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?!