It’s not just a pair of shoes.

But it was a pair of shoes that had me literally sweating the morning of the first day of school. Since kindergarten, shoes have been a “thing.” He spent most of the first several years of his life barefoot or in footie pajamas. And when he did wear shoes- it was Crocs. Always Crocs. And nothing else.

But it has always been a point of contention for us, for him.

So when he did eventually start school, he wore Crocs. And then rain boots. And he loved the rain boots, usually wearing them until they had holes in them. Never mind the weather, once we went to the rain boots he had a hard time returning to the Crocs. So it could be 80 degrees towards the end of the school year and he’d be out on the field at recess tromping around in his boots.

But these damn shoes. When he became okay with socks (which was another miracle), we started to move towards shoes. You can’t just order shoes online and hope they work- we’d have to truck into Nordstrom, measure the feet, see which pairs might be deemed acceptable first based on appearance and then we’d have to try putting them on. And that’s where it could all go off the rails. Even the coolest red shoes can be thrown out if you put them on and they suck. Last year we purchased three pairs before we found the winner which ended up being some random brand from Amazon that literally cost less than twenty dollars.

This year I was prepared. Early August we went out on our first shoe mission. We found a pair that was cool, offered in red and even went and double checked sizes the next day. He tried them on, chased sister down the aisle proving he could run in them. He said they were great, but wanted them in red. Awesome, I found them online and ordered them right away.

First day of school arrives. We get the shoes on. The vetted and approved ones, in red.

He immediately shook his head no repeatedly and I could see tears welling up.

I got them off his feet as fast as I could and started sweating.

He wanted to wear slides. I told him that was against the rules.

I grabbed the only back up plan I had and I was sure it wasn’t going to work.

Sometime last year I had grabbed these super cute kids Nike Jordan high tops on sale. I have turned into a bit of a sneaker head and I thought that maybe I could convince him to wear them. I hadn’t yet.

I told him he had to choose between the pairs because slides are against the rules.

He picked the high tops.

The kid who refused shoes and socks for the majority of the early years of his life.

Who thought Crocs were the only acceptable kinds of shoes.

Who is known for many things, his flexibility not being one of them.

And he may have done it begrudgingly, but he wore them. As soon as I dropped him off on the first day of school, I RAN to the shoe store and bought a pair of low tops. I gave him the option to wear those this past week.

EMILY. THE TALL ONES ARE JUST BETTER.

It’s a kid who’s learning how to be flexible.

It’s a parent who’s learning to keep pushing, to keep asking.

It’s not just a pair of shoes.

They are pretty damn cool though.

I have stopped myself several times since school started because the urge to word vomit everything about him is….strong. I basically want to explain all the ins and outs of what makes him tick and the things he’s hyper fixed on right now and detail all of the what ifs even though a new teacher may never see or experience those things. It’s like I want the world to be totally prepared for him…even though I know that’s not realistic. The road won’t always be paved, and sometimes there won’t even be a damn road.

August marked ten years of OT for him, all at the same office with various therapists.

June marked four years of speech with the same therapist.

I guess you could say that any road we’re on- they built.

Or at least they helped us build it.

So much goes into building the kind of relationship with a kid that can continue to grow and evolve and stay productive over that amount of time. And damn these people have done it and done exceedingly well every time.

He’s a stubborn dude. He’s not going to be won over easily.

He’s a sassy mofo.

He tells it like it is, every single time.

He’s got thoughts and opinions and he’s not afraid to share them.

Early on in this current speech run, he cried almost the entire time because he lost at Candyland.

He refused to cut using a pair of scissors for multiple years at OT. Not because he couldn’t do it. Just because he didn’t want to do it with the OT.

But they roll with it, no matter what it is. They have learned to harness the power of negotiation with him, when to push and when to back off, and have learned how to push him forward consistently.

Road builders.

Having had them in our lives for so long has made me wish there were more like them. I could use one in every area of his life. It would make me way less stressed. I’d probably get more sleep.

But then today after school in the pick up line something happened for the first time.

The pick up line is long, and I was near the end. (That’s normal)

He was sitting on a bench and I saw him look over at me, so I waved

and he got up and walked towards me and got in the car solo.

Doesn’t sound like a big milestone does it?

It was big. It’s never happened.

He usually sits and day dreams. Waits until I get right in front of the line.

Waits until a staff member yells his name.

Little victories, that aren’t actually little at all.

So maybe I can hold on to my word vomit for longer. Maybe it won’t be needed this year.

Maybe he’s been the one building the road all this time.

I’m just glad he’s bringing us all along with him for the ride.

It was a quick TikTok.

Well intentioned, I’m sure.

“As we start this new school year, just a reminder that if your kids aren’t in special education, make sure you tell them to say hi to those kids who are.”

That was basically the gist of it.

Which is a great reminder.

I think.

But why do we need to single out the special education kids?

Why can’t we just remind ALL of our kids to be kind and say hi to ALL of the kids in their classrooms? In their grades? In their buildings? The one point I did like that the TikTok made was she said that even if those kids don’t say hi back, tell your kids to say hi. Because mine- he won’t say hi back. And it’s not because he’s rude or he doesn’t like you. It’s just not always on his radar to return the greeting. But he’s probably not alone in that.

Maybe this is just me. Maybe I’m up in the feels on the eve of another new school year.

I think that’s probably it, but I do think we should be telling our kids to be kind to everyone, not just the special education kids.

Here’s the thing about a new school year when you do have one of those special education kids.

Every year it’s literally starting over. And i know it’s that way for everyone, but some of these kids fall quicker into the routines and expectations than others.

Yesterday over coffee with a friend I was raving about particular school experiences we’ve had with him, and she asked me a question that I hadn’t really thought about before.

What made them different? What made them great?

And at first I said I didn’t know, and then it hit me that I did know.

And it’s so cheesy.

Or it just feels super cheesy.

They presumed competence and they prioritized including him.

And this crazy thing happens when you believe in a kid who sometimes doesn’t know how to ask for your vote of confidence- he starts to thrive. He makes jokes in class, he makes friends.

He takes that belief in him that you’re putting out into the universe and makes it his own.

Take it from someone who has had the front row seat for it- it’s an incredible thing to behold.

So here we sit- on the eve of a brand new school year, one with some changes for him.

Good changes. New challenges. Another opportunity for him to rise to the occasion, which he tends to do extremely well.

I’m excited, and I’m nervous.

I believe in him.

I believe he’s surrounded by kindness. (Seriously, he goes to school with some incredible small human beings) I believe that he will be supported and challenged throughout this year, and I believe that he will continue to succeed.

I also believe that with continued shows of kindness like saying hi to him (or anyone else for that matter), these kids will feel like they belong as a part of their school communities.

And that matters for all of them- special education or not.

We’ve always had a bit of a soul connection. 

Like, we typically wake up within five minutes of each other type of soul connection. I’ve spent so much of my life anticipating his wants and needs, choosing when to fight battles that will help further his growth as a person. I’ve gotten pretty good at it, really. He still surprises me sometimes- when I choose to fight what I think will be a battle and it ends up being a huge win. 

Last Friday I decided to fight the battle. 

It was sunny and warm. A friend invited us via text to meet up for drinks. Place is kid friendly, occasionally has chickens roaming around, a small playground and a sandpit. Fun vibes. Entertainment for all. 

I told him we were going to place that had the chickens. (he didn’t know the name.) I packed snacks and we were about thirty seconds from walking out the door when he told me he didn’t want to go. 

Okay but we’re going, I said. 

FOR HOW LONG. 

Forty five minutes. 

He accepted that, briefly. 

BUT EMILY IT’S DISNEY CHANNEL FAMILY MOVIE NIGHT. 

My first thought was “fuck”. He’s on this huge Disney Channel kick right now. Kinda funny, kinda annoying. But he checks the schedule, knows when the shows he likes come on and doesn’t like to miss anything. And so he was stressed. It wasn’t even a Disney movie, and it’s currently streaming on Netflix. And he didn’t really understand the DVR concept, but I still tried to explain it. 

He reluctantly agreed to go, but spent the entire time in the car negotiating down the number of minutes we’d be spending there.  By the time we got out of the car, before I’d even ordered a drink he had decided we were spending five minutes and he’d set a timer on his iPad. And that soul connection? It meant that his stress was pulsing through my bones. I decided this was a battle i was willing to fight. 

He ran off and played for a few minutes. But then he came barreling towards me telling me that the timer was almost up. Hey buddy, I’m going to finish my drink, I told him. We’ve all got to learn to be flexible, I thought to myself. And this was a chance for him to be outside, in the sunshine, running around with friends. This was a win, an easy win. 

He escalated quickly. It’s been so long since that’s happened, I honestly forgot how rapidly it can unravel. He was nervously pacing, asking me to drink faster, telling me that the movie was almost on, reminding me the timer was done. Eventually the tears came and that’s when I knew I had to surrender. I said a rushed goodbye to our friend, and we left. We got in the car, and he was crying, and within a few seconds I joined him. Soul connection. 

I beat myself up for a bit. Why did I choose to go? I should have known that was going to happen. I felt selfish. I felt like I didn’t push him enough to stay, that I gave in too easily. On the drive home, after he stopped crying, he was calm- peaceful, even. I had thrown a wrench in his plans, and this was not the night where flexibility abounded. And I get it- I like to have things planned out, I want to know what’s coming. It’s damn near impossible to surprise me (Kendu really loves that, LOL) and so it shouldn’t be surprising to me that this kid is wired in so much of that same way. But I also think I’ve done him a disservice sometimes- we’ve been too supportive or catered to him too often. It’s weird line to tiptoe. The thing is autism or not, sometimes you can’t just sit at home on a Friday night when the rest of your family is going out.

When we got home- we talked through it. It felt like he understood. The past five weeks have given me new insight into this delightful little person he’s becoming, while at the same time reminding me that I don’t have him all figured out yet. 

But all of that aside- the soul connection remains.

And hey Mike- let’s have a rain check. 

I might need to check the Disney Channel line up first though. 

Several years ago an acquaintance described me to one of my very best friends as “a real mover and shaker.”

I was honestly a little offended. I don’t know the person who said it well, and I was really curious what exactly she had heard that was making her say that about me. I mentioned it to a friend whose response was “well, I mean you kind of are.”

I stopped and thought about it and realized she wasn’t wrong.

Nowadays, I often describe myself as a recovering people pleaser. I’m trying to really care less about what others thoughts are on me and doing right by myself and those that matter the most to me. But that doesn’t mean my moving and shaking days are behind me.

I don’t think that’s who I am as a person though. I think it’s who I became when autism entered our lives.

You can’t be afraid to shake the trees as an autism parent.
You can’t be afraid to disrupt the norm.
But what you can do is work to leave it all just a little bit better than you found it.

Many years ago our movie theater used to offer a “sensory friendly” movie showtime. It was Saturday mornings, usually the newest kids movie offering. The lights weren’t quite as dark, the sound wasn’t quite as loud. The kids in attendance could ask questions loudly without parents constantly shhhhing them, and could jump up and dance in The aisles if the need struck them during the movie. It was awesome.

We took Seton to the drive in theater a few weeks ago and he talked almost the entire time. He LOVED the drive in, but the experience there made me send an email.

You might call it a moving and shaking email.

The theater manager remembered the sensory movie showings. Said she’d be willing to bring them back if there was demand. I made a few posts on FB and found out there was in fact demand.

And now? They’re coming back. I’ve gotten messages today from families that said they’ve never even tried the movies with their kids because they just knew it wouldn’t be successful and they were super grateful for this upcoming opportunity. There were even more families who said they’ve tried and had to leave shortly into movies because their kids couldn’t handle the noise, or the need to be quiet.

I’m glad I sent the email. I’m glad that the theater is willing to bring this back. I’m really glad it will create opportunities for kids and families to have a fun experience at the movies together.

I’m also grateful for that acquaintance who called me a mover and a shaker. Now that I’ve gotten past the offensive part of it, I’ve instead chosen to see it as a badge of honor.

Because if you’re moving and shaking in the name of leaving everything a little bit better than you found it- that’s a win for everyone.

The other night I had a meltdown. 

Full ugly crying couldn’t stop. 

Remember two weeks ago when I was lamenting the fact that there’s a significant lack of programs available for kids with any types of special needs in our area during the summer? But have no fear, we were going to do things and it was going to be great and all of that optimism I had? 

It left.

This is a kid whose interests are few. He likes legos. He likes building, he likes being given the ability to be creative. He likes bouncing a ball and jumping on a trampoline. He likes being around people. And in the first few weeks of summer, it felt like we’ve already exhausted those things and we’re now just hanging out with obscene amounts of screen time. Several of the parks here have been deemed TOO BORING, and he only wants to go to the zoo IF THE MONKEYS ARE FOR SURE OUT. 

Summer is supposed to be this period of time ripe with possibility, and for some of us it’s just a little bit of aimless wandering with more sunshine than usual. 

The next day I suggested a few things we could do- and in typical Seton fashion, he couldn’t choose. So we went to a park, a big one near our house. It wasn’t crowded, but he was the oldest kid there by at least four years. And this park- we’ve frequented it over the years. It’s big, more spread out- surrounded by some open fields, and a little bit of room to run. It’s actually the first park we took the now teenager before we moved here. And he was intrigued, and then navigated the entire thing solo. I followed him around for a few minutes (force of habit) and then realized so I sat in the shade and watched him. I thought of all the times before we’d been to this park, some pre-diagnosis, many after. I thought of one morning in particular pretty soon after he was diagnosed where we had a weird time window between therapies and I brought him there and all he did was sit on the bouncy toy for 45 minutes. 

Eventually he came over and sat in the shade with me and I asked if he wanted to go or play more. 

PLAY MORE. 

Play more. 

Okay.

And I started crying again because while I can be upset that those cool rad camps aren’t yet inclusive and willing to open their doors and their hearts to special needs kiddos, what I really need to do is check myself and lower my expectations…of myself. 

This kid? He likes hanging out with me. He likes bouncing a ball. And by that I mean he literally bounces one of those giant balls that they sell in the cages at the end of the aisles in Target all over the house, for MANY hours a day. He can basically enjoy himself anywhere, he finds fun in the mundane. So I don’t have to create a magical, crazy awesome experience for him on the daily. We can just play…more. 

I mean, after all- we do have a water table.

Sometimes I feel like my feet are firmly planted in two completely different parenting universes.

Today the 13 year old left on a two and a half week long trip to Europe with the grandparents. They’ve been planning this trip for two years and it finally got to come to fruition. She’s been packing for at least six days, and we’re beyond excited for her to get a chance to take this trip at 13. I’ve felt incredibly grateful that she’s got this opportunity and cannot wait for her to experience the world beyond her bubble this summer. When she gets back, the rest of her summer will be a revolving door of sports camps, sleepovers, walking to Target, hanging with friends- she will live up every moment of the summer. Except the ones where she sleeps in til noon- but that’s to be expected right?

Today I took my ten year old to Costco because he wanted a water table.

He told me this morning, “EMLEE PLAYING IN THE WATER MAKES ME FEEL HAPPY.” We’ve seen water tables randomly lately and he has been super drawn to them. Water is most definitely a sensory seeker’s dream come true- it can literally overwhelm all five senses. So we went to Costco and bought a water table.

See what I mean about parenting in two different universes?

Last week at speech therapy on what was the first official day of summer vacation, Julie asked him what he wanted to do this summer.

“CHILL. FLOAT IN THE POOL.”

She kept pushing him for some more activities.

“I DO NOT WANT TO DO NOTHING.”

And then my heart broke into a million pieces.

Summers with a special needs kid are different. They’re not summer camps and play dates and sleepovers. To be honest, a few years ago I stopped even looking at the potential summer camps for his age group. One year I was full of hope, convinced this was going to work and he was going to get to do a summer camp. I emailed the director and explained the fact that he has autism, and spends a lot of time in general ed classroom in school, and that he’s all around awesome. She responded back that it didn’t sound like it would be a good fit. Between her and the lady who when he was 3 told me he couldn’t play on a toddler soccer team and I should contact Special Olympics instead, it’s gotten super easy to just assume nobody’s willing to give him a chance. And for awhile I thought he didn’t care, that he was fine just hanging out with us at home and doing random fun things throughout the summer.

“I DO NOT WANT TO DO NOTHING.”

In this other parenting universe, I lay in bed at night and wonder if I did too much for him today. I wonder if we are teaching him all the skills he needs to be independent, I wonder when someone WILL take a chance on him. I laugh at the random things he told me during the day. Tonight I’ll smile thinking about the water table. I’ll start to think about tomorrow, and what we could do with our somewhat endless possibilities, even if they truly aren’t endless.

But here’s the thing: he shouldn’t have to do nothing. There should be opportunities. There should be inclusive summer programs. And not everything will be a good fit, and I don’t want to force things where they shouldn’t work- but damnit, something, someone should be willing to bring these kids in. And I know it’s a hard and probably daunting prospect, and maybe you don’t know where to begin? But ask. Our kids want to be included, they deserve to be a part of something awesome during the summer.

In this other parenting universe, today we spent 3.5 hours building a Kiwi Co. box, because I’ll be f-ing damned if we sit around and do nothing this summer. He was pretty excited about the prospect of having his own (thanks YouTube for teaching him about them) and did the project 90% solo. I was damn proud.

So when you ask about what our summer plans are- we’ll be here, with our water table, and our Kiwi Co. Crate subscription. (10/10, highly recommend, btw) Definitely some chilling. For sure floating in the pool. 100% guarantee of red popsicles in our freezer and cold Sprite.

And no matter which parenting universe I find myself in, we won’t be doing nothing.

When I think about fourth grade- I will think about the year things changed.

We didn’t know much going into this year- nothing about his teacher, only one friend in his class that we knew of.

It was a rough start. There was a day so rough in the beginning that a great friend Brought him a treat after school because she heard he needed cheering up.

Even with the rough start- he kept at it. We kept at it. There were no tears in the mornings. He started retelling parts of his day. He made friends. He did group projects, he did individual projects. He generally kicked ass. Did I mention he made friends?

When they tell you that your kid is on the autism spectrum, they will undoubtedly mention that your child will have trouble connecting with others. What we’ve learned in the last 8.5 years is that he actually wants to connect- but he happens to be the most discerning person alive, and when he realizes you’re worth his time, effort, and heart investment- he’s in. All in, 100% in.

But this year? He did it- he found his people. He made connections. He learned classmate’s mates, and they became friends. He participated in class discussions. He went from passive participant in school to active participant.

He didn’t do it alone. He’s been surrounded and supported by an incredible team, and this year- the teacher we didn’t know? She’s phenomenal. She created a classroom environment where everyone could thrive- including him. And these kids in class with him? They didn’t judge him. They helped him learn their names. They came alongside him instead of leaving him in the corner. There was a ringleader, sure- she showed them the depths of his personality and his sense of humor, and for that I will be eternally grateful. But they all wanted to be a part of his crew.

When I think about fourth grade, I’ll think about all the things he did- the ones he didn’t do it alone. I’ll think about the fact that this was the year when the conversation changed from “how do we fix/address these issues he has” (you know, like ones that are deeply engrained into his DNA) to “we’re going to make this work for him.” I’ll think about the fact that the only time I cried tears this year were happy ones. I’ll think about the fact that at times, it’s felt like a big dark tunnel- this whole journey of raising a kid on the spectrum in a public school. But the light is there, and dare I say it’s shining brightly?

Mostly, I will think about it with gratefulness in my heart. For his persistent teacher who held him to a high standard, and always believed he was competent no matter the task. For his classmates, for seeing a friend and not a nusiance, for your patience and encouragement, and for embracing him for who he is as a person. For that ring leader, who just with her presence unveils parts of him he usually reserves for those closest to him.

So here’s to fourth grade.

May there be many more years like this that follow.

I couldn’t have anticipated the significance April 2nd would hold to us.

But at the same time- I struggle with the need to have a day dedicated to “world autism awareness and acceptance.”

Because for a lot of us- (1 in 52 remember) the awareness and acceptance of autism happens every day, sometimes every hour of every day.

On Friday nights when he’s hanging out with us.

Not a birthday party, not a sleepover, or a weekend trip with a friend’s family.

Our Saturdays are usually wide open. There’s not an out of town baseball tournament or early morning soccer games.

He doesn’t get invited on play dates.

And that’s okay- truth be told, I think the time we get to spend with him is an incredible gift. To have the front row seat to the intricate workings of his mind and heart? That’s something incredible.

But today, on this April 2nd- the thing that’s burning in my soul isn’t the need for awareness or acceptance of autism.

It’s about the inclusion. More specifically the lack of inclusion.

The dictionary defines inclusion as “the practice or policy of providing equal access to opportunities or resources for people who might otherwise be excluded or marginalized, such as those who have physical or mental disabilities and members of other minority groups.”

Inclusion isn’t hard, and it shouldn’t be complicated.

Inclusion is NOT being told by a recreation department when you email and ask about enrolling your autistic kid in their soccer program that maybe you should contact Special Olympics because their program won’t be a good fit.

Inclusion is NOT being told that your kid can’t attend the new school in town because the special education program that he needs to support doesn’t exist at that school, despite the fact that the school was touted as being meant for out of the box learners and has a different learning approach that you feel like he would thrive in.

Inclusion is when his kindergarten teacher sent me a photo every day of what he chose to participate in at center time so that we could have the conversation about what happened at school every day after school, just like his peers would have with their parents.

Inclusion is when we signed him up for t-ball at six and ended up with the most incredible coaches who met him with grace and patience, despite the challenges that come with trying to get a kid with less than stellar joint attention skills to pay attention to a ball being hit.

Inclusion is when his teacher chooses to involve him daily in writing his homework in the planner, and writes his specific homework on a post it note and has him copy it from there rather than the board because his homework can look a little different, but she wants to ensure that when he’s in her classroom, he has access to the same activities and routines that his peers do.

Inclusion is when a huge corporation like Disney provides a pass for people with disabilities allowing many families (including ours) the chance to take our family on a Disney trip that we couldn’t do successfully without it.

Inclusion is Nike making tennis shoes that don’t requiring ties in sizes larger than preschool.

Inclusion is meeting these kids where they’re at sometimes, and not always looking for the easiest way to do it. Sometimes inclusion takes more work, more patience, and a little more time, but damn these kids deserve it. And the typical kids that are in these scenarios with them deserve it too. They deserve the chance to learn that not everybody thinks the same, looks the same, acts the same- but no matter what, they all the deserve the chance to be a part of something.

I’m glad to be here, in a place where inclusion is a discussion. But what I want- what most parents of kids with disabilities want? We want action. Stop talking about it. Do things to make it happen. I promise, it’s worth it.

He’s 10 now. Almost 10.5, I guess. He’s getting taller, more opinionated. I think he’s getting funnier, but my guess is that the wit has always been there and is just flowing out more freely now than before. He’s a video game expert. He can order for himself at a restaurant. (Okay, maybe he can only order for himself at The Float.) He can do math mostly in his head, like 2 and 3 digit multiplication. He doesn’t get your jokes usually because he’s the most literal kid I’ve ever known. (he told me yesterday that April fools day is the dumbest day ever) He still eats half moons for breakfast and jumps at the chance to have French fries. He’s still got the art of a well placed f-Bomb down, and hasn’t done it at school in awhile. (#littlevictories) He’s become the biggest hype man ever, often saying COME ON YOU CAN DO IT! I BELIEVE IN YOU. YOU JUST HAVE TO TRY HARDER. He’s learning to advocate for himself. He now prefers slides over Crocs, which I guess has been a long time coming. The other day he invited our friend to come to The Float with us and when she said she couldn’t, he said COME ON JULIE JUST GET YOUR SHIT TOGETHER AND COME TO THE FLOAT, which I’m pretty sure should be their new marketing slogan. He’s got the best sense of humor, and occasionally still the most erratic sleep schedule. He’s incredibly hard to say no to. Being his mom is one of the best things that’s ever happened to me. I’m grateful for the shining examples of inclusion that have happened to us throughout this journey, and for everyone who has been a part of showing us what that can be and what it can look like. And I’m grateful for that, and remain hopeful that we can be a part of moving that forward, whether it’s April 2nd or not.

#ahoybluesailor





December makes me feel reflective. 

Eight years ago, we were at a Christmas party put on by our early intervention provider. A super well meaning staffer asked me how things were going- at this point we’d been enrolled in early intervention services for about six months. 

And she asked me, and I burst into tears. And to this day, I can replay the conversation almost like a movie in my head. I felt like he was capable or more, and we were missing something. She suggested a developmental pediatrician, but mentioned they were extremely hard to get into. All I heard her say was that they existed, and within the next 14 hours I had secured him an evaluation appointment the day before Christmas Eve. And that developmental pediatrician who was allegedly going to be impossibly long to get into? He had an appointment open up a week later- and in a span of about 12 days from my meltdown at that Christmas party- we had what we probably always knew was coming- an actual autism diagnosis. Which is a fun thing, because you think that maybe you’re going to get answers and you really end up with a lot more questions than answers. Nobody has a glass ball that sees the future, so you get a lot of “well typically, kids on the spectrum do __________.” And it’s fine, because they’ve got to say something but what they’re saying is this huge and somewhat vague generalization that’s based on hundreds of thousands of kids who have carried an autism diagnosis. And the beautiful thing about that diagnosis? Or any diagnosis? Every kid is an individual. And they’re all different. And that’s okay and it’s this incredible thing to have a front row seat to. And with that front row seat comes the honor of witnessing the big stuff and the little stuff- and I’ve been thinking a lot about that lately. 

That day in December when he was diagnosed- he was walking, but not talking. There were sounds, but they didn’t really mean anything. He didn’t point, he didn’t respond to his name. And so from that day on- we did all the things. Tacoma for therapy, Seattle occasionally for doctor appointments- we did them all. And then the day came that he went into Kindergarten and let me tell you, that was terrifying. All of a sudden my front row seat became one that wasn’t even in the stadium and had to rely on any shred of communication from other people who didn’t know my kid like I did. And four months into that kindergarten experience, this happened: 

And that? That’s another conversation that I can replay in my head like a movie. He got off the bus and at this point, I’d asked the same question every day since school started and I’d never gotten an answer. 

But then I did. And I remember crying. I think I texted Ken. It was one of those moments, one of those things that the magnitude of it- it’s just hard to explain unless you lived it. 

December makes me reflective. 

That conversation happened four years ago. Four years prior to that was when he was diagnosed.

Which brings us to today. Last week he explained in detail where he sits in the classroom. Like, “I SIT IN THE TOP RIGHT CORNER SO NOBODY IS ON MY RIGHT IT’S JUST THE WALL. AND A GIRL SITS ON MY LEFT BUT I CAN’T REMEMBER HER NAME.” (Ken and I decided a few years ago that he speaks in all capital letters. Everything is full of passion- math homework, or talking about his favorite video game.)  His teacher sent a note home saying he was on fire that day, and described the day as awesome- a fact that he was incredibly proud of. A few days before that, in an attempt to keep our home somewhat PG-13 I described something as awesome AF. He immediately said to me, “EMLEE AF IS SHORT FOR AS FUCK.” And I mean, he obviously wasn’t wrong, so I just laughed and said yep, you’re right buddy. 

Sometimes I think about the things they told me eight years ago in December that he may or may not do and I laugh. Who could have predicted this child? This kid who is the wittiest, funniest, sassiest little dude that you’ve ever met. Who would have known this was where he’d be now?? The path is long but dude, the work is worth it. 

December makes me reflective- because amidst the holiday chaos, and the parties and the presents being wrapped- somewhere out there, families might be getting a diagnosis they were expecting for a two year old kid who is a bit of a mystery. Oh man, I wish I could tell that family what I wish somebody had told me- hang on tight, because it’s going to be a ride. Trust your gut, because it turns out you’re right, and nobody knows him better than you do. That speech you’re fighting so hard for him to learn? It might include a lot of swear words, but that’s okay. The people who are about to come into his life will change his- and yours. And nobody will make you laugh harder than him- especially when he masters the art of a well placed F-Bomb by age ten. 

December makes me reflective- not because I think of the day eight years ago as a day that our lives changed- but more of a benchmark. A beacon in the sea. And then I think about all the places we’ve been since that day, and how far he has come and how hard he has worked? It’s one of the best front row seats I’ll ever have. And for that, I’m grateful- all the time, not just in December.