After I took my three youngest to the apple orchard and farm — $53.00 in Honeycrisp apples later — I called my mom and told her, “It’s just so different now. When my first three were this age, we couldn’t go anywhere. Cannon was such a risk, such an unknown. Autism felt impossible. I was so limited when I had three under three the first time around. I almost feel like God is redeeming that entire season of motherhood with these three.”

I don’t think many other mothers will really understand that, and that’s ok.

But I guess I just wanted to say that I’m grateful.

It’s been three years since our little man was diagnosed with autism, though closer to four since we knew it was coming. When I look back, it feels like time has roared by, almost like it has gone on without me. Three years? It can’t possibly have been that long. Was I really there for all of it? 

I can also recall a good number of evenings when I looked at the clock at 4:00pm, again at 4:18pm, 4:29pm, and wondered if it would ever just be bedtime, so yes, I know I was there. That long days fast years thing is the truth. 

When it comes to autism, time and I are in an awkward relationship. It wants to show up and live at the same cadence every single day; I want it to notice when something is good and slow down, then catch on when something is hard and, obviously, speed the heck up! It prefers sameness though, a lot like autism does, and refuses to bend to my desire for it to play by my circumstantial rules. This is mostly fine; time is given to all of us fairly every single day and there are not many things that are, so I won’t begrudge it.

Four years ago, even with the evidence of autism hovering around us, a staunch and hopeful defiance characterized most of my days. It’s hard for me to say if it was hopeful defiance or fear, actually - even though one should be able to tell those apart. I guess it doesn’t matter much; whatever the feeling was, it was near impossible to live with. I refused to google anything other than speech delay, superstitiously thinking if I typed a-u-t-... or any rendition of it into a search bar, it would make it true. I clung to every possible sign of engagement from my two year old, unsuccessfully believing one imitation of a syllable counter-acted two dozen failed attempts to get him to respond to his name. I constantly measured him against his peers, looking for evidence that his development was ‘normal’, begging my friends to tell me it was ‘normal’, cheering wildly when he demonstrated anything ‘normal’. Still the chasm grew with each month, and hopeful defiance simply could not stand up to fact. 

We were going to live with this thing, this word that carried more weight than I was prepared to lift. But the first step was learning not to be afraid.

A-u-t-i-s-m. 

I typed it. I bought the books about it. I cried about it, but I said it.

The funny thing is, hopeful defiance might have crumbled when it met reality, but God rebuilt it in our lives as real hope, no longer in the outcome, but in the Author of the story. No defiance necessary.

There is an old video on my phone, a dark and early January morning that I was awake with Cannon, reading his books on the ground with him. I am pointing to a mountain on the cardboard page, willing Cannon to take my enthusiasm in and speak, anything, just speak. 

“Mow-nnn-ten.” I say loud and slow, holding each syllable for his ears to process. “Mow-nnn-ten.” 

Silence hangs for a moment, then his tiny fingers point to the mountain and he manages a “Mmm-mmm-a. Mmm-mmm-a.”

“Good job!” I squeal in the background, so delighted with his effort, with the “m” sound coming from my silent boy. 

That same video I am giddily happy in brings tears to my eyes today. Tears that I wouldn’t see what was so clear in moments like that, how profound his struggle with communication truly was; tears that I couldn’t will the words to come from his mouth, that no amount of enthusiasm on my part would bring them out; and tears that he has come so far since then, gratitude that while autism still makes sentences a challenge, he doesn’t have to fight with each syllable in that same way anymore - a luxury not everyone has. It’s moments like this when I am so thankful for both time, and hope.  

Cannon is in Kindergarten today. The many, many weeks of standing at the door of the therapy room so he would not escape feel so distant as we wait at the bus stop together, no need for a tight grip on his hand or prodding to get on the bus. He waits patiently on his own. He sees the door open and runs on like he’s been doing it forever. I could not even imagine this would be possible back there in those therapy rooms; something as normal as sending your child to school on a bus were not possibilities I allowed myself to think about. But time and hope, and no small amount of hard work from all of us, and look where we are, where he is. 

I am amazed by this boy. I wish I could have just a moment in his world, to see and hear and think about things how he does. I wish he could tell me everything, that we could take a walk after school and laugh and ask questions and listen to each other. It’s not possible right now. But he also points to that same book in the video and says as clear as a sunny day, “Let’s go to the tallest mountain!” and you know, a few years ago that wasn’t possible either. 

Jesus answer to his disciples in John 9 about a man’s blindness has for years been our comfort and our rallying cry: “That the works of God might be displayed in him.” But more importantly, it’s been true. There is so much about our good God on display in this boy. I was so afraid of it all just four short years ago, so scared about navigating a life that promised nothing but unpredictability. I was dreading the time and out of hope. Today, holding both the moments we struggle and the moments we celebrate, and constantly seeing this boy surprise us, time and hope are two of my favorite things to depend on.   

(and maybe a helpful way for you to, too).

“Everywhere we go, it’s work.” Alex confessed his thoughts to me as we wrangled wet swimsuits off our kids and searched the oversized bag for the dry undies.

I stared back at him, unsure of what he really meant and how to take it. My silence was enough. Sometimes parenting leaves all kinds of room for misunderstandings and taking offense.

“Babe, don’t be mad at that statement. I’m just processing. I’m telling you what I see and how I feel, and I have to be able to tell you that.”

“I know,” I said in return. “But I thought we had a great time swimming. I thought the kids did awesome, and I thought Cannon had a blast.”

“He did! We did! It was a great time. I’m just admitting to you what I feel, that it never gets easier to do things that are ‘normal’. That we have to always be prepared to work.”

Of course, Alex was right. He had just spent the better part of an hour micro-managing almost every aspect of our trip to the pool. “Cannon, walk buddy!” he would yell from the water, no less than two dozen times. And each time, Cannon would only pick up speed and continue sprinting from the concrete to the shallow entrance, with a smile across his face a mile wide.

Does he not hear us? I don’t know.

Do his receptive language deficiencies inhibit the understanding of the words “do not” and “run”? Maybe.

Is he just bad? No.

Nonetheless, it was work. When Cannon would not walk on the slippery pool edge, Alex would get out with him, grab the buckle strap of his water wings, and force him to slow down all the while repeating the command: “walk, walk, walk.” Over and over and over. Cannon never seemed distressed, he never threw a fit about being held back. That sweet boy was having the time of his life at the pool, and we loved seeing the joy on his face. But when all around you other parents are warning their young children to slow down and walk, and those kids forcefully slow their steps even when everything in them wants to run, you see it – you see the autism. And you feel it. You feel the autism. And you wonder, will we ever get there? To that place when you tell your child to do something, and they just… do it?

*****

I saw an article a few weeks ago that a friend had shared, something about a new thing called ‘virtual autism’ and how too much screen time could be the cause of the rise in autism. Of course they still had to actually study it, but whoever the authors were felt confident enough in their guesses that it was worth sufficiently scaring parents everywhere about the iPad. I also recently heard that there is a new wave of thinking about autism – that it is perhaps the newest form of “evolution” in human history: since a very small percentage of autistic men and women also can be savants in certain categories, and since we need those highly articulate thinkers in an increasingly complex and technological world, natural selection is just one step ahead of medicine and is ‘creating’ them for us. And there is one of the latest P.E.T.A. campaigns, landing blame for autism squarely on the dairy industry and all the mothers who did exactly what they were told when transitioning their twelve-month old from the breast to whole milk.

And of course there are the less stretching potential causes: vaccines, a toxic environment, maternal age, too many medical interventions, genetics.

I don’t know.

Or an unnamed second trimester abnormality that causes essential cells in brain development to “lose their way” to their proper place.

Maybe.

I am not sure who or what to blame for autism. But I also don’t stay in the blame place, because it is crippling. The far more important question for us to ask is this: did God forget about Cannon and the millions of children and adults, some stumbling and some making their way alright in this world, with a brain that sees and takes it all in so very differently?

No.

*****

Our first red flag with Cannon was his speech. He was always quiet, and he has remained quiet. Our little guy never really developed words: once or twice he said “buh-buh” (bye-bye) and a rare “mom” or “dad” or “doo-doo” (thank you), but Cannon’s story is not one of normal verbal development and then regression. He did go through a few months where he stopped saying even the four or five sounds he did have, but the regression was minor compared to the level he had ever initially attained. He started speech therapy at nineteen months old (he hated it), we moved to the Early Intervention Services and added occupational therapy to his repertoire (he tolerated it) and by two years old we knew what we were looking at. He was rarely responding to his name. He wasn’t too interested in other people. He could not follow simple commands.

There are so many moments in those months that stick out in my mind. Like just before his second birthday when I had him on my hip at the refrigerator. I knew what he wanted, he had pulled me over to the door which was his clear indication for milk. So I picked him up and said, “Cannon, say please.” I knew he wouldn’t, or couldn’t, but I persisted. “Cannon, say p-p-p-please.” Silence. “CANNON, say p-p-p-lease!” He reached harder for the door, I forcefully grabbed his tiny hand and rubbed it on his chest to mimic the sign language. “SAY PLEASE!” He whined, I commanded louder. After a dozen requests, I started to cry. Why won’t he just say “PLEASE?” I put him down without the milk, thinking my hardline parenting would help force him to talk, but it only caused him to fall apart.

Is he even able to say ‘please’? I don’t know.

Will he ever talk? Maybe.

Can I just quit, because this is too hard? No.

It was all so painful, to say that A-word out loud and know it belongs to your child. It’s not anymore - but oh, it was back then. I was living on the brink of tears every single day.

*****

Autism falls under the broad category of Pervasive Development Disorders. This is how I very un-scientifically define it:

Pervasive – all over the place

Development – how things should grow

Disorder – something went wrong

Pretty simple: something went wrong with how Cannon should have been growing in several ways. If we think of the brain like a map, directing information, feelings, language and emotions to their correct places, I think of the autistic brain like a map with holes in it. The information may start where it is supposed to, but pretty quickly runs into a big hole and has no idea where to go next, so it either falls into the hole and disappears, or it takes a wrong turn and ends up in the wrong place. This is not science*, but it’s how my mind makes sense of it.

But here’s the thing: every single brain with autism has holes in different places. And every single brain with autism has holes of different sizes. And all this means that sometimes the holes are not at all in the way of where you're going, and other times they mean you cannot get there at all.

The map might have a hole where the information is actually supposed to start, so it never gets going. Like language: some kids have zero indication of autism in the language category – there are no holes there. Some kids have no words and not even any sounds, so there is very likely a large hole right where language was supposed to begin. They just can’t get going, no matter how hard they work. Or emotional attachment: some children cannot be touched without anxiety and others snuggle in and want their back rubbed with no issues at all.

Maybe the holes are in emotional regulation. Maybe they are in sensory processing. And maybe the holes are two steps in to the journey or maybe they are further down the road, allowing the child to start without any issues, but then running into a hard stop at an unpredictable moment. He used to talk quite a bit, why did he stop? We arrived at our friend’s house just fine, why did he fall apart once we walked through the door? And how big these holes are may indicate how long it takes to recover from getting lost or falling in. For some, it’s a fairly quick rebound. For others, the whole afternoon might be lost to a meltdown, or months of progress derailed.

So what do we do? Well, we do every single thing we can to fill the holes in the map, even though we don’t know how big or exactly where they all are. We watch. We listen. We make a hundred mistakes and try again. We commit to therapies and healthy diets and giving the brain and the body the best fuel we possibly can. And when our son simply cannot hear/understand/process what we mean when we yell “walk, please!” … we get out of the pool two dozen times and show him.

And do you want to know something? That night at the pool, just before we left, Cannon started to get out of the water one last time so he could run his short lap around again. But Alex kept at his persistent teaching, and yelled one more time, “Cannon, walk buddy.”

And finally, Cannon turned around to Alex, stopped in his tracks and said back to his daddy as if he was so proud of himself for finally getting it, “Good job!”

Yes, good job indeed, Cannon.

The holes can be made smaller, friends. And I also believe many – in some cases a lot of them – can be filled completely. And yes, it is a lot of work. Like Alex was honest enough to say out loud, everywhere we go, it’s work. Still, long gone are the days I stood at the refrigerator with a silent little boy on my hip. Cannon’s language is still very far behind and we still have to work hard to pull it out of him, but he can repeat and say virtually everything we ask him to. And more and more, he is putting meaning to those words his mouth can finally say. The road ahead is long, but when you look behind to see all the patches covering the holes and all the places he used to get lost that he’s not anymore, you look ahead and say “ok, let’s find the next one.”

*****

I don’t know. Maybe. No. Three phrases that have defined our journey with special needs more than any other. But while they may be the most used, they don’t carry the most weight. With every step of the journey, we remind ourselves of this:

God is sovereign. This, I know.

Is God working in all things – even disability – for one incredible purpose: to make His name and glory known? Absolutely.

Is He good? Yes.

*****

*I want to be sure I note that research and brain MRI’s do not show any visible “holes” in the brain of a person with autism. For the sake of both storytelling and understanding, that is an image made up entirely on my own. Like most metaphors, it both over-simplifies and falls short of capturing autism perfectly, but it has been a very helpful framework for us as parents to understand the work before us in loving and teaching our incredibly sweet boy.

The sun was falling slowly to the west, lighting up the tops of the wheat and the scattered wildflowers just gently enough to paint a layer of gold around them. I will never get over the way the world looks right before the sun sets; like it is at peace, content with itself for having given its best, ready for the rest it well deserves.

We had driven to the north side of town to meet our family at the orchard, dressed in corresponding colors for the yearly pictures. “I forgot the lollipops,” I said out loud.

“We will be fine,” Alex responded. “It will be quick.” Always hopeful, that one.

Cannon fell asleep on the drive, so when we pulled up we decided to just let him rest until we were ready to go take our pictures. It is easy now to see where we started to go sideways on this endeavor, and the decision to not wake him right then was the beginning.

After a few minutes the photographer arrived, and we made our way toward the blooming sunflowers for the big group shot first. Alex unbuckled Cannon and gently picked him up, whispering in his ear that it was time for pictures. He was out of sorts right away, I could tell. He woke up in an unfamiliar place with a lot of expectations, and then we started asking him to look at a camera and say cheese, which makes the list of the ‘hardest things’ for his mind to execute.

Even if I had remembered the lollipops, I’m sure this would have gone the way it did.

We tried. I tickled him and kissed his cheeks and let him hang the full weight of his body on mine, but this boy wanted no part of family pictures in that moment. So, after a few minutes, I told the group to keep on without us, and Cannon and I headed back toward the car.

That’s when I really noticed the sunset, and the visceral peace hovering all around. Everything I saw looked, well, perfect. The blemishes that cannot hide under the midday sun disappear under the filter of dusk, reminding me that Instagram has nothing on nature. The cooler air and the softer surroundings, all of it announcing the end of its work for the day. Then I noticed my heart, and even against the weight of a struggling boy, who was exceptionally difficult to carry while walking through the dirt in wedges, it was totally at peace.

No tears. No frustration. No embarrassment. No compelling draw to explain anything to the rest of the family or the photographer. In that moment I was just a mom doing what her son needed.

I’ve come a long way from the mom who needed her son to do what I wanted.

*****

It has been just over a year since we knew Cannon was autistic. I remember this time a year ago, at the end of a long summer, texting a friend who is a bit further ahead of us on a similar journey. She responded with such sweet empathy, and told me the first year was the hardest, but that her little one was improving all the time, that he has so many incredible strengths, and that it’s not easy but it’s going to be ok.

She was exactly right.

The first year was really, really hard. I did not know what to do with my son, I did not know what to do with all the opinions on why he is autistic, and I did not have the first idea how to internalize the comments and stories of others. I had no bandwidth for any one of the books a well-intentioned friend had heard was a good read, but I’d send a “thank you so much, I’ll look in to it” response anyway. I could not have named it at the time, but I spent much of the first year unraveling. I had put together a whole narrative on both God and myself as a mom, and thread by thread it was all being pulled apart.

What I can tell you now is this: I was looking at the world and trying to make sense of God. And I was looking at my children and trying to make sense of myself as a mom. When you get those things backwards, nothing really seems to fit. But when God graciously takes apart the story you believe you are narrating and puts it back together as the only fitting Author, it makes a lot more sense.

When I started with God, with his character, his story, his purposes, and all of the realities of life in a broken world, then everything else had so much meaning. But this did not happen for me overnight. In fact, I didn’t really notice how far we have come until the sunset over the orchard reminded me that just as the world makes its way around the sun every day and not the other way around, so does God need his rightful place at the center of each of our days, and not the other way around. As John Piper so beautifully says, "The healing of the soul begins by restoring the glory of God to its flaming, all-attracting place at the center."

So much of life comes down to hope, doesn’t it? And when it comes to autism—perhaps even parenting in general—the first thing you lose when your child is not doing something they are supposed to be doing is hope. I can look back at last summer and realize that what I had always believed about life, the story I had weaved together, was written around a lifetime of accomplishments, good reputation, “blessings” and other renditions of the beautiful American Dream. The foundation of my whole narrative was hope, but hope that was in those good things. I have had to learn that hope is only as unshakable as its object. 

So a year ago, God took it all apart and re-wrote the beginning. It is still hope, but it is in Him.

And when my hope is really in Jesus, all of a sudden my heart is bursting at the seems to have real hope for Cannon, too. Not just in progress, but in the story God will tell with his precious life, and the glory a little boy who sees the world so differently could bring to Him.  

*****

Once Cannon and I made it back to the cars, I found his juice cup and sat down with him at a picnic table. Together we waited for a moment, looking out at the horizon and breathing in the peace all around us. In just a few minutes, he smiled up at me and then got down off my lap—his physical indication that he was fine now. We went and found the rest of the family, and while I don’t think we got one picture with all the cousins that night, or even one where all of us were looking, we drove away with smiles on our faces. Alex reached over and grabbed my hand, and we laughed a little bit wondering why on earth we didn’t wake him up and give him a few minutes to run around in the place before throwing a chorus of resounding “say cheese!” at him.

This is our beautiful life. Not one day of it has taken God by surprise, and not one of them will be wasted.

The other night, Cannon joined his siblings and me in a game of tag— he has never done that before. He turns when we call his name now, he asks for what he wants with words and not pictures. He sleeps all night. He hugs his siblings. In life we tend to measure progress by big things or in big moments—like family pictures. He didn’t do so well in that moment, but he has had a thousand amazing little moments before and after that one.  

So, I hope. And I’ll keep hoping. Because this progress, these everyday miracles, is in its rightful place on the periphery, like the stars and the moon lighting up our lives. They are no longer at the center. Our life, and our hope, moves around the Son.

Last week marked an almost-forgotten memory for Alex and me. Not because it wasn’t special, it was. And not because we aren’t sentimental people, we are. This memory has just been a little bit buried by the here and now. Six years ago, Alex got down on one knee (during a college football game, because he loves me) and asked me to be his bride. We immediately drove to the mall for “engagement pictures” in the photo booth and did not let go of one another’s hands for the next five hours.

Every newly engaged gal knows what follows next: I stared at my ring at every opportunity. Hands on the steering wheel- look at my ring! On the elliptical- look at my ring! Typing on the computer- look at my ring! It was simple and modest, but I walked around for weeks just knowing that everyone around me must have noticed the new addition to my left hand, and all that it meant for me. I no longer had to pretend that I was buying bridal magazines for a friend. I could actually google wedding venues in the clear view of another person. I could plan, plan, plan and since I had basically been doing so secretly for about six years, this came very naturally. I was in love. We were in love. All we saw was love.

Still, Alex and I were blessed with very wise people around us during our engagement, so we were not living completely in fantasy land. We knew marriage would be hard. We knew we had to prepare more for a lifetime than for a party. We knew keeping God at the center of our lives was the only way to begin our life together. We knew.

But we also didn’t, because we had no idea what it would look like for all of those things to be true.

*****

Becoming parents will change a marriage in profound ways, because the love – and money and space and time— that was divided between two people must be not only be shifted around, but it actually has to grow to make room for a third, or fourth or fifth or sixth person. It’s simple math, really (or is it physics? I’m a words girl, I don’t know). If two things fit comfortably in a set space, when we add more we either have to redefine comfort or find a bigger space; but it’s hard for everything to stay the same without constantly running in to one another.

When Alex and I watched our son develop (I should say not develop) and land in the category of special needs, we were, in essence, handed something that takes up a whole lot of space.     

I can tell you that things get tense easily. So easily it’s scary. We started running in to one another before we knew how to adjust our space. There would be days early on where I thought Cannon was having a great day— good eye contact, looking up at the sound of his name, signing for more— and as I would share my optimism with Alex, if he did not match it, if he didn’t see the same things and feel what I felt, we would instantly be at each other. I would accuse him of being negative and pessimistic, and he would accuse me of not letting him feel what he needed to. And then the roles would reverse a thousand times: I would be feeling so low about Cannon’s progress and Alex would be feeling great about it; then I would think him ignorant and he would think me cynical. A long period of silent treatment usually followed these moments, as we both at different times felt like we had vulnerably shared that we were hopeful only to feel like our hope was batted away by one another.

And when two people can’t hope for something together, it gets all kinds of hard. Doesn’t so much of our pain come from misplaced hope?

But those conversations were, and still are, only the minor players. Permission to speak freely? Forgive the overgeneralization, but I think in general men don’t need to be happy to want to have sex. Women, however, often do. When a mama is just flat out low for months at a time, the bedroom is not exactly the most happening place. And that matters in marriage. It matters so much. Then there’s the budgets that need a major overhaul, the suddenly limited supply of babysitters because not just anyone can handle a little boy who can’t communicate his needs, and the fact that autism is just always on our freaking minds because it has to be: does he want raisins? Are the doors locked? Why is he crying? Are you taking him to therapy today? If we go to the birthday party do you want to shadow Cannon? Is he kicking his crib or hitting his head?

It all just takes up a lot of space.

There’s the general thought floating around out there that 80% of marriages with an autistic child end in divorce. Well, that’s not really true, but special needs absolutely puts a unique stress on marriage. We know it, because we have seen a hundred tiny splinters turn in to actual wedges between us in the last year. Every marriage has those splinters, a special needs marriage just has different ones—maybe more of them, but I don’t know that for sure. We all need guards in our marriages and we all need Jesus. Still, Alex and I looked at the very real evidence that many special needs children end up being raised by single parents at a time, and we said, “No. We do this together. Very imperfectly, but always together.” I don’t know how we could ever do it apart.

We don’t have a formula for navigating our marriage on this journey, but we have one thing that we believe has made all the difference: a burning desire for God’s glory. And that’s really it, that is our answer. So we start there and we end there. Alex led the way on this—this man has put more scripture in his heart and mind in the last six months than in our entire marriage. It’s his oxygen. When he is playing with the kids he constantly stops and says “guys, look at the clouds, did you know the Heavens declare the glory of God!” Sometimes Cannon will look up and sometimes he won’t, but I can tell you it is impossible not to feel held and provided for when you are saying out loud that even “the sky declares His handiwork!” Your eyes immediately find your son and you think “Yes, Cannon, your life declares the glory of God and the way he made you proclaims his handiwork!” God’s word instantly changes the way we see this struggle— as if we are in those moments not fighting it but letting God do what he will in it.

Daily we are finding that when we believe in the perfect ending of this story, God’s story, the same things take a much different shape. Our hope is reoriented to the only thing that can sustain it, the gospel. Autism, while it may make us weary many days, doesn’t loosen our grip on one another, it forces us to grip the cross like our life depends on it—because it does. But friends, I promise you, when we are grabbing hold of Jesus through the access we have to him in his word, He holds us. And then we don’t have to stay in the place of “why would God let Cannon go through this?” because we know: it’s for his glory.

*****

My faith in Jesus, and my marriage to Alex, is not the same as it was six years ago when I was blissfully unaware of the nuances of marriage and parenting and thought picking colors was preparing us for big decisions later on. Today, I realize that I know so much less about anything but desire so much more of Jesus, and that is because God gave us the blessing of our sweet boy. Autism woke me up to God’s redemptive plan, and it forever changed the way I hope my marriage reflects God’s glory. And while I will always have days that I want someone to listen to how hard this can be, or feel bad that it costs so much money, or have sympathy because school and vacations and holidays are always going to look different for us, what I want my life to say far more than anything else is this: “Come and see what God has done: he is awesome in his deeds toward the children of man… Come and hear, all you who fear God, and I will tell you what he has done for my soul.”

Alex, I'm so  grateful we get to do this together.