About a month ago, Tim underwent another ASD evaluation by a third party, to see if he qualifies for additional services through our local Regional Center. (Spoiler alert: he still has autism.)

I probably should’ve expected the feelings, but they caught me off guard. The depressed nostalgia filling out the stack of questionnaires, the rueful way I used the proper jargon to identify his behaviors, rather than waste a whole sentence describing each strange thing I saw, or thought I saw. Then there were the things I only saw when someone asked me exactly the right question, as if they had reached into the shadows above my head and gently tugged the pull string I hadn’t seen, until a dusty bulb shuddered to life and began swaying ponderously above me.

The bewildered way I shuffled into each tiny interview room, already knowing in my gut what they would see, what they would say. Having learned just from the questions asked that we were far off the mark from “normally developing” and wondering what that meant for him, and for us.

But it was different this time. He had a meltdown, before we even made it to the office door, and it was all we could do to wrestle him into the building before some well-meaning passerby called to report a kidnapping.

And that was it. It just dragged on, approximately forever, thrashing legs and swinging arms and blind rage and sorrow in his yell. Stilted phrases tumbled out of his mouth, half of them unintelligible, echoing and repeating through his gasping sobs. He said them again and again, “It comes back, it comes back,” and “Go see Opa, go outside,” but I knew even if I could honor those requests, it wouldn’t calm him. We were too far gone.

We gave him space, he always needs space, even though he usually tries to close the distance to make contact. A scratch, a pinch, a haymaker, he just needs to touch somebody, to make something happen, as if it could ground him. I have literally held him as he cried himself to sleep, and felt him alternate between caressing my hand and digging his nails into it. It’s a compulsion that none of us can control.
So we gave him space, and we coached him when we could, while the examiner watched patiently and took notes. Most people don’t get to see this. For whatever reason, Tim usually can hold it together when we’re out in the world. Even his grandparents have rarely seen him go through a meltdown.

But here we were, in front of a professional who had probably seen just about everything, and I felt the shame creep in again. It’s weird to admit, because in the moment, all I care about is Tim. How do we get him back to homeostasis? How do we keep him from getting hurt, from hurting anyone else? How do we comfort him? But in the back of my mind, I feel people watching. And I file it away, the thought that I can’t spare my child this pain, and people see that now. That no matter how calm and strong and intuitive I might be in this moment, the meltdown has happened, and he’s stuck on the rollercoaster ride of emotion and overstimulation, strapped in with no emergency brake and no safety net. I’m supposed to be his safety net.

It ended eventually, and the rest of the evaluation was run of the mill. He missed a lot of answers on the cognitive evaluations, missed a lot of social cues they were waiting for. I wanted to jump up and down with glee whenever he got something “right.” After two and a half years doing therapy for 35 hours a week – after we’d essentially given our toddler a full time job to learn the things that most kids pick up organically, he was killing it. Fuck yeah, he understands that those two birds go together even though they’re different species. Yep, he did just demonstrate joint attention, looking up at you with a grin to see if you were loving what he was loving.

If someone had handed me a football right about then, I’d have spiked it.

Then she went away for a few minutes and scored everything. The cool thing? He shows huge improvements in his social skills compared to where he was at diagnosis, two and a half years ago. But now he’s further behind in cognitive and language than he was then.

And I just don’t understand it. I don’t understand how he can make it his full time job – one he throws himself into with enthusiasm and heart and patience – and net out further behind a couple of years later.

I honestly don’t understand how the world is this unfair – how none of this has come to him even a little bit easily, how he’s fought for every word and phrase and stupid picture matching goal they’ve put in front of him, and he’s losing ground compared to his peers.

How do you overcome that? How do you put him in a learning environment that capitalizes on his curiosity and his interests and his work ethic, and keep him growing at his own pace?

At some point, he’s going to realize he’s different. At some point, someone is going to give him the idea that he’s less than. What do we do then?

I finally received the written report the other day, and it’s all there – 17 pages of clinically detached prose interspersed with tables of scores. Right there, smack on the first page, is a description of Tim’s meltdown when we arrived. The pinching and hitting and kicking. The yelling. The hysteria. It’s a meltdown on the record, and it feels more real there, and more damning. And the cognitive scores are even worse than I realized. My child is literally in the first percentile for nearly every test they gave him.

Think about that for a second. Ninety-nine percent of kids his age can complete more of these tasks than Tim can.

To be fair, I think that as Tim grows and develops more coping skills to help him weather overstimulation, and more language to help him understand and answer questions, we’ll find that a lot of the necessary understanding is in there somewhere, ready to be cultivated. I think he knows a lot more than he could show on that test, in an unfamiliar environment, with a stranger, coming down off of a meltdown. And even if he couldn’t, even if he never can, that’s not what matters.

I mean, it matters. It matters to me. I come from a long line of smart people, and my husband is actually a legit genius. If anything, we assumed our kids would be above average in the brain meats department. I shouldn’t care, but on some level, I do. I always imagined my kids would be great thinkers, and we’d have these amazing conversations about ethics and bugs and the meaning of life, and now we might not get to share those things. It’s too soon to worry about it, but I never let timing get in the way of my worry.

I asked the examiner if these scores meant that his diagnosis would become autism spectrum disorder with cognitive impairment.

“No,” she told me reassuringly, shaking her head. “We don’t diagnose that under age five because we can’t know how much he’ll catch up. I’m diagnosing him with autism spectrum disorder and global developmental delay.”

He’ll be five in January.

Reading the report, she diagnosed him with a language disorder as well – and marked him as being in the first percentile for speech.

Right before he started speech therapy, about a year and a half ago, he was marked as being in the 7th percentile.

I know the things we are doing help. It’s rare that a day goes by without him doing or saying something new and exciting, something that gets us texting with our parents and our friends and his therapists, raving over the latest achievement.
Yesterday, Tim pointed to his brother in the Cozy Coupe and said, “Owen is driving the red car. Owen will be right back.”

For those of you used to hanging out with preschoolers, this is pretty run of the mill.

But my message to our speech therapist began like this:

“OMG are you sitting down?!?!!”

Because those are perfect sentences, with nouns and verbs and adjectives. There’s a freaking gerund in there – something he just started working on a few weeks ago – and none of the words are missing.

There’s only been one other perfect sentence in his life, and I can tell you exactly what he said, and when – because that’s how we live this shit, moment to moment, hour to hour, rising and falling with the beat of his larger than life heart.

It was May 30, by the way. And he said, “I want to go to the beach and play in the sand!”

I just teared up, looking at the screenshot of that text to his speech therapist. I wished that I were still in Southern California so I could throw my arms around my uncle, who’d gently prodded me again and again to come down to the beach with my family, and see if the kids did alright there. They loved it.

Beach is now a verb in our house, by the way. Everyone I’ve shared this with finds it completely appropriate.

“Time to beach,” Tim tells me. I promise him we’ll beach again soon.

He’s worked for every bit of it, every moment of understanding and being understood. I’m terrified that at some point it won’t be enough, and that he’ll feel it in his gut. I won’t be able to fix it.

But it’s late, and I’m emotionally spent. No answers and no tidy ending tonight.