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. 

I got this text yesterday before I left for Costco. 

I spent the five minute drive to Costco in tears. 

There’s always one- there’s always been one kid, usually a girl who has connected with him on an out of this world level. Every year since preschool, that’s been the case. I don’t know what exactly it is that they’re drawn to but I know I’m unable to really explain how much it means to me, to us. When his sister gets in the car after school, she doesn’t stop talking for about twenty minutes. She relays everything exciting and occasionally random that happens throughout the day. The good, the bad- she tells it all, just like it is. When he gets in the car, he immediately reaches for his ipad and tells me his day was good with no additional information. I’ve learned since Kindergarten how to gleam other details about his day to ask him about- and he will typically engage me in those conversations. But his weekends aren’t full of sleepovers and invites to friends’ houses- and that’s okay. He’d usually prefer to be at home- and we walk this thin line of trying to honor that but also to push him to do things outside of his comfort zone. 

This girl- the one who invited him to play Simon Says- has been the one since second grade. The sped teacher sent me a photo of him sharing during show and tell and she was front and center looking on like a proud mom. I was so touched that I sent the photo to her mom and we’ve since become good friends. This kid is everything you want to raise your kids to be- outgoing, caring, vibrant- she just oozes happiness and radiates kindness. You can’t help but want to bask in her light, and it shouldn’t surprise me that he’s connected so hard with her. When I got that text yesterday I should have known it was her- but I was so overcome with happiness and hope that he was playing with other kids at recess. He tends to use recess as his own time- which I get. School is a lot for a kid who doesn’t necessarily like to have people up in his business. I’d need time to breathe too. But this thing, this instance felt like he’d just scored the winning touchdown. I was so overcome with emotion when I got to Costco I sat in the car and cried and made a video where I described the moment as simultaneously beautiful and heartbreaking at the same time. And it was, it is so much so that I’m crying as I sit here and type this. I wasn’t thinking about the weekends without friends to hang out with, all I was thinking about was the fact that as little as this moment may have seemed to anybody else, it was huge to us- it was huge for him. I talk a lot about little victories because that’s what we’ve built a foundation of in this house- there’s a lot of non-traditional firsts that we get to be a part of. And i’m grateful for them- all of them. But today, I’m exceptionally grateful for all these kids who have made the choice to bring him into their worlds, and even more so that he’s willing to follow them. But this one- the one who’s been around since second grade? She’s special. And I know he sees that- but I’m even more grateful that she sees that in him. 

Oh yeah- and those non traditional firsts? This week we learned he mastered the art of a well placed “your mom” joke. So…balance?

She broke me in. 

He broke me down. 

Ten years ago today the sun was shining. It was unseasonably warm, and I remember basking in it on the way to the hospital- hoping that maybe it would make the anxious excitement that was encompassing me turn into just excitement. It didn’t. He didn’t cry when they pulled him out, and I remember thinking that was weird. He softly cooed and chatted to everyone in the room, and even my doctor commented on that. He was big- he didn’t look like a newborn who had just joined us earthside. He looked like a 3 month old, with a full head of hair, a personality that started to show immediately and cheeks for days. We joked that for the first several years of his life there was Momma and not Momma, and I’m pretty certain that phenomenon began when they put him in my arms the first time. 

I didn’t know then what the next two years would hold, but damn even if I did- I’m not sure I would have done anything different. He loved me endlessly, and cried when he was in almost anyone else’s arms. I think our connection was built in those first years because it would build me up for the next several years after autism became an official part of our lives. And when it does- one of the things people will tell you is that the gap will begin to widen as your child gets older. They’re not wrong- it does. There are a lot of things that a typical ten year old will do on a regular basis that he can’t or just won’t. But what they don’t tell you when you get that diagnosis is about how the gap wouldn’t matter because you’re too busy marveling at the way that this kid sees the world you forget about all the things he isn’t doing. Because what he IS doing- the shit he says, the way he views the world, the way he makes you earn a spot in his life and in his heart, the unabashed honesty with which he communicates, the passion he feels in his heart about so many things- oh man it just takes your breath away. 

He broke me down in all the best ways possible when he was born. I thought I knew what I was doing, I thought I knew how to parent, I thought I knew how to handle tricky situations, I thought I knew how to communicate. I didn’t- and he taught me that. He’s continuing to teach me that every single day. 

When he turned five, it felt monumental because five meant the autism diagnosis had been in our lives for over half of his life. Today he turns ten, and it feels monumental and reflective because the fact that we’ve been doing this for ten years?? It feels like it needs to be celebrated. Parenting isn’t for the faint of heart, and special needs parenting is its own breed of special requiring more patience and love than I thought I had in me. But this kid? He’s taught me to see red when everyone else might see blue. 

Happy 10th Birthday to the kid who changed our stars. 

You know those people who can’t take a compliment? The ones who, when you offer up a complimentary word or phrase to them that you genuinely mean, either deflect it or just simply laugh? Well, sometimes they cry, because they just don’t know how else to respond.

If you don’t- you do now. 

I’m one of those people. 

I don’t know if I always have been or if it’s one of those things I’ve developed as an adult. But I’m exhibit A. 

“You’re such an incredible advocate.” 

“You’ve got the best laugh.” 

“You are doing everything right for him.” 

“You take bomb ass pictures.” 

All actual words people have spoken to me, all of which have received a mix of an awkward smile, laughter, and in some cases, a “well we’ve just done what anyone else would do in our situation” as a response. And I’ve always believed the last part is true, even when I eventually learned it’s not true at all. 

For better or worse, I’ve never seen myself as others see me. And that has proven to be both a good and a bad thing- depending on the situation. You see(or hear!) loud- I see passion that spills over. You see bomb ass picture taker- I see mediocrity, who may never live up to what I consider to be the standard of excellence. You see an incredible advocate- I see a pain in the ass who administrators hate dealing with. 

Maybe all of that is why I don’t see him the way others do. And that…well, that has always served us well. He was eighteen months old- and I just KNEW. I knew something was off. Our pediatrician didn’t see a reason to worry, but gave me the number for Early Intervention, which eventually set us on the path to diagnosis. 

I’ve always been drawn to the people in our lives who see him differently. When he was a toddler, he was noisy, stubborn, didn’t communicate, couldn’t self soothe- the list of things he couldn’t do was substantially longer than the age appropriate things he could. One by one, the steady stream of therapists ranging from early intervention educators to occupational therapists with years of education and experience came into our lives. And they saw him…they didn’t see his lack of ability, they saw his potential. They didn’t care that he wore pajamas all the time, they saw his willingness to try whatever task they put in front of him. And because they saw something different when they looked at him- he responded differently. He connected better. He responded. It’s an incredible thing, this whole “put your kid in a variety of therapy” journey. We moms specifically, grow these children for nine months and then they’re born and somewhere along the lines instincts take over. You figure out how to diaper, how to decipher cries, and nature takes over- until it can’t. Special needs families live in this alternate universe where we’re faced with seeking help for our children- and in doing so, we’re saying to each and every therapist “I can’t do this alone…I created this kid, but I don’t know how to help him.” There’s an unspoken bond between a good therapist and parents…the ones who see your kid realistically, but optimistically. They’re able to force a change in perspective- where you see sleepless nights because kids with autism are notoriously horrible sleepers, they see the opportunity to teach regulation and self soothing techniques- you see a lack of communication and they see the chance for your kid to teach them everything they know about their favorite video games. 

This autism thing- it’s taught me a lot since it officially became a part of our lives. I’ve learned more about dealing with insurance companies than I ever thought I needed to know, I’ve learned how to fill out 37 different parent evaluations of my kid, I’ve learned how to survive on little sleep. But the thing I find myself the most grateful for? He sees the world so incredibly differently- and every day he’s teaching me to see the world, and myself through a new lens. 

Maybe next he can teach me how to take a compliment. 

All babies cry when they get their first bath.

Right?

He didn’t. He was born with a head full of hair. I remember the nurse washing his hair after he was born and him gently cooing.

“Oh you like this!” she said to him.

When we gave him the first bath at home, we had the camera ready for the crying baby in the bath photo like a rite of passage. It never came. He sat in the water and chilled. Infant swim lessons at the Y? He was more relaxed about the whole thing than either of us. The first time we took him to the coast, you couldn’t get him away from the waves. He ran towards them, and then away, and then back towards them for hours- and on the Oregon coast, that water is NOT warm. A few years ago when we were in Virginia Beach- he couldn’t resist the warm water and spent hours in the waves, clothed. Last summer we spent a few days in Bend at a hotel with a pool- and he declared that swimming is the best thing in his entire life.

The water makes him feel…invincible.

The words are endless. Eye contact? It’s non stop.

When he’s in the water, nobody’s calling the shots except him.

If I had to guess- when he’s in the water, life makes sense.

Nobody’s correcting his pencil grip, or his sounds.

Can you imagine feeling invincible?

When you’ve spent your life learning how to navigate a world that can be equal parts confusing and inconsistent- what does that feel like to finally be on top of it all? I
imagine invincible is the best way to describe it.

This journey- with its consistent inconsistencies, the self doubt, the questions of are we doing enough? Are we doing too much? What does this all look like in a year? In 5? In 10? It all fades away when you realize that, even for a second- you’ve given him the gift of becoming invincible.

1 in 54. 

More likely in boys. 

Celebrated once a year for an entire month dedicated to raising awareness and acceptance. 

Autism. 

When your son is diagnosed at 2.5, the gap seems small. There’s a few things here and there that you start to notice- it’s why you even had the appointment where he was diagnosed. Nobody tells you that eventually the gap begins to widen, that for awhile you might not sleep really at all, that even though you created this small human it feels like you have no idea how to relate to him, how to communicate with him, or how to help him. That at 3.5 for the first time he’ll tell you goodnight and you’ll be reduced to a puddle of tears. That when you introduce legos into his life, it’ll be the beginning of learning how he sees the world. 

Autism. 

Nobody warns you that you’ll spend nearly an entire year of kindergarten waiting for the day he’ll come off the bus and actually tell you what he did at centers. That you’ll go through a 25 pound bag of rice in 2 weeks- because it’s one of the only foods he’ll eat, and he eats it in large quantities. That when he loses his first tooth, you’ll have no idea because- well he has no idea what happened to  it. Nobody tells you that a good therapist (speech, OT, or ABA) can change everything- for both of you. Nobody will tell you to trust your gut- or if they do, they’ll encourage you to trust the experts- who are experts on autism, not your kid with autism. Nobody wants you to be the one who rocks the boat. 

Autism. 

The cliche goes that families of children on the spectrum celebrate and observe autism awareness and acceptance all year long- not just in April. And to be honest, I roll my eyes a little bit when I read the statement, although I suppose its true. Autism is so deeply woven into the fabric of our family at this point, it’s hard to remember a point in our lives before. We’ve managed to surround him and ourselves with others who don’t see a diagnosis and a kid- they just see a kid. 

What does autism acceptance look like? 

For us- it’s a best friend who invites him to her birthday party, even if he’s the only boy. It’s her going out of his way to make sure he’s included, and going to bat for him. It’s spending money on a red bird cake, even though you know he’ll never in a million years touch it, because that’s all he wanted for his birthday. It’s buying the day old bread from Jimmy John’s- because he loves it. It’s buying all the red hoodies, because we all know red is the ultimate color. Its friends who throw a lifejacket on him and coax him into the water on a blazing hot August day, patiently and intentionally talking him through swimming. It’s iPads and xboxes, and recognizing that somehow this kid might have more world knowledge than I do when he teaches me things like the meaning of yeet. It’s buying playground balls knowing they’ll never be used outside because bouncing a ball around the entire house is way more fun. It’s having friends who ask what they can do to help make him more comfortable when he’s at their house. It’s declaring a Turtle Day- and going all in, wearing the onesie, visiting the turtles, and coming home with a new plush turtle. It’s french friends and half moons (pot stickers), and bananas and Bob’s Burgers because “IT’S THE FUNNIEST SHOW EVER!” It’s him nailing the “Work” in Hamilton’s “The Schuyler Sisters” because he’s heard it ten thousand times thanks to a slight obsessed sister. It’s declaring Daddy to be “THE WORST DRIVER EVER” when he takes a roundabout too hot and French fries spill everywhere. 

Autism. 

It’s some nights with no sleep…okay, it’s a lot of nights with little or no sleep. It’s trying to stifle laughter when he yells that the drop off line at school is TAKING TOO DAMN LONG, or when he pokes a classmate and tells her he is BEING ANNOYING when she asks why he did it. It’s pizza Fridays, and pajamas and the willingness to just be who he is….all the time. 

I still remember sitting in the room at Mary Bridge when Dr. Tripp told us “your son meets the criteria for an autism spectrum disorder diagnosis.” 

I said okay. 

It didn’t change anything that day. 

It’s changed a lot of things since. 

I used to wonder where we lost him…to try to find the moment. I felt like if I could pinpoint it, it would change something. I never found it, and it wouldn’t have changed a damn thing if I had. Just like his brown eyes and scrunch nose smile, it’s a part of him. It’s a part of us. 

Today, April 2nd is World Autism Awareness Day. This day has shifted for me personally since the first year we were officially a part of this community- the 1 in 54. I wanted people to learn what it was like for us, to be raising a small child on the spectrum. I wanted to stop the stares at playgrounds, and in grocery stores. I wanted him to fit in the box. I realize now that the box that he lives in is so much bigger and more vibrant than I ever imagined it could be. 

So today, we celebrate- a little dude who came along and challenged the status quo, loves bigger than most adults I know, and has the best sense of humor in the entire world. We celebrate the challenges, because they’ve pushed us to grow. We celebrate the victories, because we’ve built a network of people who are right here with us cheering us on. We celebrate the opportunity to bring people along on this journey with us- because he’s ours, but in sharing him with all of you- I hope you can see him and hear him for yourself. 

So maybe it is all about autism awareness after all. 

For a long time it was easier to list the things he wasn’t doing.

Sleeping through the night.

Self soothing.

Eating a variety of foods.

Talking.

This autism thing? There’s not a road map or a crystal ball. You’re never super sure what you’re going to get on a given day. Will he sleep through the night? Eventually, probably- but not consistently. Will he able to self soothe? Yep, but about a year and a half after his peers. And the food thing? We’re still working on that. But one of my favorite things about this life is the shifted perspective and the true appreciation for little victories. Like the first time he wore socks and shoes to school. Or when he got off the bus in Kindergarten and actually told me what he did for Choice time at school without me asking. Or when he answered the door that none of us heard for the pizza delivery. (That just happened and he didn’t say a word to the girl just took the pizza and closed the door. Kind of hilarious)

But this one?? Seeing this today when I pulled up my Timehop took my breath away. And it’s not because I didn’t know he loved me until he said it that night- the thing about this kid is he and I speak the same language, and we always have. So I knew. But they never asked on the therapy intake forms if my kid had told me he loved me yet, and so I had no idea just how much that moment would mean.

Perspective and little victories.

Here’s to more of both for us all.

And in case nobody’s told you lately, I love you.

“We don’t know what he’ll look like in the future- emotional and social issues are common in children on the autism spectrum.” I remember the developmental pediatrician saying the day Seton was diagnosed. He continued on telling us about how he may have difficulty relating to other people, even ones who are close to him. 

 Let me tell you about this kid- he feels BIG. One of his most commonly used phrases when he’s upset is I AM RAGE- and I love the phrase, because haven’t we all been there? When you’re so pissed off at something, a person, a situation- you’re not just feeling it, it BECOMES YOU. The opposite is true- when he’s happy, the excitement literally bubbles over him and comes out of his hands that you might mistake him for a bird trying to take flight. As big as he feels- happy or sad, those reactions have typically been reserved for Disneyland fireworks, playing a new video game in a crowded Best Buy on Black Friday, rain when we’re leaving for school in the mornings, or being forced to wear pants. 

So when I got this text message from him a few weeks ago, I was concerned.

I had just left the house to run an errand when his name popped up on my phone- and then I saw the angry faces. I facetimed him and was met with his ugly cry face and loud sobs. 

“YOU DID NOT TURN ON FOOTBALL!!” he yelled. 

It was Tuesday night- there wasn’t any football to TURN on, and I explained as much to him. He kept crying and hung up on me. Riley called me a few minutes later and explained that she heard him crying and asked why he was crying. 

“BECAUSE THERE IS NO FOOTBALL ON FOR MOMMA!!” he yelled. 

“Why do you want football on for Momma??” asked Riley. 

“BECAUSE FOOTBALL IS THE BEST SHOW FOR MOMMA!!” he responded. 

If you know me well, even if you don’t know me well- I LOVE football. When you’re raised in Canton, Ohio, it just happens. When you go to Ohio State, it happens on an even deeper level. When our kids were infants and Ohio State was playing, Ken wouldn’t let me hold them, and with good reason. I’m loud (louder than usual), passionate- much like someone else I know. When a game goes well, I can’t stop smiling about it- when a game doesn’t go well, I refuse to watch Sports Center for days. Seton is actually named after one of Dan Patrick’s ‘Danettes’- and Gus (our giant goldendoodle) is named after former OSU Running back Zeke Elliot. (Gustopher Ezekiel) So football has been in Seton’s life since the womb, literally. When the NFL agreed to play a season this year- I was ecstatic. When the B10 decided to play, I was even MORE ecstatic. Our mornings this year have been spent watching NFL Network’s “Good Morning Football” as we get ready for school- and Seton now refers to them as my friends. On the morning they were back in the studio together- he yelled “MOMMA YOUR FRIENDS ARE NOT ON A CALL ANYMORE!” One of the weekly segments is called “Angry Runs” and he told me one morning on the way to school that “YOUR FRIEND WHO WAS YELLING IS RAGE.” 

One of the other things the experts will tell you about your child with autism is they’ll have trouble connecting with people- with YOU, relating to others, understanding- and your kid might, for a few years. 

But you know what? There’s nothing like the moment you realize after all this time, when you thought he wasn’t paying attention- he knew what was going on all this time. And not just that- but he cares- and he wants you to be happy. 

Just remember- the experts might be right. But they might also be very wrong.

I lost my shit last week. 

It was bound to happen, and it didn’t actually include any swearing or yelling at anyone. But In the span of 3 hours I somehow managed to ugly cry on three different calls with two different teachers and a para. I was overwhelmed and frustrated and couldn’t see through the clouds. I don’t always have it all together when it comes to school stuff- in fact, there’s an unspoken kind of joke anytime there’s an IEP meeting we have to sit in- nobody says it but they just always set the Kleenex box near me. I’ve accepted it and they in turn have all accepted it also. But this was the kind of overwhelmed frustration that comes from charting new territory- with ridiculous self-made expectations. 

This stuff sucks. The pandemic and the way it has turned the world upside down, the crowd-less sporting events, the businesses that have been lost, the division of the world and society? It’s NOT fun. But for the most part, we have soldiered on since March- even enjoying the bonus of “forced” family together time. It’s been, dare I say kinda fun? 

Enter remote learning. And not just remote learning, but remote learning with an incoming sixth grader who’s never set foot in her new middle school, and a third grader with autism who has had the phrase “lacks joint attention” written about him on every evaluation since his very first one at eighteen months. After I celebrated the fact that we were on time to his first call of the day, it was downhill from there.  My unraveling happened when I watched him sit there, wholly disengaged with a teacher he doesn’t know, and a class of kids he mostly has never met. Trying to finish the assigned class work for the day was when he unraveled. He yelled at me that this was TOO HARD and he just wanted to be all done. Me too, I thought. Me too. 

The thing about all of this when it comes to schooling? It’s SAD. We didn’t know when they left school on a Thursday in March that they still wouldn’t be back. And yet here we are, a week into a new school year with the same scenario playing out. This isn’t the way middle school is supposed to start for brand new sixth graders. It’s not the way to hone social skills that make up 80% of a kid’s IEP goals. BUT, this is the way things have to be- and I 100% believe in our PSD Board and admin who made this decision. But that doesn’t make it any less stressful- for parents, for teachers, for EVERYONE. And dude, I want to be flexible. I want to be carefree and not stress about it.  But the thing I’ve realized over the last week? I have put the pressure on myself to make exactly what happens at school during the day, happen at home. Our teachers are exceptional in our district-  I’ve known that all along- it’s one of the reasons we chose to buy a house here. And I love what they do for our kids SO MUCH- I don’t want them to miss out on that. I want them to have dynamic lessons, to come home excited about magnets or sharing awesome Social Studies lessons they learned. And maybe in a few weeks when they’ve gotten to know their teachers, that will happen. But for now- I’m going to stop putting pressure on myself to recreate that. We’re going to continue to give grace to everyone around us- but, from here on out I’m going to remember to start with myself. 

You might say I’m a card carrying member of the special needs parents community. We’ve been at this a long time- so it’s a fair statement. He turns 9 this fall, which means that over 75% of his life we’ve been on this journey. We’ve made a lot of hard decisions- therapy providers, schooling, medical procedure decisions. Ken would describe me as the least decisive person ever- so when we’ve come up against the hard decisions, it’s a process for me to figure out what’s best. Humble brag- I’ve gotten pretty damn good at following my heart and have always felt like the conclusions we’ve come to were the best decisions for him. Which is why the current situation we find ourselves in has left me damn near paralyzed with indecision, fear, and uncertainty. 

When we chose to enroll him in PSD, I always felt like we could try it for a year or two and go from there. I knew in the back of my head that we had other options- and just kept my fingers crossed we never had to use them. Kinder and 1st grade were roller coasters, but the good mostly outweighed the bad so we soldiered on. But second grade- oh man. The heavens opened and shone down on us and all the pieces fell into place. The words “thriving” were used to describe him at school, and I felt like THIS was what we’d been waiting for. The friends in his class, the paras, the options teacher, his 2nd grade teacher- it’s what I have written in the perfect story of his second grade year. We fell into this awesome rhythm, Kristen had hysterical stories for me at pickup daily- and he was truly thriving. Enter COVID. We were fine- truly. Despite mourning what we lost in his in person connection with staff and friends at school, having the opportunity to work with him at home was a total throwback for us. That’s where we started- and while the door was no longer revolving with therapists, it was a chance for us to address behaviors and concerns that we saw at home. And…it was fun. I’m certain he didn’t actually learn a new academic skill, but we made it work, not even considering the possibility that we wouldn’t be able to return to in person schooling. But now…here we are. 

And I get it- I totally understand that we cannot begin in person learning. I’m not advocating for that,  although I’d love for it to happen for both my kids- for ALL of our friends, also. However- here we are, less than three weeks before school starts without any real guidance. Seton is not our only child, but he does require the most assistance when it comes to remote learning- and as such, I’m faced with extreme uncertainty about knowing what the best course of action is for him. This spring required me to keep a detailed daily schedule so we didn’t miss a zoom call, and an extensive coordination of making sure we tackled each task that his teacher had assigned them for the day. It was exhausting. I love our Options teacher dearly- I love the paraprofessionals who have become emotionally invested in my kid and his success. I love sending him to school each day knowing that he’s in the best hands possible. And I recognize that PSD has said repeatedly the most vulnerable population will be brought back first…but what does that mean? At this point- your guess is as good as mine. Update: I’ve since I started writing this learned that this means he will be brought back in a small group of students, twice a week for 3 hours a day- which is great, but ultimately leaves me trying to figure out how to best teach my child (because I will be the one teaching) with a plethora of learning challenges for the other 15-20 hours the state requires of “learning time.” I’m not a teacher. I may have wanted to be one when I was 7 and my class consisted of Cabbage Patch dolls but it’s never been on my bucket list since. Yes, we’ve spent a lot of time making sure he’s had the best therapy and resources- but what we’ve done is not teaching. It takes a team to raise kids, it takes a team to educate kids- and i’m honestly fearful for what this year will look like for those of us whose kids don’t have the ability to engage and grasp concepts taught online for unfamiliar subjects, taught by unfamiliar teachers, in an online classroom of unknown peers. I’m hopeful that Gig harbor and its surrounding areas can manage to turn the dial so that ALL of our kids can return to in person school this year. But- until we do, let’s move forward with grace and understanding- for the kids, for the parents, for the staff. 

But as a special needs parent, I find myself asking- is this going to be enough? I’ve never been there on this journey. When your kid is diagnosed early like ours was, it literally feels like a swarm of people come out of the woodwork to help support you.  And eventually, those ones are replaced by more- and sometimes you end up finding your own support. To be honest the weight and the enormity of that thought is pretty f-ing paralyzing. Because who knows how this is all going to play out- who knows what level consistency is going to be able to exist. Who knows how much he’s actually going to retain from this year, how the Wifi in our house is going to hold up to 2 remote students and a more than full time work than home husband. 

But this is what I do know: 

I will work tirelessly to figure out how to make this work for him, 

and for our family. 

I will support the F outta our teachers. 

I will share my thoughts, feelings and concerns instead of just complaining. 

I will do my best…even though I already feel defeated.