In this wonderfully original story by veteran writer Chrissy Wissler, she takes us with fantastic voice into the head and the world of a parent. Not any ordinary parent, either.
This is Chrissy’s first story in these pages, and if you want to know how she knows so much about parenting, not only does she have two wonderful children, but she has written a great nonfiction book called Writing While Raising Young Kids.
She is also the author of the Cowboy Cat mystery series and a lot of other great stories and books. You can find out a lot more about her books at www.chrissywissler.com
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I would change it all if I could. To go back in time and just change…everything. Every choice. Every action—or reaction, if I’m being honest with myself. And I’m trying to, but it’s hard. It’s real, real hard.
And forgiveness? For myself?
Even harder. Impossible, it feels like.
So there is no going back. There is no changing the past and that’s a good thing, right? Because then I wouldn’t be the me that I am now.
But damn, do I wish my future self would have popped in for a few wise words, and while I’m no longer wishing for the playbook of what’s to come or certainties of when life would ever—if ever—become “normal” again, I just…just wish I could have had one little piece of advice. One that, maybe I wouldn’t have spiraled down the way I did, as hard and fast, or stayed down as long as I had. Maybe I wouldn’t have lost so many precious moments to the shame and fear and worry. Moments that I can never, ever get back….
All I had to do was enjoy him.
Enjoy the child that came to me, exactly as he was. Enjoy his smile, his exuberant laughter, and his equally exuberant ways of saying hell no, though without the words. To enjoy and hold those moments close. So very, very close.
If I’d done that…
But then, I guess everything really would have changed. I would have changed and that’s what it really comes down to.
Me.
Not my son, but…but me. Me, figuring it out before I lost too much of him in the process, in the system, in the hopes for progress and growth and everything all those people in their pristine white lab coats tell you, but isn’t the one thing that truly, actually matters.
Joy.
It was something so very simple and something I easily and quickly forgot as the fear carefully seeped inside me and refused to let go. At the time, I didn’t even notice it happening but it was. It was there, I just…just couldn’t see it. And now, even with how far I’ve come, I do see it and I still feel it….
But that first time, oh, I remember it well. How I could I not? Most parents are thrilled to throw their little toddlers birthday parties. The kids don’t care, of course, but us parents? We remember. It’s like we’ve anxiously been waiting for these milestones. First steps. First words. First birthday cake smeared all over their chubby-cheeked faces and us parents, clicking away at our cameras so much that we actually forget to enjoy the moment. And those second milestones? Oh those matter, too, and that goes double for birthday parties except now there’s an added twist.
I hadn’t expected, but it was there.
The comparison. The…leveling up of one child to the next and then that constant wondering…are we on the right track? Are we falling behind? Read all the books you want, you don’t actually know until it either creeps in behind you, this little feeling working its way deeper into you, then starts tapping you on the shoulder. Or, it slams right into you and there is no mistake.
But kids? They don’t know and they don’t care. Not at two.
They care about that giant slice of cake that gets dumped in front of them, one with big glops of frosting decorated, of course, as birthday balloons in every color imaginable. Then there’s more chips and dip than a small tummy allows for—always a big hit, especially for Sky. My little guy always loved the green onion drip, you know the kind, the one that comes from a packet and gets stirred into a tub of sour cream. And for his two-year birthday? It was no different.
Except this time Sky was sitting on top of the table, his little bottom tucked right against the bowl of Ruffles chips and the salsa.
It was adorable, it was beautiful.
And his smile? It just, just beamed on his still-baby face, his long curling blond hair tugging past his ears because I’d somehow known he wasn’t ready for a cut yet, so I hadn’t done it. But that smile, it was all for me. He just looked right at me and grinned, even as he shoved another handful of chips into his mouth.
The whole time, he said nothing at all, but then he didn’t need to.
I felt it. I felt his love, I felt him say “Mommy” with my heart and soul even though he didn’t say it aloud.
Then, he climbed down from that table and raced towards me as well as any two-year-old could, which literally translates to “still toddling.” I opened my arms, as was our game, and he leapt into them. He gave me his little head-butts on my chest, again and again. It was his special way showing love, of saying…
“I love you.”
And yet…in that very moment of joy and love it was also when I first felt it. First felt that niggling worry burrowing into me….
There I was surrounded by our friends and their young kids, some only six months to a year older than Sky, some younger. And the truth…it was there…shining in that warmth of the always-sunny, cloudless sky. Kids climbing up the giant plastic slide and sliding back down again and while Sky watched and laughed for a time, he then went back to playing with a toy fire truck. Lying down on the ground beside it, pushing it back and forth, watching the wheels, the movement with this, this intensity, this focus in his eyes. It was exactly who he was, who he’d always been, and yet…
There it was.
A gap between Sky and those other kids. A difference.
But the glaring one most of all, the one everyone noticed first, was his not talking.
Strange how I could smile and see my son, my little boy, enjoy the light that he was and his being, and yet in the same moment, the same breath, really, feel that fear. And that’s what it was. Fear. Fear wiggling inside me, burrowing just a bit deeper. Because while his light and smile were one thing, I also couldn’t help but see the difference between Sky and those other kids. How I heard a baby just starting to walk actually say the word “Momma” and how my heart broke…just a little bit.
The truth, the difference, it was all right there for me to see, in so many colors as well as black and white. I knew in my heart there was nothing wrong with Sky and yet, at that the same time, knowing it wasn’t actually right—
Or “right” as we see and define “right.”
But back then, I didn’t know all that. Not yet.
So that’s why I was feeling raw and aching and hurt on the inside when my friend, someone so close to me I was actually a bridesmaid in her wedding, came over. She was holding her glass of rosé—or maybe it was just water. She was still breastfeeding and was one of those moms, the ones who followed every rule in the book, every guideline and recommendation from the American Academy of Pediatrics to the letter.
“So…”
She wasn’t really looking at me but at Sky. Watching as he pushed his fire truck back and forth and I knew in that moment, that little feeling in my gut, that voice in my heart, that she wasn’t seeing what I was seeing, but something else entirely.
“Have you taken him for his two-year checkup?” she asked.
I held my breath.
Either that, or it was sucked right out of me.
Regardless, I didn’t say anything for a moment because I didn’t know what to say or how to respond. See, I knew exactly what she was saying. Or, in this case, what she didn’t say. And those two points? Oh, they were very different things. Very different. The first question was about curiosity, interest. The second was all about judgment and opinion. And what could I say surrounded by all these children? Screaming and laughing and chasing each other—Sky even glanced up a time or two to watch, before focusing back on his truck.
Have you actually tried to have a serious, in-depth conversation with all that going on around you? I know—dads have this one superpower us moms, or most moms, don’t have and I’m absolutely envious. Because there I was, floundering. How was I supposed to open up, to talk about this sudden…unknowing that I have for Sky? This uncertainty? This fear?
And seriously, how the hell do I say any of that, to share my vulnerability when all I’m getting from her—one of my supposed closest friends—was her opinions, her judgments?
Just like Sky, she didn’t have to say one damn word about what she thought ’cause I’m telling you, I felt it.
Loud and pretty damn clear.
Did it matter that she barely spent any time with Sky? The business of life and kids meant we only saw this family a few times a year now, but apparently that didn’t matter. Apparently she’d seen enough to be an expert on Sky, to make her own conclusions, and that was that.
Trust me. I knew it in the same way I knew I was alive and breathing.
Yet my friend looked at me, expectantly. Waiting.
I shrugged. Tried to make light of what I was feeling—and failing miserably at.
“We talked with the pediatrician at Sky’s eighteen-month checkup. She wasn’t concerned at the time.”
And why should she be? Sky had said ten or twenty or however many words they wanted checked off their little box. It wasn’t my fault she was too damn busy to actually sit down and talk with us and ask how many times he’d said those words.
Hindsight. A real butt-kicker of a gift, I’m telling you.
But back then I didn’t know that and I tried to keep smiling…
And keep breathing.
I felt my frustration rising toward my friend and downed my own glass of rosé (trust me, breastfeeding or not, this was definitely not water).
I didn’t say anything about her “unspoken” comments because after all, we’re not allowed to make a fuss. We’re not allowed to be disagreeing or “get into it”…even if someone else was making a judgment about my own damn kid.
You see, to my husband and I, Sky felt normal.
A house of introverts, a house where we actually didn’t talk much (and then there were the grandparents, three out of the four, also introverts). It always felt perfectly normal to have a child like Sky…a child who could give directions via hand pointing and sounds and hums from his car seat on how to get to See’s Candies or Grandma’s house thirty miles away. A child who would sit on his grandpa’s lap and watch videos of steam trains, both with this complete focus and contentment. His grandpa who worked on trains, fixed trains as a hobby no less.
And yet…
And yet that was the first moment when the fear worked its way in and I had no idea the damage it would do. To me. My family…
To Sky.
But what parent on the planet doesn’t want to help their child? Help them grow? Succeed? Especially if they actually need help…
That right there was the rub. I just didn’t know it at the time.
So my husband and I took Sky to his two-year appointment and this time the pediatrician, after putting a dollop of antibacterial gel on her hands, froze like a goddamn deer in headlights when we told her Sky didn’t say those words all the time. It was like the floodgates opened and I couldn’t breathe. It was too much, too real. Everything changed and the fear came pouring in—hers, ours, the nurse walking past the hall, everyone…
Everyone, but Sky.
Sky, who was still the same kid he was the day before and the day before that. Sky, with his smile and his exuberant joy and light as well as those moments when he’d had enough and no was no—and believe me, everyone knew when we’d hit that point.
There was a form to fill out, and by “form” I’m being crazy generous here. It was a checklist.
For autism.
Now, I knew children with autism, had watched them grow up, and I also knew that knowing one child with autism meant you knew one child with autism. But this checklist? This straight-up to jump to what could be wrong with Sky?
It just didn’t feel right.
Not for us, not for him.
Sky was social. Sky was sharing and engaging—at least with those he knew and trusted, and it was always at his own time and pace, but it was there and that’s what mattered….
Right?
That’s what I’d thought, at first. I came to realize the truth, or many truths to be exact, but not until much, much later. Still, I can’t even begin to tell you the shaking I had going on inside my body. I wanted to help my son; I wanted to provide whatever it was he needed to succeed and yet…
I filled out the form. My husband read it over and asked for change. I did it.
Then, we got our marching orders from the pediatrician. Speech therapy. Auditory assessment. Neurologist—
“Neurologist?” My voice broke.
There was no mistaking my fear now, no hiding from it, so I didn’t even try. All I wanted was to keep breathing, to somehow keep my focus on my son.
“To check for autism.” The pediatrician snapped her pen open, watched Sky for a moment, then made some mark in his chart. “Just in case, though…it does look like he’s borderline.”
Borderline.
She didn’t know him at all, didn’t even try to engage with him and was already reaching a conclusion. This same doctor in her white lab coat who had barely given me five minutes every single time I brought him in for these “well child” checkups, and believe me, while there’s a shit ton of checkups, there’s not nearly enough to make this kind of claim…of diagnosis.
I could barely breathe, barely think.
All I wanted to do, was cry. To hold my little boy close and never, ever let go.
The doctor, of course, didn’t notice. Didn’t even seem to care, really. She just watched Sky, her thin lips pressed so tight together they nearly disappeared.
Sky was playing on the floor with another kind of truck—a dump truck this time. Not noticing what was going on with the adults in the now-cramped room—or maybe he did. Maybe he knew a hell of a lot more than us adults had ever given him credit for and he did the only thing he could. He ignored us.
The doctor didn’t say a word about his focus on that truck and yet still…I felt it.
“We ask for everything when it comes to insurance.” She clicked her pen closed and tucked it into that big pocket of her pristine white lab coat. “Don’t be alarmed.”
Bullshit.
As if I could feel anything but, especially when she then handed me yet another resource: the number for our local early intervention services.
I took the number. The number for a local, intensive autism clinic.
What else could I do? She was the doctor and I was just…well, I was just a mother. But why? Why did this feel so wrong? Why did I get this sick, horrible feeling in my gut?
I said none of this, didn’t even acknowledge that quiet, tiny little voice whispering to me, “No.”
Away I went like the good little girl I’d been raised to be. I made those phone calls, scheduled those appointments. Didn’t matter that my insides still shook, still squeezed together so hard it was like they were trying to just disappear altogether. Didn’t matter that every time I tried to breath I wound up crying inside.
That, that’s what fear does to you. Bit by little bit.
Sky was different. We knew that, we accepted that. We wanted to help him in whatever way it was he needed. But was there something “wrong” with him?
No.
And yet…it was a shame, a real, real shame that everyone else then tried to convince me otherwise.
Our first stop of many was early intervention, a service provided by the government and perhaps, if I’d been in my right mind, would have given me proper warning. Unfortunately, I wasn’t and had this silly assumption that everyone wanted what was best for my child.
I really should have known better, especially when I met the woman giving the evaluation. She was one of the most unpleasant individuals I’ve ever met in my life. Unhappy. Discontent. A perpetual frown that zeroed in on my son and stayed there. A roomful of toys, puzzle pegs and trucks and fire engines, and she wanted Sky to stop playing. To do exactly what he was told and in the way she wanted it done. Immediately.
That, however, is not my son.
Not then, not ever.
Control is huge for my son. Essential. You just don’t automatically get control because you are an adult. And as a stranger? Someone who didn’t get down on their hands and knees and try to engage with him? Play with him?
Not gonna happen.
And it didn’t.
Sky wouldn’t listen. He kept his head down, the curls of his blond hair tickling his chin, and wouldn’t respond. Not to any request or command she made, not even when she called his name. And when she asked me to? Well, Sky, being the brilliant little being he is, knew I was being tasked with this unpleasantness—and ignored me, too.
The evaluator scratched something unpleasant onto her paper.
My face burned. My heart hammered as I silently pleaded with him to listen, to show this woman what he could do, who he was.
It didn’t happen.
The evaluation continued to get worse to the point where Sky would move from one side of the room to the other, any place that she wasn’t. She asked me to strap him to a chair and by God, I listened. I did it. Because what did I know? I was no one. I was his mother. Not someone who assessed children for a living and had this greater understanding of psychology and how to help kids talk. And these people were trying to help—
Sky cried as the safety latches clicked in. Screamed. Struggled.
She told me to let him out but I was already moving—at least I think I was. I hope, I pray—
That he’d forgive me.
Sky went to the heavy wooden door with that twisted iron handle and tried to open it. Tried to leave.
He couldn’t move it. It was too heavy. I imagine, designed for just that reason.
Also, I didn’t let him leave. Couldn’t, not when the fear was in control, not when they just might be able to help him.
I wish we had left for so many, many reasons. Because that meant I would have had my own strength, my own voice and power to say, “No,” and with a force only a mom could speak. But I also wish we’d left because, because then I wouldn’t have heard all those terrible things they had to say about him.
In his official report.
By experts.
Tests which they believed accurate of his current abilities because “they said so.” Didn’t matter that he didn’t engage, that he didn’t even try.
Early intervention had wanted him in group therapy for an hour, and then for circle time where he would learn “to attend” and follow directions, to get him “school ready.” They didn’t once ask what we, the parents, wanted, that we’d already decided to homeschool.
And yet…
I wanted to help Sky.
We took the paperwork but didn’t sign it.
I left in tears. My husband was furious.
And Sky? There was no running into my arms, no loving head-butts afterwards, but then…I didn’t ask for it, either. I was to…consumed. Trapped. So instead of the play Sky needed, the love he needed, it was fear that moved my body, fear that had control. He did the only thing he could: a straight-up mad dash to his car seat and stayed there.
I suppose we had “answers,” but they didn’t feel right, so we kept searching. Next was the neurologist. Thank God she was kinder than the last evaluator and sat beside Sky at one of those bright-colored kids’ tables. She drew circles with crayons while Sky tore the paper off the crayons. He had this little rainbow of color paper shavings on his lap and any other day, I’d have thought it beautiful. Now, though…
Now the neurologist watched him. Watched each little paper flutter to his lap. Then another, and another.
Never looking at her. Never engaging.
She said nothing, but I felt it. I felt everything she thought, every opinion, every little mark in her checkbox. I saw what she saw with her eyes and not the way I saw it: a terrified little boy who was closing in because he had no words, no other way of communicating “Leave me alone.”
She didn’t, of course. We’d come to her for a reason, after all.
So the neurologist gave Sky yet another evaluation. She recommended speech therapy for six months, then come back to see his progress. The whole time Sky wouldn’t look at this doctor, either, wouldn’t engage with her.
I couldn’t blame him, not after the last time.
“From there,” the neurologist had said, “we have a few more invasive options. Autism and genetic testing. Maybe an MRI brain scan and possible overnight vEEG.”
I had no idea what all those letters meant but, but overnight? Seriously?
“MRI?” My voice was barely a whisper. “How could you even get him to sit still?”
The neurologist didn’t answer, just…just looked at me.
Sedation, then.
All the while she watched Sky and didn’t see the Sky I knew, the Sky I’d lived with and loved for over two years now. She didn’t see him because he wasn’t willing to show her the truth. She hadn’t earned the right, hadn’t earned his trust. So instead, he was just the person she wanted to see.
I left again with no answers but more work. More marching orders. More and more push for therapy and now it was private speech therapy and occupational therapy—
“Why would he need that?” I blurted out. “Because he didn’t draw a circle when you asked?”
The neurologist in her white lab coat just looked at me again. A patronizing look, no doubt about it, as if I was the crazy parent in denial
“The problem,” I said, “is he’s not talking.”
I never got a straight answer. In fact, I never seemed to because no one actually knew. Oh, they sure thought they did. They focused hard and fast on those red flags and to be honest…it was hard not to, even for me. Because when you start looking for it, that’s all you see. Everywhere you turn. Every where you look. There’s no more joy and wonder and delight because now everything has become a concern, a tick, a little flashing warning light. Lining up cars, jumping up and down in excitement, all these things perfectly normal behavior…if you have a child who talks. If not…well, that fear, it was a real thing. Real and breathing and it had this hold of me and I couldn’t shake it.
I wanted to help my son. I needed to help him, but how could I when we still didn’t have answers?
We kept searching, though, and searching and searching. We event toured the special clinic our pediatrician highly recommended.
“It does wonders for children with autism. Very intensive.”
No kidding. Five days a week, four or five or six hours a day. No parents allowed to watch or witness except, as I soon saw, each room had a viewing window. For studying, for assessing—I had that feeling again, that little quiet one in my gut, but I ignored it. I was scared, I needed to understand.
I needed answers.
We walked into that reception area and Sky immediately started crying, immediately started trying for the door, and what did I do? I let the fear do the talking, I let the fear pick him up and go into that appointment.
I don’t remember much…just the disinfectant so strong that after only a few minutes my nose went dead to it. And the viewing windows, of course. A kid or two kids inside, an adult with them. No smiles, no joy.
And yet, I couldn’t help but think, but believe, “Yes! This is what my son needs. This will fix him.”
Our insurance, thank God, didn’t cover it. Not that it would have mattered much in the end.
I asked my husband, “Well? What do you think?”
“Sky’s not going there.”
“Why? What do you mean?”
“Did you see those kids in there? That’s not him. He doesn’t belong here.”
Truthfully, I didn’t see any of it. The fear had control and it’d liked what it’d seen. Structure. Order. A way to “fix” what was “broken.”
The spiral only continued. Getting Sky’s hearing checked by an audiologist, paying for private speech therapy at our home so Sky could feel more comfortable and safe. Months went by. Thousands of dollars and still…no answers.
We went and checked off each of those boxes. Did (almost) everything they wanted us to do. Talked to him nonstop even though so much talking felt wrong to us. Read to him even when Sky would come and close any book because he didn’t want me to read. None of that mattered.
I listened. I did as I was told, the good girl I was raised to be.
And do you know what happened?
No words.
In fact, the more we progressed on this road, the more we tried to help Sky, the less sounds he made at all.
He turned off his voice. He stopped smiling. He stopped living in joy.
Bit by bit, I lost my little boy.
Me. My doing. My choices.
And the whole while, I couldn’t see it.
How could I hear him, hear those thousands of ways he spoke to me without actually saying a single word, when my entire head was filled with everyone else’s voices? Everyone else’s doubts. Opinions. Judgments. Everything that was wrong with him and nothing that was right.
And yet…it all felt wrong.
Because somehow, in some tiny, tiny small way, the little voice inside me still lived. That’s all it was in the end, this little feeling. This little voice that kept whispering, not with words but with feeling. Emotion. It was the same way I always knew what Sky wanted. The same way I’d look up in the playground after he crashed down particularly hard at the bottom of an orange spiral slide. I looked up because I just knew he needed me and sure enough there he was, searching the playground…for me. And even that one time when I heard a voice clear as day in my head say:
“Mommy? Where are you?”
Never any words, but a feeling. A knowing. A voice.
My voice.
After all those months of living in despair and darkness, my voice was all but gone and yet still it didn’t give up. It kept pushing, kept probing, and would not stop whispering…
“They’re…wrong.”
For so long, I couldn’t hear it. I was too afraid to hear it….
Until the moment I wasn’t.
I wish I could say it was this great, glorious moment. A hero-of-a-mom moment where I puffed up my chest and roared to the doctor that I knew exactly what I was talking about because I was a mother!
Well, no…not right then. Eventually, yes, but not at first.
Instead, it came as a slow, dawning realization. An awareness, a blinking at the light you hadn’t seen for so long and it’s blinding and a bit terrifying and yet…there is light.
It was that moment when I held my son and looked into his eyes, eyes that were hidden by bangs that desperately needed trimming, and saw with my whole being that they weren’t shining anymore. There was no more laughter, no more joy, and it finally, finally struck a chord in me and I heard my own small, tiny little voice…
“No more.”
There has to be a better way.
I wanted the running hugs again. I wanted the loving head-butts. I wanted those high-pitched squeals of laughter during our cuddle and tickle games.
I wanted my son back.
Little steps at first, that’s how it starts. After all, it’s hard to hear the quiet voices after so long in the darkness and despair.
I found a book about late-talking children and then another, my world opened up that there were other answers out there and not just autism. I found a group online, other parents who had young children like mine and even more who’d been through that dark tunnel and had stuck around just to help us new parents on the journey. I read and I read, I found an expert on my own.
And when I told my pediatrician this?
She ignored me. Just clicked open her pen, then off again, not writing a single word down in his chart. She completely discounted what I had to say and wanted me to go back to the neurologist. It didn’t matter that I told her I was not about to allow Sky to have an MRI or whatever that EEG thing was, that I didn’t believe he had autism but something else entirely. It didn’t matter, because she wasn’t listening.
She didn’t hear my voice. She sure as hell wasn’t going to hear Sky’s silent one.
I took back my power, one step at a time. I found my courage, I found myself and my strength and I said, “No.”
Then, I walked away.
Did you know that we can do that? That, as parents, we have this right? That we don’t have to be the good girl always standing in line and following directions?
So, I said no more to the speech therapist and turned to the expert I’d found, I’d vetted, and said, “Teach me.”
I listened and I learned and I became my son’s speech partner twenty-four hours a day. That sounds like a lot. It isn’t. In fact, I’ll let you in on a little secret.
…Ready?
It’s living. Just, just living. Living the life that felt right for me, for my husband, for Sky. It’s having the green onion dip whenever we wanted and not just at those super-special milestones because who came up with this dumb idea of milestones? It’s all in the little moments. The pauses between breaths.
All I had to do was listen to that little voice, that feeling, the one right there in my gut, the one I’d had this whole time. The one that had known Sky was different but also not…wrong, but right. For him.
A parent’s intuition.
That moment there is when I found my answers. No, not all of them, I still don’t have that playbook of the future from my future self, but I had the only real answer I needed.
It was Sky.
This whole time, all the answers I’d been searching for—the real ones—they’d been in front of my face. I just hadn’t been able to see it. Who better than Sky to tell me what he needed? Who better to guide me and teach me than the person who needed help?
All I needed to do was listen, to trust, and to follow the smiles.
So, no, I still don’t have that playbook and I still can’t go back in time and hold those smiles close. But I have them now. The smiles, the loving head-butts, the tickle games, and I’m holding them close. So very, very close.
Because even without the words, I can hear him.
I can hear me.