just love them

Here I am again, half a year later, having come so far, with so far yet to go.

Dieting, running, therapy, a solid effort at 7 hours of sleep per night. A lot feels better, but nothing is solved. I am a cup with nowhere to pour, a person who doesn’t feel safe leaning the entire weight of their emotion on another. So I pour a little here, with the person who’s a good listener. And a little there, with someone who’s walked this path before. But sometimes my brain just reaches a fever pitch, the emotional overload of all the conflict, all the sadness, anger, exhaustion, and hopelessness, and there’s nowhere to pour all of that. So I come back to the page and pour it here.

I’m covered in bruises and tiny scabs, the calling card of an autistic child who needs to dig into something – into someone – when he has nowhere to pour. His fingers flex as he looks for skin to grab, twist, pinch, control. Twitching hands snake through my hair, feet and elbows fly, and his tiny voice thunders with anguish. He screams demands at times, criss-crossing needs that contradict each other until I remember, for the thousandth time, that his meltdown is an echo chamber and anything I say – whether to explain, or comfort, or acquiesce – is just one more voice screaming in his tender ears. We’re supposed to disengage – to back away, to be dispassionate, to offer no new input into the swirl of his agitation. But sometimes I can’t help myself, and I put my arms around him anyway. A mother was never meant to be stone.

Every time I think I’ve come to grips with how profoundly disabled my son is, some new detail breaks my heart. His discomfort, anxiety, or pain in a situation that should have been joyful, his panic and fear in a moment that would have been merely unpleasant for someone else. The “hangover” of overstimulation and breaks in routine, that can leave us all in tears after a wonderful day. Even his contented moments, full of wordless trilling and fits of inexplicable laughter.

It’s as if he knows we are so close to the secret of his universe, and all I can think about is how afraid I am that we won’t find the way in.

I’m reading a memoir by an autism mom. There’s this moment when her son is 8, and she figures out that drawing pictures allows them to communicate on a level they never had before. She’s able to explain things that are going to happen – and he’s able to explain his perspective of things that have happened in the past, things that were upsetting to him, that she couldn’t quite grasp without that input. It was like she had found a key that unlocked his stories, his secrets, his fear and his love and his needs. Like she reached the whole person inside, when she had been seeking him mostly on faith.

Is there a key to my son? Will we someday communicate to the point that he can tell me why he loved trains and garage doors and car washes? Will we talk about some epic meltdown he had, and will he explain what I couldn’t see or contextualize in the moment? Will all of that just be a fever dream, the dark days we’ve put behind us with an unspoken agreement not to rehash the past?

Or is the universe of now all we will ever know?

It’s a season in our lives full of endless therapies and evaluations. I never quite get used to the ratings, the gingerly delivered disclaimers that “this is what we were able to observe today, and doesn’t necessarily encompass all that your son is capable of.”

We’ve rated his communication at a 12-18 month level. For self help skills, he’s operating at 2 years 4 months. Social aptitude, 1 year 10 months. On and on, ages in months, ages in abilities, and I can’t hear the message because I’m too busy doing math. How far behind are we? What does the deficit look like? If we’re talking about Owen, how does his progress compare to where Tim was at this age?

Everyone is direct but reserved, compassionate but patronizing. Cut the disclaimers, I want to tell them. I know the song and dance, just give me the numbers. I know it’s a kindness, but I don’t have time for it. I’m busy figuring out just how bad it is, and how I’m supposed to feel.

And so much of it is subjective. It’s not just how one of them performed on a given day, among strangers. It’s also the zillions of questionnaires, the perspective of the parent who filled them out this time. We see different things, remember different things, find meaning in different things. Too many parent interviews have devolved into tangents as we compared notes, insisting that certain behaviors are more or less common than the other parent believes, or more or less significant. The evaluators say that’s normal, and even valuable. That’s why they want us both there when we can be.

But it makes you question your lived experience.

And then there are these bright spots. In every evaluation we’ve been through, Tim’s enthusiasm or Owen’s outrageous showboating has broken through the polished veneer of cordial professionalism. There is always a giggle, a hidden smile, a thousand percent sincere but quickly reined back in. Even the most experienced clinicians can’t help but be charmed by our sons, and there’s something about that that makes me feel like we’re all going to be okay. That people who have no allegiance to me or mine, no loyalty-driven desire to care, will see the light inside of my children, and love them for themselves.

The decades stretch out ahead of us, and I don’t know what life looks like even a year from now. I have these dreams of things just getting better and better – that the leaps they are making in communication and self-care and cognition will compound until we’ve traveled a million miles from today. Like we’ll all look back on this life stage – so often exhausting, grueling, and short on cope – and smile, squeeze each other’s hands, and know that we slayed the dragon together. And then we can move on to the next gauntlet. (Puberty, anyone?)

I have to believe that someday, when I ask my kids how their day was, they will respond. And someday, they’ll pepper me with questions because they have become curious about the world around them. And someday, they’ll be able to tell me their likes and dislikes, and maybe even the why behind it.

I don’t go in for blind faith very often, but today, it’s helping me hold it all together.

Having children is a rocket ride that will cost you everything, and still give you more in return.

It probably goes without saying that when I wrote my last post, I was discouraged and worn thin. There are times when this parenting journey leaves me so depleted and isolated, filled with exhaustion and worry and more than a little self pity. Most of the time, when I feel that way, I’ll write something and file it away. Nobody wants to read that, I tell myself. You’ll make people feel awkward and they won’t know what to say. 

Maybe I did make people feel awkward. Maybe they didn’t know what to say. 

Maybe they loved me anyway, and maybe it was worth it. It definitely was for me. 

Writing is my pressure relief valve, and it’s how I make sense of my world when emotions get jumbled up and things are overwhelming. I have no doubt it will save me many times in the years to come, and I’m grateful to those of you who read it, even on the days when it’s disjointed or depressing or downright bewildering.

*  *  *  *  *

With that said, I had to share a few wonderful things that happened last week. I knew they were coming – they had to be coming – and the universe came through and kicked down the can of joy.

My children did a jigsaw puzzle together. If you’ve spent any time around Owen Willis, you know he is the Destroyer of Puzzles, Stacks, and All Composed Things. It’s a perfectly two-year-old role to play, and one he performs with gusto and glee, every chance he gets. Since Owen gave up naps, Tim has barely gotten to do any puzzles, because he never has ten minutes to tackle one while baby brother is distracted. But when Tim asked for a puzzle the other night, I decided to give it a shot. As he happily sorted his pieces and I wrestled with his thrashing brother, something amazing happened. Owen stopped struggling with me and started watching Tim. I picked up a piece and set it down next to its intended spot. “Owen, do you want to try?” He placed it perfectly. He’s never had any interest in jigsaw puzzles, and he did it perfectly. Before I knew it, all four of us were doing the puzzle – Reed and I pulling the intuitive pieces for Owen and chaperoning, while Owen and Tim excitedly built it. It was priceless. 

We took the boys to their first movie in the theater – and it was a huge success. We were looking for fun new activities for Tim’s birthday last weekend, and we decided to roll the dice on a matinee showing of Coco (which was completely fantastic, by the way!). Tim hesitated to walk into the theater; the previews had already started, and they were loud. I coaxed him a few steps into the room, and suddenly, a dog barked on the screen. I thought it was over right then and there. (Tim is sensitive to the sound of dogs barking, and often freezes and covers his ears when he sees one, in case it barks.) I hugged him and guided him to the side of the aisle as he covered his ears. And then somehow, for some reason, he let me coax him to a seat. He covered his ears for about 75% of the movie – but insisted he didn’t want to leave. And the second the credits began playing, and the lights came up, he turned to us both and asked, “Watch it again?” 

After three months of being in love with the Happy Birthday song and blowing out candles for “pretend birthdays,” Tim had not one, but two birthday cakes and sets of candles on his birthday. We did just a big, festive slice from the bakery at home (waiting on the big construction-themed cake for his party next weekend), and then his Uma baked a cake with him, letting him pick flavors and frosting and candles. Every photo from those moments, every video, is just pure joy coming off him in waves and wiggles. Seeing him so happy sends all of us to Cloud 9. It was a beautiful day.

*  *  *  *  *

Like I said the other day, the highs are so high. Small joys blossom into elation, gratitude, and hope all the time. It’s a rollercoaster ride filled with ups and downs and sudden left turns. My mother’s heart is on the upswing again these past several days, and not a moment too soon, as we prepare to start the IEP process for the first time. 

Thank you for being a part of our journey, especially on the days that I don’t come to the keyboard with good news. I appreciate it more than you know.

I promised honest (and ugly and awkward and open-ended), and here it is.

Just for today, I need a respite from mom life jokes and healthy children. I need space to scream at the top of my lungs how much pain autism has brought into my home, without someone telling me to hang in there because it gets better.

It gets better one agonizing millimeter at a time, and we have hundreds of miles to go.

On days like today, I worry we’ll find the bottom of my emotional reserve years before we find basic, livable homeostasis.

No one but my husband is living this experience with me, and no matter how much time other people spend around my kids, or what challenges they have grappled with in their own families, they just. don’t. know.

I have no neurotypical child, no one so low maintenance and predictable as a healthy toddler or preschooler. I have behavioral therapy and speech therapy and regional centers and IEP planning for two. Therapy homework for two. Copays for two.

Two children who feed off each other’s erratic energy and stimming. Two children who will attack us or each other at the slightest provocation, often for reasons we can only guess at. Two children who rarely answer when we speak to them, who can’t answer a question as simple as, “How was your day?”

Two children who have no fear and are mostly indifferent to pain.

I don’t know how to explain that to people. You would have to live it. On a bad day it’s like a echo chamber of mania, broken phrases on repeat, skipping records of compulsive, insistent behaviors. Nothing you do is enough, nothing breaks through, and part of you wonders, are they really in there? Will I ever reach them?

And you know they’re in there, and you reach them for moments at a time, and you remember it’s all worth it. And then you go back to being exhausted and in pain.

I drove almost a thousand miles last weekend and cried my eyes out at a funeral, and it was easier than being at home all weekend with my kids.

I feel like a monster for saying that, but it’s true. I hated how I felt, but I had the space to be in that moment. I wasn’t being bitten or pinched or scratched or kicked or head butted or screamed at. No one hit me with a heavy toy or melted down because I opened a door or turned on a light switch myself. No one stared at me blankly – or didn’t look at all – when I tried to engage them in conversation.

And for all the pain of this present I’m living in, the future looms ahead. Tim is well on his way to bigger and stronger than me, and I’m terrified that we’ll reach that point before he develops better communication, and better self control. My friends are starting college funds for their kids; I am anxiously awaiting California’s launch of the CalABLE program to set aside funds for their futures, however uncertain. I wonder if they will ever live alone. I wonder what will happen to them when Reed and I are gone.

So I live day by day, moment by moment, wondering how we’re going to make it through and wondering why I’m not better at this. I’m not strong enough, not brave enough, not patient enough. I’d love to tell you I’m this saint that just takes all the abuse and disappointment and sheds a few tears after bedtime, but it’s not true. I yell, all too often. I get impatient, I wonder why it has to be hard, I wonder why me, why us, why them. I wonder if someday researchers will prove they are autistic because of something I did or didn’t do, and I wonder how I’ll ever get past that.

I don’t have any answers. I guarantee you tomorrow one of them will do something wonderful, something amazing, and I’ll feel the glow that carries me a few more hours, convinces me it’s not so hard.

Today, Owen handed Tim a truck to play with, and it made me feel so amazing and optimistic that I almost didn’t write this post, even though it had been brewing in the back of my mind all day. The highs are so high. And I don’t take them for granted.

But the highs are not the whole story, and they are not my whole truth.

A car crashed into us on the freeway this morning, and I cried. 

We weren’t hurt – not that I could feel, anyway – and there wasn’t much to show for it. A torn bumper, a popped fender. A car seat that must be retired immediately, with the straps cut and photographed for insurance. Five damaged cars, three police vehicles, a fire truck, an ambulance. Traffic crawling by, necks craned as bored commuters look for the danger and the fallout. 

It’s a nothing story – one that I feel weird even telling – but it caught me off guard. In the seconds it took me to park my car, clumsily dial 911, and rush to Tim’s side, my brain cycled through its personalized autism worry checklist: 

– What if he’s hurt, and he can’t tell me?

– What if he’s in danger, and he can’t cooperate with people who are trying to help him?

– What if he’s afraid, and I can’t comfort him?

– What if something happens to me, and I can’t protect him?

I cried because I know these fears, and how valid they are. Because I have asked myself what would happen if I was knocked unconscious and Tim was trapped in a burning car. Because I can imagine my sweet, beautiful, perfect child frozen in fear and unresponsive to a rescue attempt.

So I stumbled over my words, babbling something to the dispatcher about an accident as I caressed his face and neck, searched his eyes for hints of pain, kissed his forehead and tried to banish his fear and mine. He just held my hand and kept kissing it. “Hug, Mommy,” he kept murmuring, as I twisted my way further into the backseat to hold him. I heard the quiver in my voice before I even noticed the tears had come, adrenaline flooding through my body, fingertips and toes thrumming with life. 

While everyone else congregated by one of the other cars, comparing notes, I stood vigil at his side, unwilling to move him or to leave him. I felt my throat catch every time I explained my position. It’s weird how even now, saying, “My son has autism,” is such a powerful, emotional statement.

In four words, it commands patience and flexibility and compassion. At the same time, it makes an unspoken promise that I will reshape the very gravity around him to create that environment if the people in his orbit don’t comply.

Cops, drivers, and paramedics peered into the car over my shoulder, checking on him, reassuring him and me. One CHP officer went out of his way to befriend him, and told me he’d spent five years as a classroom aide for children with autism. “It was the best job I ever had,” he told me. He’d only left it because he needed a better income to support his family. Someone else gave Tim a Junior Officer sticker that looked like a sheriff’s badge, which he proudly stuck upside down on his thigh. I never even spoke to the woman whose car hit mine.

So I cried because because today was beautiful. Because the universe was kind, an angel sat on my shoulder, and love followed us today. And that might be the most melodramatic reaction ever to a fender bender with a mild case of whiplash, but I’m okay with it. It’s a moment of gratitude – a reminder that nothing is guaranteed, and every moment is sacred.

It’s 11:45 AM, and he’s been screaming for 90 minutes. It’s horror. That’s the only way I can describe it. Hands down, the hardest adjustment I have faced as a mother is the visceral panic and pain I feel when my child is in distress.

It reduces me down to instinct, and almost to action, even though I know I can’t. We have rules for a reason, we have a process.

Someone out there has a doctorate in behavioral therapy – plenty of someones – and this is the thing that we do with a kid on the spectrum.

But none of those someones are sitting in my living room, writhing in their skin while my toddler shrieks and trembles and lashes out. They write the manual, but they don’t have to be there in the trenches, impervious to the heartrending cry of their own young.

They don’t have to be stone.

But I have to be stone, and I have to be strong, even though I’m new to all this, even though it goes against every instinct I have and I’m not sure I agree with it and the only thing I want in the world is to hold him so we can fight back the rage and the confusion and the terror together.

Even though I’m pretty sure that wouldn’t work, either.

So I record the sound in the room, just a few seconds, as long as I can bear. And I send it to the therapist, asking Is this normal???

I don’t know if I want her to say yes, this is what I expected, stay strong or no, this is something else, intervene.

She doesn’t say either. She asks if he might have an ear infection.

And now I’m sitting here wondering if my child is screaming in physical pain while I bounce the baby on my lap and cheerily, chillingly ignore his cries.

Just stay the course, she tells me. And the second he calms down, praise him and reinforce the positive behavior.

Yeah, I finally text back. I can do that.

An hour later, he collapses in my arms, shuddering and and gasping. I cry into his hair and wonder what I’ve done, if it was right, if there’s another way, if I can do it again if I have to.

I don’t have the answers.

My brain is a twitching echo chamber of why him and why me and oh god i hate this.

I talk to my mom about it sometimes, and my mother-in-law. They both tell me the same thing, again and again and again.

All you can do is love ‘em.

It’s the simplest, most natural thing in the world, but it’s still an act of will. It’s not just feeling love; it’s leading with it, even in the face of frustration, exhaustion, worry, or fear. And it’s knowing when love is all you have to offer – when there are no guarantees, no magic wands, no talisman that will protect them from ugliness and disappointment in the world. 

It’s all you can do, and it’s everything. And with any luck, it will be enough.

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.

Being seen and known, right where you are, is one of the most powerful things I know.

It’s a luxury most of us lack in one setting or another; we have faces and voices that we trot out as needed, to let the outside world know that we are competent, sociable, in control. We are – and always have to be – supportive friends, brave parents, and conscientious employees.

But we have heavy stories that we tell in snippets, only to the people who love us best. We dangle from the precipice of our innermost thoughts, all too often scrambling up and away for fear of betraying our sorrow, our pettiness, our weakness.

Telling the truth about ourselves is a radical act of humility and faith, and it can come at a cost.

But I’m willing to pay it.

So here’s the truth: I have two young children with autism, and sometimes it’s soul-crushing. Most of the time, I’m pretty sure I’m doing it all wrong. Sometimes my husband and I stay up till the wee hours hashing it out, comparing notes, making plans for the future and promising each other, no matter what life looks like in a couple of decades, we will love and support them and each other, and we will be okay. We stay up late confronting each other, and forgiving and comforting each other, for the mistakes that we’ve made during the day.

This will be a place I come to make sense of it, to let it breathe, to let ME breathe. It’ll be honest, and that means it will often be ugly, awkward, and open-ended. I’ll challenge myself to just put it out there without trying to make it poetic, or gift wrap each entry with a moral of the story at the end.

So if you’re here, if you’re interested, thank you for being part of my truth. Thank you for listening and meeting me where I am on a given day. Know that you, your experiences, and your feelings are welcome here.

And Mom, I’m sorry in advance for the cussing.