new house.

In advance of Soren's 8-month regular medical checkup, I had written a reminder to myself that I had forgotten. Soren is banging his head--ADHD? So I must have asked Soren's pediatrician about ADHD. Many kids bang their heads, but now I know that many more autistic kids bang their heads. I had forgotten that Soren did this. Maybe it's a tiny peek into what was truly distinct about our boy way back then; perhaps his autism may have shown itself much earlier than I first noticed it and then had it confirmed, at about 2.5 years through 3.5 years.

And last month, in collecting some books for Goodwill, I found something that gave me pause. Scotch tape on some toddler/preschool books that Soren still reads. The tape marks the weeks when I finally started to think that something was atypical, but surely it wasn't when Soren started to be atypical. What stands out is how careful those tape sutures were, as if I was trying to make the rips invisible to others. I taped on both sides of the page, and got that little overlap of the rip mended just right. And I distinctly remember doing this taping as I sat on the floor and fretted, probably 7 or 8 years ago. I was horrified that he kept ripping precious books. It was incessant. Now I know that this ripping was probably a sensory-seeking behavior, which is common in autism. And now it's no big deal that this occasionally happens. Today I think, how fun would it be to just rip leaf upon leaf, hearing that crisp sound and making tiny shards of paper to cover your bedroom floor? And how weird it might have been for Soren to have seen me, well, freak out completely about something that seemed innocent and fun to him. I probably yelled, scooped up the books (but not the boy, I regret now). I knew that something was amiss. I was starting to grieve.

What I realized after I saw these two artifacts was: These are milestones that are mine, not his. I can't write his story, so I write mine. I write about the grief (or surprise, or exhaustion) that's mine, not his. Perhaps he has always been autistic, but I grieve when I notice the atypical behaviors. Soren may not be grieving at all!  Ours are two different trajectories, and I need to remind myself of this. We are not on a joint journey, and I know I thought of it that way before.

I'm learning, slowly, what it means to be a parent of a disabled person, and how that means I don't speak for my son. I can guess about his experience, but I could be so far off. He has a whole world view and personal history that are his own. And I'm sorry that I've missed out on years believing that we share our memories and our interpretations. I'm trying to let Soren have his own story.

Looking autistic

We did a (successful!) photo shoot with Soren and our new-to-us dog, Moses, at a beautiful Seattle park this week. Our wonderful in-home ABA behavioral technician, Breanna (@breannasandefurphotography), is also an amazing photographer who totally loves and gets Soren, so she got some amazing shots, including many with Soren happily looking at the camera, which is rare for us.

There are so many shots of Soren where he looks like typical 10-year-old--confident, goofy, sensitive, a little sassy.

And then there are those in which he looks just a tad...different. You know when you see these photos that something is just a tiny bit off from what you'd expect. Maybe it's the flapping, the skipping, the sucking on his ID necklace. Maybe it's not looking at the camera. Simply put, he looks autistic.

Seven years ago--heck, maybe even just last year--I would have shown you only the first set of photos. I've been reflecting on why that was. I would have wanted to show you a typical shot and think, "See, my kid can be beautiful and look normal and you wouldn't even know...." I would have wanted the typical experience of a photo shoot, something to cross off on my parenting checklist. I would have wanted what you have regularly without giving it a second thought--the effortless photos, ready to overshare on social media. If I squinted my eyes just a bit, this would look like an everyday, typical experience, and that was important for me to portray. For my sake.

But the second batch is Soren, too. Maybe more so. They are the ones that tug on my heart more, because these are the unique boy that I know and love. And lately, showing you only the first set of photos seems like faking, or even lying. You should know and see all of this boy, not just the parts of him that look typical and that don't make you or me feel uncomfortable.

I don't believe Soren is embarrassed by any traits or behaviors of his that stick out. If you could have seen him prancing around and grinning in that park, so excited to just run around in a huge space, you'd agree that he was wholly himself. He can't help but show that fullness to the world.

So today I'm going to show you Soren's whole person, without any hesitation. Look, everyone. This is my boy. All of him. Isn't he amazing?!

Hard things

“That was the thing about the world: it wasn't that things were harder than you thought they were going to be, it was that they were hard in ways that you didn't expect.” 

― Lev Grossman, The Magician King

Parenting Things are hard right now. I can't go into specifics, but the theme of hard parenting in general may be familiar in your own life, too. Parenting shifts. There's more pushback, more questioning, on both sides of the dyad. We need each other less, or in different, difficult ways. In my more childish moments, I hear myself saying "This isn't fun."

No one ever promised that parenting was always easy or fun or delightful or predictable. But things are harder in ways I wasn't expecting. I'm was already girding myself for my child's puberty, my own aging, his transition to adulthood--but the parent-child relationship when my little guy is 9?? I wasn't expecting this challenge.

He's not like he used to be. He's different from his 8-year-old self, his 2-year-old self. I had gotten used to that little guy. I was used to predictable parenting.

Here is the hard stuff, for me: exhaustion; loneliness; isolation; embarrassment. I say to myself: No one would understand this struggle, these specifics. I can't tell anyone about this. I shouldn't be honest about how I'm feeling to my friends, my family, my spouse. I'm the only one I know who deals with this. It's hard. It's hard. It's hard.

Where's my parenting mojo, my tenderness? This certainly can't be my baby. I hardly feel any of those loving, protective, mama bear feelings right now.

The real questions below the surface are the ones that break my heart: And how can I be mad at THIS child, who has so many challenges?? Really? You're MAD at him? You're mad at HIM? 

Yes. I think I am. I'm often mad at my child. This may be a completely standard situation for a mom and her typical 9-year-old. This may be a typical 9-year-old's change in behavior. This may show that parts of Soren's development are right on schedule. But when a child like Soren is your only child, this anger shakes you. 

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.

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.

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. 

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.