The following was written by Seton’s big sister for her freshman English honors class.

As we sat on the floor of Ayla’s bedroom wearing our last day of second grade t-shirts, crowns, sashes, and whatever else our parents could find on Amazon,  Ayla’s little sister barged in demanding to play with the four of us. As Ayla pushed her out of the room and shut the door everyone began to share stories about their younger siblings,  I kept silent. I couldn’t relate to anything they were saying. If I said something none of them would relate or understand. On October 12th, 2011 my younger brother, Seton was born. I loved him, I was so excited to be a big sister and play with him, but as Seton grew he struggled. At age two he still hardly spoke at all. Once six months had passed by with no advancement my parents decided to take him to the doctor and that’s where he was diagnosed with Autism Spectrum Disorder.

     Although my parents tried to explain why Seton was different from other kids, I didn’t understand. Seton was still the same brother I loved and wanted to spend all my time with. The first time I remember my parents explaining Autism to me and actually understanding was when I was six or seven. However, my brother running around the house with a ball and having a babysitter while my mom took Seton to, speech therapy, occupational therapy and more was completely normal in my mind. I was used to the loud, echoing sound of his bright red ball bouncing throughout the house. I could understand his “words” that anyone outside of my family could not understand.

In my fourth grade in my class my teacher, Mrs. Jackson, started a class discussion about our siblings which I did not enjoy even hearing others funny stories about their siblings. So, again, I stayed quiet- just like I had at Ayla’s house. Until I was called on by my teacher and then the words flew out of my mouth in an attempt to not seem like I had a weird brother, I shouted “My brother’s autistic!”. The whole class just stared at me like I was an alien who just waltzed into class and sat down next to them. “Can you explain what that means, Riley?” Mrs. Jackson asked with a big smile on her face revealing her perfectly white teeth. “Um, it means he learns differently than other people and his brain works differently.” I could feel my cheeks getting red. I just stared at the multiplication table poster on the wall, trying to avoid eye contact with any of my classmates. “Thank you, Riley ”, my teacher said so softly compared to her usual, projecting voice.

    About halfway through my fourth grade year we began learning about different types of essays and then were asked to write an example. The first one was a persuasive essay, the topic was if students with low grades should be allowed to play sports. One reason I said they should be allowed to was because it would be harder for students with learning disabilities which I felt very strongly about because of my brother. Class discussions were also a part of this lesson and once again I felt singled out. I was called on to share my opinion and I mentioned one of the reasons being kids with disabilities may have a harder time getting good grades. When I tried to start my next sentence I was interrupted by someone across the room saying “Riley has a brother who has a learning disability so she knows a lot about it. That’s a good argument, Riley”. My face turned  pink just like it had earlier in the year. Although I sat in the back of the class every student in the class had turned around to look at me. I love my brother and he wasn’t trying to make me feel this way but at moments like this I couldn’t help but wish he was just “normal”. I hated myself for thinking that but at the same time the feeling of being singled out was so horrible with everyone looking at me.

As I got older I felt more and more worried about being judged for what I said about Seton and if he would be made fun of by other kids. At the same time I didn’t have anyone I could talk to about how I was feeling. None of my friends had autistic siblings and neither of my parents knew what it was like and I felt alone. Until I did talk to my mom. She instantly researched books written from the perspective of kids with disabled siblings and found a group for me to try an hour away. The group wasn’t helpful but the books and knowing I actually could talk to my mom changed how I felt entirely.

Through talking about how I felt I learned to not care as much. It wouldn’t be the end of the world if someone thought I was weird for my brother because I knew how amazing he was. Now, in ninth grade, I like to go to Unified Club and make sure everyone can be included in after-school activities. I tell as many people as I can to join the club and I love discussing how kids with disabilities are being included more with my mom even though I am not allowed in the room where these meetings happen. Once my whole family began talking about Seton more, all of us got support we didn’t know we needed. For instance now my mom is involved in communities within the Peninsula School District to promote more kids getting chances to do more activities.

Though I still worry about Seton being made fun of, I’ve realized that he’s going to be okay. Seton is the funniest person I know and he has the quickest multiplication and division skills I have ever seen. Seton is one of my favorite people in the whole world and he has taught me to never judge someone based on what you can physically see.

It occurred to me recently that there was a time when April 2nd was just…April 2nd. 

I mean I knew about autism awareness day or whatever we’re calling it now or may have called it then, but it was just another day. It’s not even that it’s more than just a day now, but it’s the fact that the universe seems to stop for a second and focus on something that’s a part of our lives on the daily. Something about that makes it feel bigger, makes it feel like an occasion to be marked. I’ve been thinking for a few weeks about what to write, what to say about April 2 this year. I thought about all of the things that have changed for him over the last year, I thought about how it’s becoming increasingly hard to capture the magic that this kid is in words. I thought about how having the front row seat to watch him navigate life is one of my favorite things in this world. I thought about how being his person is an incredible honor. I thought about how he’s changed all of us for the better. I thought about how being his mom, more than anything else in my life, has taught me who I am as a person. I thought about myself in 2013 on April 2nd, before autism took a seat at our family table. I thought about who I was then, and what I would tell that version of me.

 I think it’d go something like this. 

Dear Emily, 

In eight months you’re going to have a giant meltdown at a Christmas party. What will transpire over the next two weeks following that meltdown will change the trajectory of your entire family’s lives for, well the rest of your lives. 

Your heart has been right all along. There’s nothing wrong with him, but he’s going to need some help and support and more love than you think you’re capable of giving him, but I promise you’re up to the challenge. The diagnosis itself won’t surprise you because the signs are all there and you probably have known this all along. You’re going to spend a lot of time filling out tons of different evaluations for him, learn lots of new words like proprioceptive and what the heck is a CVC word although to be honest that one will take you longer than you care to admit. Pretty soon there will be people in the house all the time, but they’re there because you’re doing the best for him. Therapy is going to become essentially a full time job and you’re going to question whether you’re doing the right thing for him but I can assure you that you are, without a doubt. You’ll spend time in and out of hospitals looking for a variety of medical things like staring spells and eosinophilic esophagitis. You’ll continue to approach all of this like you always have things in your life: with kindness and empathy, and looking for solutions. Love the people who are coming into your life- these therapists? They will love the shit out of him. It doesn’t matter how much he screams in their faces, tells them no or refuses to do the task they’re asking of him in the manner they’re asking of him. They will love your kid like he’s their own. And you’re going to get super attached and a little bit traumatized when they move away, but I promise he gets better at making these kinds of transitions as he continues to get older. (And you will still get to keep them in your life, too) Don’t be afraid to ask them questions, trust their judgment, and learn from their experiences. His sleep will never be good, but it gets better. You will learn to survive on a combination of caffeine and humor. I mean it’s hard to get mad at a little dude who loves his momma an extra amount, right? You will learn to follow your heart. School, friends, nutrition, doctors- eventually they’re going to start to understand him. And The school thing…it works out. Kinda beautifully. But it’s hard, and you’ll cry in IEP meetings and sometimes you’re not sure if it’s really the right thing but I promise you, it always is. 

Don’t get so caught up in the therapy and the questions of whether you’re doing the right thing that you start to lose sight of this beautiful kid. His sense of humor will make you laugh so hard you cry on a regular basis. He’s got plenty of thoughts and opinions and eventually he will not shy away from sharing them with, well everyone. 

He’s going to be okay- no, he’s going to be more thank okay. You will build this network of people around him who love him for who he is, and eventually he learns to trust and let them in. 

It’s hard right now- but some day, he’s going to insist on going to the classroom next door to say happy birthday to his friend, he’s going to drop an exceptionally well placed f bomb in the middle of the special ed classroom, he’s going to fall in love with the bar down the street from your house, you’re going to make it through and IEP meeting without tears, and the conversation is going to shift from teaching him how to fit into the world to how to make the world work for him. 

This is going to be hard, you’re going to struggle. There’s not a lot of services around here, and that problem doesn’t get fixed any time soon. But you’re strong, and you’ll keep going and this darling boy who feels like a huge puzzle to you right now is going to look at you with his giant brown eyes one day and tell you to PLEASE STOP TALKING I AM ONLY ASKING YOU ONE DAMN QUESTION and then you’ll laugh so hard it hurts but also wonder how the heck you got to this point? 

It’s a lot of work, but this family? We’re bulletproof, you’ll learn. We love bigger than anybody, actually we do everything big. 

He’s eleven now. Smart as hell. Complicated. A homebody, loves his routine. He’s got an emotional support water bottle. (Not kidding) The only two swear words he uses only a regular basis are damn and f- and we’re calling that an improvement. He loves football. Yesterday I walked into the room and he was watching Hard Knocks on NFL Network. Today we were watching pickle ball and he was not impressed. He’s really bad with names, but loves hanging with familiar friends. Last week he hung out with a seven month old baby and loved him- and the feeling was mutual. He eats about 20 cups of rice a week, I think. We finally got him to take ADHD meds and that has been one of the best things that has happened to him. Today we celebrated Fake Easter because Ken and Riley are going to be gone next week and all he wanted was an AppleTV and he’s been on cloud nine ever since. He eats more apples in a week than most people do in their entire lives, I think. Some time over the last year the conversation has changed from how to make him fit in to school or social situations and instead we’re meeting him where he’s at and making curriculum or situations work for him, and holy shit that’s the best thing ever. He still loves the Float and we still go every Friday. He’s the luckiest dude in the world because those big brown eyes have been drawing people in his entire life and to know Seton is to love him. 

So chin up, Emily. This is the beginning of an incredible adventure, and I promise you’re ready for it. 

Love, 

Emily 

So happy April 2nd. 

Here’s to a world that works to accommodate people with special needs, rather than making them feel less than. 

Here’s to a world where kids are supported and not segregated. 

Here’s to a world where people aren’t mad, they’re advocating. 

And here’s to this little boy who has changed our stars, and I’m thankful for that everyday, not just on April 2nd. 

This week somebody told me we should start having the conversation with him about what autism is and I’m not going to lie, I almost cried on the spot and I’m not even sure why. I knew we’d get here eventually but that topic itself feels…huge. Monumental. Like a giant turning point in the road that I wasn’t sure we were ready to take yet.

I did what most sane people do in these kinds of situations, I googled it. (Not even kidding) As I read the google search results I found out that some people don’t ever tell their kids they’re autistic and I’m sorry what?!!? That was never on the table as an option. However, it did make me realize that we’re in a situation where yes, he is autistic but he also has the capability to process that information and understand what that means. But what do I even begin to say?? I asked our friend who told me it was probably time to start thinking about talking about it if I could just show him the Sesame Street clip from a few years ago where they introduced a muppet named Julia who is autistic. Surely if anyone, anything could explain this better than me it was Elmo and Big Bird.

But what do you even begin to say to a kid who has lived his entire life with a diagnosis that he doesn’t yet know he has? Words are kind of my thing and all I could think of to say was “your brain works differently” and “it’s like a superpower”, and those cliches make me roll my eyes in all kinds of ways. 

If i had to put it into words for him, it’d probably sound something like this: 

I mean…yes, autism means that your brain works differently. 

But for you it means that you figured out how to unlock an iPad before you turned one. It means you didn’t sleep through the night for the first 3-4 years of your life. It means that you could count to 100 before you knew your name, that one of your first words with x-ray. It means that you can finish a math quiz by yourself and answer 95% of it in your head by just looking at the questions. It means you have no problem making your thoughts and opinions known on so many topics. It means you hate pants. It means you’re hard to get to know because you have to make sure that people are worth you getting to know. (A fact that has driven many therapists crazy when they first met you) It means you hate squishy and slippery things, no matter if it’s touching or eating them. It means you love Trick or Treating but hate the candy. It means we own about a dozen playground balls that you bounce around the house constantly because it’s one of your favorite ways to self regulate. It means we had mid sized trampoline in our house for years for the same reason. It means when you decide you want to do something with the rest of the family we tend to drop everything and do it because you don’t ask often. It means you see opportunities, you notice the little things, you love predictability. It means that when your giant brown eyes connect with mine my heart melts into a giant puddle because for so many years it felt like you were looking right through me. It means your sense of humor is impeccable and you have a hard time remembering people’s names. It means when you find your people, you hold hard to them. It means when you fall in love with something, whether it’s a video game or the restaurant down the street we go all in because now we have common ground and those can be hard to find sometimes. 

For me, it has meant spending your entire life trying to make the world better prepared for you and your awesomeness. It has meant my life has been made exponentially better because of the things I’ve learned, the people we’ve met, the ways you’ve forced me to see the world in a different lens. It means I can tell you the night that you first told me you loved me at bedtime. It means I won’t ever stop trying to convince you that the sky’s the limit and you CAN do hard things. 

Turns out that maybe I don’t need Elmo and Big Bird after all.

I recognized the hand grip as you were walking up with your son. 

The matching Spiderman suits were another giveaway. 

“Hey guys, Happy Halloween!” 

“He’s nonverbal, I’m sorry. We’re working on it.” 

Somehow my heart sank and I was filled with hope and admiration for you at the same time. 

I remember the first few Halloween experiences. He wouldn’t wear a costume, so we’d opt for pajamas that served just fine. He didn’t say anything when he walked up to each house but he was enamored with the process, and I get it. It’s a weird tradition when you think about it. “Don’t take candy from strangers” except on this weird holiday where people are all dressed up in random costumes that may or may not make sense. In which case take all the candy and make sure you say thank you or else they’ll think you’re rude. 

It’s easy to throw in the towel on holidays when you have a special needs child. You make excuses that they don’t care or it’s too hard or some other reason you come up with and you just don’t go, and that’s okay because you gotta make the call that’s best and sometimes that is what’s best. 

But Spiderman and his Spiderdad didn’t throw in the towels on Monday. They were walking through the neighborhood and Dad was apologetic each time he walked up to a house explaining why his mini-me wasn’t obliging and saying “trick or treat” or thank you. And damn my heart broke into a million pieces for him, because he didn’t need to apologize that his son wasn’t following the expectation of what “should” happen during Trick or Treat. I hate that we’ve created a world where if you aren’t following the normal procedures of activities, you’re wrong. There’s no room for someone to be able to celebrate the fact that mini Spidey was out doing the damn thing. He was Trick or Treating. He was participating and I have no doubt that fact was something for his family to celebrate and feel proud of, and instead his dad spent his time apologizing for the lack of words from his son. 

Sometimes those little victories are the biggest ones. 

It’s why I call them big little victories. 

From the outside looking in, getting a kid to go Trick or Treating doesn’t seem like a big deal. 

From the inside- there’s so much that goes into getting a special needs child to partake in something like that. What costume are they going to wear? How is the costume going to feel on their skin? What’s the weather going to be like? Are they going to try to go inside of every house? Are people going to judge them for not saying thank you? 

I wish there was more grace and more understanding of the fact that everybody’s on a different path. I wish there was less black and white and more acknowledgement of the array of gray that exists in the world. I wish we could make the box bigger so more kids fit into it instead of making parents feel like they need to apologize when their kid doesn’t. I wish Spider-Man and his dad knew how much I admired them on Monday night. I don’t know what his future looks like, but I know that he’s on the right path. I know his dad loves him endlessly and will continue to do the best thing for him.

When his dad apologized to us for the lack of words when I gave him candy, I said “hey don’t apologize. You’re doing the right thing. Keep going.” 

I hope he knows I meant it. 

I hope he knows I’m going to keep fighting for his Spider-Man. 

And for my Sunflower. (For the record, it’s from Plants vs Zombies. He’s not a botany fan, just a gaming nerd.)

Eleven. 

He started off his morning as an eleven year old just like he has most mornings for the last several years. Snuggled up on the couch, streaming YouTube videos and asking me if I could even believe what I was seeing. 

His birthdays have always made me reflective. 

Eleven sounds old. 

It sounds like we’re headed to the back half of childhood.

Birthdays. They’re benchmarks, right? 

Right after he turned two, the autism diagnosis came. 

When he turned five, the fact that autism had officially been a part of our lives for the majority of it felt big to me. It was like there was a dividing line, the before and the after- when in reality it had been there all along. 

When he turned seven, he really started to let us in. The personality came out and we kept falling in love with him even more. 

Nine was when we figured out he was an epic trash talker. Although the debate is still on whether that skill is nature or nurture. 😉 

But eleven? 

At eleven, autism has taken a backseat. It’s no longer riding shot gun. It’s there, don’t get me wrong. But it’s not at the forefront anymore. When you get a diagnosis at two- your life centers around it. There are constant therapies, interventions, and doctors appointments. There are eggshells to tiptoe around because everyone is still figuring this all out. But now, at eleven- he goes everywhere with us. He asks for dinner places he loves. He gathers everybody in the family room to play a game he wants us to do with him. He texts in the family group chat. He can order his food at the Float. He’ll usually respond when the staff persons open the car door at the curb at school and says good morning or asks how he is doing. He loves a good pun, and has no problem telling somebody to get their shit together. He calls us Emily and Ken, which is hilarious. He has no patience for Riley and her tendency to sleep in, or her lack of video game skills but loves her and the parade of friends she brings around endlessly. He took a huge leap at school this year and has been blowing it out of the water. He loves HGTV (Good Bones and Renovation Island are his favorites) and NFL Network.  

But mostly, when I think about eleven? 

I will think about the fact that this was the year that the world finally caught up to him, stopped expecting him to fit in their box and instead made room for him.  

And if you can’t make room for a kid who says things like-

“YOU KNOW WHAT IS BETTER THAN CHAOS…..INFINITE CHAOS!!” 

Or in the middle of a PHS football game-

“KEN A QUESTION, DO YOU HATE CATS?” 

Then what the heck are we even doing?? 

Happy Birthday to the little dude who came along and changed our stars, who loves memes, his Hydroflask, cheering for touchdowns with me, shopping on Amazon, eating at the Float and Dexter’s (#IYKYK)and making people laugh. Thanks for changing my perspective on life, love, and showing us all how to live life being unapologetically yourself at all times.

Cheers to eleven. 

Maybe twelve is when you’ll eat your birthday cake? 

Eh, probably not. 

Yesterday I had to go to Costco. 

We were out of apples and animal cookies. 

Food has always been a thing for us…a complicated thing. 

But apples and animal cookies are necessities. 

We’ve spent most of his life either feeding him before we go out to eat somewhere or searching menus before deciding on a place to eat. Is there rice available? Chicken? Is the pizza dough dairy free? Do the friends have offensive seasonings? 

The first place we’ve all been able to consistently agree on is The Float. 

The Float is- well, it’s a little like Cheers. You can hardly go in there without running into friends. It’s got chill vibes, incredible sports memorabilia all over the place, a dozen tvs, and a really good breakfast. There’s live music on the weekends and karaoke. All of that to say, Seton isn’t really the target market. But he is probably the Float’s biggest fan. 

Early last spring we were sitting around a table at the Float, and when the waitress came over to take our orders- he ordered his own food. 

He’d never done that before. 

I teared up, because little victories. 

A few days before that, in a morning meeting at school the question of the day was what is your favorite restaurant. 

His answer? 

The Float. 

Fridays used to be Pizza Day. (A cheese pizza, hold the cheese because #dairyfree) Shortly after the Float became his favorite restaurant, Fridays became known as Float Day in our house. He orders the same thing every time. (Ken and I tend to order a few different things.) One Friday when he met Pat (who owns the Float) he was equally impressed and excited and then he smiled the entire rest of the night. Friends will text me and ask what time we’re headed to the Float because they know we’ll be there and want to join. One week a group of friends pulled in and one of them said “Emily’s here” when they saw my car in the parking lot. 

I don’t know why he loves it, but he LOVES it. It’s usually crowded, sometimes noisy, and you can’t get lunch until 1:30 on the weekends- a fact that he has committed to memory. One week the waitress asked if he was going to switch it up and he scoffed before he loudly declared NO. He likes to pick the table, he has on more than one occasion let us know that the sprite syrup needed changed. I think one of his favorite things about the Float is he can be himself. He can be loud and nobody cares. He knows how it’s going to look, how it’s going to sound. He can order the same food and drink and it’s going to be the same. It feels safe. It feels welcoming and inviting. And don’t we all want to be somewhere like that? I mean the chicken strips are just a bonus. 

So that’s the origin story of Float Friday. 

Pat, if you had apples and animal cookies I’m not sure we’d ever leave.

In seven days, he turns eleven. 

And he’s been counting down the days til his birthday for awhile. He loves them. He hates cake, but loves birthdays. It’s one of my favorite things about him- he’s always got to have a birthday cake. He never touches it. He will take a picture with it, but he’s never eaten it. Even on his first birthday- he stuck his hand in icing and immediately started screaming. (I probably should have seen some sensory issues coming at that point.) 

When he was little we did the whole “invite the entire class” thing. And they’d show up and they loved him and weren’t offended when he didn’t really engage in play with them but it was always fine and I think he felt celebrated and it was fun. 

As he’s gotten older we’ve backed off the big parties. To be honest- I’m not sure how much of those were for him and how much was what we felt like we had to do- an attempt to create some level of normalcy or trying to prove to myself that he wasn’t really that different,or  that despite the differences birthdays were going to bridge the gap.  And I think it worked, for a while- and so I continued to plan these parties and make favor bags and all of that. But this is a kid whose ultimate happy place is the wave pool at Great Wolf Lodge or at home with access to all of his “Stuff” and where he can get apples without having to ask someone and he just can just…be. No expectations, no forced social situations where he may or may not know how to respond or how to react.

Last night I asked him if there was anybody he wanted to invite to celebrate his birthday with us at home. 

“I’M REALLY NOT SURE.” 

I asked more questions until I finally got told I was asking “TOO MANY QUESTIONS PLEASE GO AWAY.” 

I want my kids to be loved, I want them to feel safe and secure. I want them to know that I would do anything for them. I want them to have a room full of friends on their birthdays and a crowded photo that you can’t hardly fit all of the friends into. I want them to look back and fondly remember their birthdays- the core memory type of thing. 

But that’s what I want. 

He wants to chill. He wants to play his video games. 

Probably check out some YouTube videos. He definitely wants Kinza. 

Parenting is a crazy journey.

Autism parenting is this additionally crazy journey where you never really know when to let go and when to keep holding on. For so long it was easier to assume he’d go along with whatever we planned or wanted to do. But now- all of that work we’ve done, the hours of work with therapists to teach him how to communicate, how to be a kid, how to work in classrooms- has brought us to a point where he’s got no problem telling us no. He will suggest a dinner location. He knows what he wants, and he has the ability to communicate that- which is one of our greatest accomplishments. 

In seven days he turns eleven. 

And it might look different than other eleven year olds. 

In seven days when he turns eleven, I’ll be reminding myself of this: 

Different, not less.