I actually said the words “what else could go wrong??” 

The next thing I knew I was sitting in a Pediatric Urgent Care with a child screaming at the top of lungs about how his ears hurt and that the doctor was taking too long and needed to move very more quickly. 

That about sums up about January around here. 

In the midst of chaos- hospitals, surgeries,  unplanned bathroom renovations, starting a new business, last minute trips out of town for Ken, a small car accident,  and the general chaos of raising children- I found myself sinking- like the kind of sinking where you’re crying uncontrollably for no reason, or the smallest issue sends you into a fit of rage. It’s not that I’m a type A personality- because I’m not.  I’m a fairly private person (ironic, I realize since you’re reading this on the internet) and after a meltdown with one of my closest and best friends, she said something that reverberates with me even now, weeks later. “You need a sounding board.”  And damn, was she right. But I still sat on it, because vulnerability is NOT my strong suit. I like to help people. I like to be the one who has it all together. I’ll stand beside you in your biggest challenges and cheer you on until my voice is hoarse. I want to connect with you- so I can support you when the shit hits the fan. But when my shit hits the fan, I bury my head because I don’t want bother you. 

When Teacher K messaged me that Seton was complaining of ear pain, I told her to hold off for a bit because the kid is smart AF and there was a good chance he was using it as an avoidance tactic. Five minutes later she called me and said “Yeah, I think this legit.” And it was- the kid cried for the better part of 4 hours before we could get him seen by a doctor, and the only other thing he has that kind of stamina for is swimming and playing video games. It was the icing on the cake of the entire month- this kid rarely gets sick.  (Which is a bonus because he also refuses oral medicine because #autism and he calls it poison) And over the course of that four hours, he let EVERYONE within ear shot share in his pain. When he learned he had to get an antibiotic shot, he screamed louder, and when they were done with it, he declared “YOU INJECTED ME WITH POISON!!” When he had to get a second dose and the nurses walked into the room with the syringes, he exclaimed “TAKE YOUR POISON AND GET OUT HERE!”

And I laughed…but then I thought damn. This kid is trying to teach me something. Here he was, faced with a real physical pain and he was letting everyone know about it, and looking for comfort and help in every person who stood within an arms reach.

So what was I going to do with it?

I took some time that night and decided I was done sinking. It was time to swim. It was time to be honest with myself, and with those around me. I was going to let my vulnerability become my biggest strength, because hey, if he can do it so can I.

So I did.

And it, like the road less traveled has made all the difference.

10 Things I’ve Learned Since 2020 Started

1. Trust Your Gut.
2. Read number 1 again.
3. Showing weakness doesn’t make you weak.
4. We aren’t meant to go through this all alone.
5. MOD Pizza for dinner 3x in one week isn’t going to kill anyone.
6. I can’t actually survive on energy drinks and Diet Coke. #Hydration, it turns is out is key, with actual water.
7. Find what you drives you, what fuels your passion, and f-ing go after it.
8. Sometimes a night around a kitchen table with some of the coolest people you know can be all the recharge you need.
9. I’m really damn lucky.
10. I am stronger than I ever thought.

Here’s to adventures, more learning and growing in the rest of 2020.

And, if Seton has his way, a lot less “poison.”

See you in the pool- it’s time to swim.

When they give you the “autism” diagnosis they do a lot of things- one of which is recommend you call your insurance company right away and find out what your coverage is. One of the most frustrating things as a special needs parents is finding out that the gaps between your child’s needs and their coverage is sometimes substantial.

Lily is in Options (special education) with Seton, and her family needs our support so that Lily as the ability to enjoy the things she loves just like any other 5th grader. I know this time of year it’s easy to get caught up in the non stop hectic ness and holiday parties and champagne. I challenge you to give- even $5! You’ll forget the taste of that Starbucks drink by tomorrow, but Lily? That $5 is helping her see and experience the outdoors that she loves so much.

If you feel led…

Click here.

When you go hiking, or rafting or something like that you usually get a guide. Somebody who knows the ins and outs of your route, is trained in emergency response, things like that.

When your 18 month old is diagnosed with “global developmental delays” you get a guide too. Except he or she is called a Family Resource Coordinator. And besides the obvious things of making sure you’re on the right path, if you have a good one, she’ll answer random text messages, call you to just check in, listen to your rants, all while making sure you are as supported as you need to be.

From the first phone call, her voice was calming. She explained the process, not leaving out any details and making sure I understood what would happen. She checked in with via phone after the initial evaluation, and when the report was done, she called me to tell me he did in fact qualify for Early Intervention in every area. She wanted to make sure, before anything else that I was okay with the news. I wasn’t even thinking of myself at the time and here she, who had barely known me two weeks was worried about me? It was unlike anything I’d experienced up to that point. And she never stopped- if I had concerns about a service provider, she made sure it was addressed. My frustrations and concerns weren’t annoying to her- she treated them as if they were her own personal concerns and made sure they got addressed. When I broke down in a massive ugly cry at Hope Sparks’ Christmas party at the Tacoma Children’s Museum, she made sure we got an appointment with a developmental pediatrician a week later. And when the diagnosis came down, again, her first question was “How are YOU?”, followed by telling me how big “the spectrum” is and how lucky S is to have such dedicated parents.

She built such a confidence in me that with his 3rd birthday looming, I wasn’t sure that the predicted route of enrolling him into the district preschool was best. And I wasn’t afraid to say that, so we went through the evaluation process (she even came to the initial evaluation because Ken was working in Seattle and couldn’t get out!) but at the end it didn’t seem like the right decision to enroll him. And if I wasn’t sure how much she cared about our family and our kid until that time, when she stood in the parking lot with me and we had an admittedly somewhat heated conversation where we both cried. I walked away from it frustrated, but then realized all she wanted was what she thought was best for my kid. And she said it was ultimately my decision and I knew him best and she wasn’t wrong- but damn, here was somebody who wasn’t getting paid to answer my text messages at 930PM. She wasn’t gaining anything professionally to come to our private OT appointment….but she kept showing up.

We did ultimately enroll him in private preschool, and came back to the district for K. We didn’t cross paths with her much, but when we did, she always asked about him and how it was going, and it was never in the surfacey making conversation, she still cared about us and him and his wellbeing.

Michelle,

I never appropriately said thank you.

Thank you for always responding to my frantic messages and emails, for never making me feel like a crazy over protective parent, for making navigating this path and world way easier than it seemed. That day at the Tacoma Children’s Museum changed the direction of our lives- his mostly, but it all happened because of you. I didn’t even know what a developmental pediatrician was before you explained it to me. Thank you for recognizing the need in the special needs community for the kind of support you gave. You are a selfless, incredible person who gave hundreds of families a shoulder when they didn’t have one.

Thank you for believing in me when I didn’t know what to do, or where to go. Because of you, I’ve never shied away from tackling issues head on. Whether it’s with insurance companies, service providers- whatever. The confidence I carry with me in those situations is because you spent his early years telling me I knew him best, and I knew what was best to do for him.

Thank you for dedicating the last chapter of your life to kids like mine, to families like ours. Thanks for connecting me with people I wouldn’t know otherwise, thank you for never calling me a pain in the ass although I’m sure there were lots of times you felt like I was one. (I wouldn’t have been offended if you had called me one.)

Kristen told me last week at pick up, “He is THRIVING.” I’m not sure she knew the magnitude of that statement, but I got in the car and cried. He IS thriving, and it made me reflect on all the people who have gotten us to this point. And you- you were the first one on a long path. I couldn’t have imagined a better guide- and I will be eternally grateful for you, and your presence in our lives.

Thank you…from the very bottom of my heart.

Love you,

Emily

All it takes is a spark.

Sometimes that spark is a person who relentlessly believes in your kid as much, if not a little bit more than you do.

There’s a process- we all go through it. You sit in a doctor’s office and you get a diagnosis. And it’s kind of like The Matrix- depending on what color pill you choose, your path can look differently. We chose the blue pill.

The blue pill came with finding additional service providers, spending A LOT of time on the phone with the insurance company, and a LOT of miles on and time in our car.

But it came with A, who surely had become an OT after a stint at Disneyland being a princess and had the magnetic personality to match. She didn’t laugh at our incessant questions, or the fact that he came to therapy in pajamas ALL THE TIME, or the general lack of knowledge we had with our situation. But damn did they connect, and she became more like an older sister than a therapist. When she told me she was moving, I cried for ten days. Not an exaggeration.

It also came with another A, (ABA therapy) who had the most instant connection with him anyone has ever had to this day. The first day she was in our home, I knew there was something special, and she became a second mother to him. She never gave up, sometimes listening to him cry for 90 minutes over putting toys away. The only thing she had more of in her than love for him was the belief that he was capable of every task she put in front of him. She was here on Riley’s first day of kindergarten, when we got Gus- all the epic days in our lives for many years, she was right there with us. She moved too, and I still cry at the mention of her and recollection of what she provided for all of us. She raised the bar for him- for me, personally, and as a parent.

It’s also come with J- who has been seeing him since the first A left and was the first person to make us realize that he relates differently to men. And these two- exist to challenge each other, and do so regularly. What J has done and continued to do (besides love us unconditionally) can’t be measured. I mean when a kid takes your scissors and puts them away because he refuses to cut in therapy, and says “OH SHIT” when he drops legos and your daughter repeats after him and you still love him- that’s next level.

And another J- (I’m just now realizing we have a lot of therapists with the same first letter names LOL!) We honestly chose her out of convenience. I didn’t want to drive thirty minutes round trip for speech if I didn’t have to, and she was literally 4 minutes away from our house. It took awhile- but she has been the biggest progress facilitator for him with speech. She taught him how to lose- and besides being one of our favorite people in the whole world, she might be the only adult besides me who is more stubborn than he is.

We spent so much time immersed in the private therapy sector that it was terrifying to make the leap into public. school. We were shifting completely away from me being at the center of all of the therapeutic efforts and knowing exactly what was going on, to him being gone 6-7 hours a day.

A few years went by that made me second guess our decision. Spoiler alert: private schools for ASD kids are EXPENSIVE. So we stuck it out. And then K came along. And K…she is what should be in every SPED class in America. Scratch that…worldwide.

She’s energetic- passionate, honest and truly believes that we are all in this together. There’s an overwhelming feeling with school district workers that its a different realm than the private therapy realm, and while application and techniques may be different- if everybody’s focus is what’s best and most functional for the kid, shouldn’t that override any territorial feelings? (Rant over!)

K has sought to get to know him on a personal level- because she recognizes evaluations and IEP progress reports only show so much. She spent 40 minutes on the phone with me figuring out how to best motivate him to address his attention issues. She has gotten the entire teaching team on board with his behavior and attention tracking. And even at the end of this worst day- she’s STILL smiling at pick up.

If I could- I’d write a letter to the Emily who sat in a quiet doctors office on Dec 10, 2014 when a doctor told us “autism”. I could say a lot of things- but the biggest three things I wish somebody had told me on that day?

Be Patient.

He will get there- it won’t be on your time.

The right people will come into your lives- but not when you expect them.

And besides that- all it takes is one. And you’re going to get more than one, promise.

Wait.

One more thing.

Get some sleep. Because his sleep issues aren’t going to get better for a few more years.

It’s taken a couple of weeks for me to be able to put this into words-

thank you.

For supporting our family.

For loving our kids.

For believing in me- in us.

For accepting and loving- unconditionally.

I’m waiting for the approval paperwork come in the mail…

and then the fun begins.

#AhoyBlueSailor

When we got the call that Dave had passed, we began planning our trip to say goodbye immediately. It was the first time our kids had been to a memorial, and I wrestled with how much or how little to explain to them. Seton had already been diagnosed with autism, and Riley was a just turned six year old Kindergartner who was excited about getting to travel by airplane, and confused about meeting a bunch of family she never knew existed. The thing about this family that I married into and have since added two children to- it doesn’t matter if you knew they existed or not, as soon as you set foot in a room, there’s enough love to carry you through to the next several decades of your life. 

And so it was- we spent 4 days in Wisconsin, saying goodbye to Dave, surrounded by family, bathing in so much love you almost forgot that sadness was the reason we had been brought together.

Fast forward several years later, and the same family members found ourselves together for a wedding- and then another wedding later that same summer. It was always the same story- haven’t seen you in years, but it always feels like you’ve never missed a day. I thought it was  an anomaly held just for the family- turns out I couldn’t have been more wrong.

When Alex proposed to Gabi, we all had a feeling we’d be headed to Greece- it was just a matter of when and where. It wasn’t a question as to whether or not we were going- I told Ken it was non negotiable. Family shows up, and we were going to show up for Gabi no matter where we had to go. So we did- and what transpired over 7 days in Greece was something I’ve spent a large portion of the last month of my life trying to put into words that could somewhat adequately convey the love and togetherness that we all experienced. This social media era that we live in made me feel like I’d just not officially met Alex and Gabi’s friends- despite the fact that they hailed from literally all over the globe. I’m a social person- the worst year of my life was the only year I lived alone, so throwing ourselves into talking with all of these friends was one of the best things about the trip. It wasn’t even casual, surfacy conversations- it was deep shit! We talked about where everyone was in their lives, what they dreamed of doing…we talked about Dave. Most of them had never had the opportunity to meet Dave, but here they were doing just what Dave had always done for Gabi and Karen and everyone else in their lives: show up and give all the love you can.

So we did- we gathered on the beach during the day, sharing gyros and drinks, and at night, we celebrated the incredible love that Gabi and Alex had found, while floating on this insane love cloud we were all on. 

The night of the wedding was, no exaggeration one of the best nights of my life. We cried, we danced, we hugged, we laughed, we toasted to an undeniable once in a lifetime love that Alex and Gabi had found, we toasted to family, existing and new, we cheers-ed with Ouzo and Aperol Spritz…so many Aperol Spritz. 

Have you ever had shin splints from dancing at a wedding? That is the level of epic-ness we were dealing with at this wedding. 

I spent days trying to figure out why it felt the way it had the whole time we were in Greece. The bridal party and all of their friends who traveled consisted of some of the most incredible human beings I’ve ever met- their day jobs are all impressive and sound like you’re rattling off an alumni “who’s who” list from a prestigious university, but what the coolest and best part about them all was they were freaking radical and amazing and GOOD humans. And they were LOVE. Sometimes in a group of people that large, you’ll have drama or behind the back gossip- not a freaking ounce of it. When I met Gabi the first time, she had just turned 21 and was this beaming pillar of light and happiness- when I met Alex for the first time, Dave had just died and he did anything and everything he could for all of us in those days. I realized that these were two of the best people I’ve ever known, and in turn- they had assembled on this island in Greece, some of the best people in the entire world. Good attracts good- it was happening right in front of my eyes. And the whole thing was just full of so much love- the same love Alex and Gabi had, the love of each family, the love these friends all clearly have for each other- it was awe inspiring, and dare I say life changing. 

When we boarded a plane to leave Greece, I found myself lost in thought. It felt familiar- the love tunnel we had just been walking through. Then it hit me. 

Seton was diagnosed with autism just two and a half months after his second birthday. We have blazed somewhat of our own path as we’ve traveled this road, and been through different therapists, some who left because they moved, some who we moved on from because it wasn’t a great fit. But the common thread sewn in all of them? Love- a love and passion for their chosen career, which they weren’t in for the money but because they wanted to see the kids they served succeed. And it’s never been just about the career- these therapists invest their time, money, and hearts into seeing our kids succeed. It’s all about love. And the choices we’ve made, the detours we’ve taken, but most of all the love that the people we’ve surrounded him with- have made all the difference in his life.

For the past several months I’ve had the overwhelming feeling that I need to use the knowledge, the experience, and the passion i have for helping families of special needs kiddos in our area to good use. I wasn’t sure what that looked like, but I started doing research. I landed on a non profit to support these families. And just like that, Ahoy Blue Sailor (the nonprofit at least- this blog has been around since 2014) was born. 

While the paperwork and legal “stuff” is still being processed, this is what I can tell you: as a family who had a young child that was diagnosed early on in his life with autism in Gig Harbor, our area is severely under-supported. For 2 years we drove to Tacoma for speech twice a week- and not just over the bridge, we were going 30 minutes into Tacoma which meant 2 hours a week just spent driving. We’ve driven 3 hours round trip to get Riley to a SibShops workshop in Renton after some super inquisitive conversations led to her wanting to be around more people who got it. I hate the lack of opportunities for families in our area to be around more young families who get “it”. So, Ahoy Blue Sailor is going to work to change all of that. 

No, we won’t exist in a physical location, (at least not yet) and yes, I may have lost my mind taking on another thing in my life that’s going to require my time and effort. I joked with a friend that I was really lacking something to fill the 430 AM-6 AM time slot in my life, so this was it. I’ve got a few things that I’ve brainstormed and are in the works, but stay tuned for more information. 

Why this? And why now? 

Seton was 18 months when I made a phone call to Early Intervention and requested an evaluation. Everyone around me declared him to be “fine” and questioned why i was worried. When the evaluation was completed, he qualified in every category possible- EVERY developmental area to receive services. I wasn’t sure what to do, so we did what they told us to. We knew he needed speech and OT, Early Intervention provided the speech and we found private OT services. “Development delay” and “Sensory dysfunction” were phrases that got thrown around a lot. I was optimistic, but six months later we were in a developmental pediatrician’s office being told our son met the diagnostic criteria for autism. As the years have passed and I’ve grown and I’ve learned more about myself and about Seton and about autism in general- I’ve always wished I had could have done more four years ago. I wish I knew more earlier. I wish when we opted out of the district preschool more than just our ABA therapist was telling us that was our decision to make and it was okay. I wish I could put him in sports without having to fill out the “additional information” section on the registration form. I wish I didn’t have to explain “he has autism” to random people at the park. And maybe I don’t- maybe that’s more about me and my unresolved shit than anything else. But here’s what I do know- if there had been something in existence that was ready to walk alongside us and help us navigate this path near our town when we sat in that doctor’s office and learned that raising our son was about to take a left turn, it would have changed a lot of things- for me and for him. 

So that’s it- Ahoy Blue Sailor which started out as a blog (and technically still is until we get the formal approval paperwork) is changing. BUT- there will still be blog posts. Writing has always been one of my therapy releases and I’ve vowed to go back to that this year. There are many things on my list- and coming down the pipeline. So stay tuned. Thank you to the people I’ve bounced this off of in the last few months- for listening to my ramblings and and pushing me to stop talking about it and just do it. Thank you to Ken, who is the best partner I could imagine on this journey. Thank you to the Trio, who continue to change me and challenge me to be better, all the while supporting me endlessly. Thank you to Dale, who made me speak this into fruition over a lunch of tacos and Cokes. Thank you to Alex and Gabi, for bringing together an incredible group of people who inspired me to finally pull the trigger and make this more than just an idea. Thank you to Karen- for inspiring us all to keep going, no matter what life throws at us and to do it with all the love and best intentions in your heart. Thank you to Uncle Dave- who stormed into Doug and Sally’s house at Christmas and said “gimme that baby” and so I handed over my 8 week old, because that’s who Uncle Dave was. 

And thank you to Seton- when you were 2 weeks old, our doctor told us you were a “4th trimester baby”. When you were six months old, she told us you just really loved your Momma. I think we’re now in the 25th trimester and you do still love your Momma, so she wasn’t wrong about either of those things. Nobody has ever challenged me like you do, but nobody in my life has ever loved me like you do either. Thanks for choosing us, thank you for being you no matter the cost, and most of all thank you for being the source of inspiration of Ahoy Blue Sailor. I love you buddy, maybe more than you love Sprite and French Fries.

Oh- and the name? Well- you just have to wait to find out where that came from.

I noticed it yesterday as I flipped through some pictures on my phone. I’m picture obsessed, there’s something about capturing the moments and freezing them in time. A picture brings me back to the moment, the smells, the smiles, the emotions. I take probably 30 pictures a day. When I look back at pictures from the early days of his life, I searched for when we lost him. It has to be there right? I can’t have lost my kid to a pool of autism and not known could I?

A glance through the first years of his life pictures confirm my deepest fears. He wasn’t there and we didn’t know it. But instead of dwelling on the past, there was a picture yesterday that took my breath away when I looked at. Not only was he looking fully at me, but he was showing me his lego creation he’d made before we left the house. “Sailboat! Wego sailboat!” I wrestle so often with if we are pushing him too much. His schedule includes therapy 5 days a week. It doesn’t allow for many random trips to the park. It doesn’t allow him too much downtime. But you know what? It’s working. When you say hello to him, he says it back. When he wants or needs something, he can use his words to express that. And it’s been a lot of miles on the car, a lot of sitting in waiting rooms, but it’s working. I am the biggest believer in early intervention and advocating for your child. Because I’ve seen firsthand what it can do for a kid. What it has done for ours is amazing.

It’s quite isolating.

We preach togetherness, and inclusion, when this whole experience is the complete opposite.

Excluded. The questions, the stares. They come from everywhere now. Even other kids.

“Do you talk?”

I still struggle with how to answer that. Do I make excuses? Do I start a conversation that child’s parents aren’t ready to have with them yet?

What he’s shown me is it doesn’t always matter if he talks. His play speaks beyond any words that he can or can’t say. I struggle to remember that and at times I forget that his autism isn’t just his.

It’s all of ours. Even the dog’s. We are all in this together.

And no matter how far away I feel from the rest of the world, I know my feet have a safe place to land with my people.

 

I paused today as I left his preschool.

Other kids, wholly engaged, answering the questions and watching the teacher’s every move.

Him sitting at the end staring off at something only he knows exists.

It shatters my heart into ten million pieces on the floor to see. The self doubt begins to creep in. “Are we doing the right thing? What if he needs to be in the special needs program? Why can’t he just pay attention?”

Then he catches my eyes and smiles. Not with his mouth, but with his eyes.

I know he knows me, I know he sees me. I know he gets that I am his partner on this journey. That I’m his guide.  But there’s so much more out there beyond me I want him to see. The trees. The birds. The friends. The experiences.

What if he doesn’t see them? Will he ever?

He sees Thomas. And Percy and James. And his kindle. and the iPad.

I look, and I see potential. He’s fucking brilliant.

I love every ounce of him. I love what he’s teaching us on this journey.

Some days I wish it didn’t break my heart every step of the way though.

I’m not by nature a very open person. It takes awhile for me to get to a comfortable point with other people, where I feel like I can lay it all out on the table. In 2008 I finally took the plunge and realized the internal conflicts I was constantly battling from day to day could be conquered with medication. And then a whole new world opened up- one where I could focus and keep thoughts straight, and the daily battles never felt as though they needed to fought anymore. They just went away.

Sometimes I wonder what he feels like- when the world becomes too much for him and the daily battles just can’t be fought, where does he find the solace? How does he move on? He’s learned and developed self coping skills, but there are times where the world is no match even for those skills. Does he feel like I did? Overwhelmed by life and ready to just lay down and cry until the feelings go away? There’s so much we are still learning about him- and so much that fascinates me and I wish I could crawl inside his head and figure out. But I can’t, so I’m left here wondering.