Last year on my birthday I made the very personal decision to “come out” about the presence of autism in our family. Up to that point we shared the information with our family and close friends. But we still kept the diagnosis pretty close to our hip. Everything was still so new to us. We were unsteady in our journey and trying to find our footing. There were still days that left us in tears filled with worry that we were getting it all wrong. Unsure how we would even be able to tell if we were “getting it right”. Improvements and changes were so hard for us to measure. Some days if felt “better”. But better than what? Other days is felt worse. Harder. Hopeless.

Keeping the circle small in the beginning is how we survived. I remember driving home from our diagnosis. We drove the first hour of the journey home from Iowa in complete silence. I took my phone out and began drafting the most difficult message I have ever sent. I confirmed the suspicion that had long been on all of our minds; my Grayson had Autism Spectrum Disorder. I said it then in those text messages and emails to family, friends and co-workers. I said it in writing because I could not say it in words. And over the next few weeks saying it out loud did not get any easier. At a certain point I called on my closest friends and family and asked them to share the news with anyone that needed to know. They loved me enough to do that for me. They loved me enough to know that I could not do that.

We went on like that for a while. I knew and they knew but we were not talking about it. They were waiting for a cue from me and I was way too weak to deliver that cue. We kept it close to us for so long that it began to feel like a dirty secret that we were hiding away; something to be embarrassed or ashamed of. And when I thought about it like that it made the diagnosis seem a lot scarier. I knew that I had to come to grips with Grayson’s diagnosis in a way that would allow us to move forward.

I slowly started to be more open about our autism. I started looking at the diagnosis as a part of our life instead of something that was taking over our life. Even though a lot of the time I felt like I was trying to convince myself of something that did not feel true. The more we talked about autism, the more it started to feel like something we could go up against. If people knew about our struggles then we would have that much more love and support behind as we travel down this path.

On my birthday last year I spent a lot of time thinking about how turning thirty-two really did not seem like anything special. Just another thirty-something year. Until one night when I sat back and realized what I survived in the year leading up to my birthday. When I started recalling my journey; leaving the year behind and welcoming thirty-two seemed like a significant reason to celebrate.

That year I learned a lot about myself. I learned that my ability to remain strong and focused was substantially greater than I previously imagined. I learned that my role as mom was the reason I was put on this earth. I was chosen to be Grayson’s mom, and Rowan’s mom. Motherhood always felt like a choice I had made. That year I learned that motherhood chose me. Being the mother to a child with autism chose me. And whoever chose me knew what I am now learning; I have the strength, persistence and tenacity to rise above any challenge laid at my feet.

I consulted my husband and told him that I thought it was time to make Grayson’s autism more widely known. Together we decided that I would make a Facebook post about Grayson’s diagnosis. The moment I hit “post” I felt the most tremendous weight lifted off of my shoulders. We were out. We were no longer embarrassed. No longer ashamed. We were going to start living our life out loud.

The reception to the news on Facebook was truly remarkable. I received words of love and encouragement from people from all different phases of my life. I reconnected with friends that I had not communicated with in over a decade. I found common ground and similarities with people sprinkled all throughout our lives.

The decision to come out tipped the power struggle between ourselves and autism in our favor. For the first time since we heard those fateful words; we were in control. It was unbelievably healing. I remember feeling lighter. Set free. I took the power into my own hands and I had no intentions of giving it back.

We went on like that for a while. I started to feel comfortable sharing things that showed up in my feed with reference to autism. Each time I shared something I felt a sense of pride and relief. And as we moved forward I knew that I had so much more to say. So much more to share.

Six months later I made the decision to start writing a blog about our journey along the autism spectrum. It happened almost accidentally. We were having a particularly challenging few weeks and I sat down to catch my breath and decided that day was the day I would start sharing our story. And, so I did. And, so I do.

People ask me all of the time about our decision to share our experiences in such a public way. I understand what they are saying. I am putting it out there in the only way that I know how; real and unapologetically authentic. I talk about things that are informative, things that are wonderful, and things that are really difficult to say. I share all of these things because they are all a part of the journey. Our journey.

I know that one day I will have to sit down in front of my son and find the words to explain to him that he has ASD. I know I will need to talk to him about my decision to share our story, his story, in such a public way. I know that those conversations will be difficult. But I also know that the child I raise will understand the importance of raising awareness through our experiences. He will understand that we are helping people. And, that we are helping ourselves. I will look into his beautiful brown eyes and I will make sure he knows how lucky I am to be his mom. I will tell him all of the amazing lessons he has taught me. And I will help him to understand how sharing those lessons is helping other people.

Autism is not a choice. The real choice is whether to embrace it or hide from it. I have done both. And, I can tell you with complete certainty that the choice to embrace the presence of autism in our life has changed us in so many wonderful ways. And I hope, even in some small way, that it is helping to change other people too.

JS

There is no manual given to parents after their child receives an autism diagnosis. There should be. There should be something printed in black in white that tells you how to breathe again. Something that gives you step by step instructions to survive. To be what you need to be. To be what your child needs you to be.

When we walked out of the hospital with an autism diagnosis, it was as is everything and nothing all changed at the same time. Grayson was still Grayson. I was still Grayson’s mom. And at the same time everything felt different. New. Changed. Unknown. I felt like a stranger in my own life. Words that I had only read in textbooks were now in my life in a way that I was not prepared for. But, how do you prepare for that?

And so I did the only thing that I could do, I put one foot in front of the other. I took deep breaths, in and out. I started my way along this journey. And slowly day by day, I became something so much more than I was before. I was still Grayson’s mom. I was still fighting like hell for him every single day. But I was different. Different in a really important way. I saw all of the ways, big and small, that autism began to infiltrate our lives. I saw it changing us. Our schedules, our plans, our family dynamics. I felt powerless against it.

I know that there are people out there who feel as if they do not have the strength to push forward. People who feel weak and defeated. People who feel beaten down. People questioning everything. People hoping to pinch themselves and wake up from a bad dream. I know this because I was that person. I was that person for a long time. Frozen in something unknown. Running from something that I could not outrun. And after a while I could not run anymore. So I had to actively learn to be someone different.  I had to teach myself to be an autism mom.

I did not figure it all out a one time. It came slowly. Naturally. Each time I went up against something bigger than me, it forced me to become more and more of who I am today. This is how I became an autism mom.

1. I stopped living in fear of autism. I needed to feel as if I had even the tiniest bit of control over the autism. And I found that control by relinquishing fear. I made certain that I was informed. I read books, I googled, I listened to the members of our team and I asked a lot of questions. I became the “Autism Manager” in our life. Certainly not a title that I ever imagined I would hold. I decided that there was no such thing as a stupid question. So I asked questions until I felt satisfied with the answers. I asked questions until I felt less fearful. And as I became more informed and more engaged, autism became less scary. Do not get me wrong, there are still things that scare the crap out of me! When I see a new symptom developing or when I talk to another parent dealing with a difficult challenge; I am fearful. And, I have to imagine I am not alone in that feeling. But the fear is different. It is a fear that I know I can harness. Control. Overcome.
2. I got it wrong, learned from it and then kept going. For every strategy that works there are several that fail. This is just a part of the diagnosis that you have to come to terms with. You will not always get it right. In fact, most of the time you will get it wrong. But give yourself time to stop and take a deep breath. Then learn from the experience and move forward until you get it right.
3. I came out. I stopped seeing autism as something to be embarrassed of. Something to cover up. I learned to see the wonderful gift that Grayson’s autism was to the people in our life. To me. I saw it as something that could teach all of us to be more resilient. I saw the ways he helped myself and others to be patient and kind. I found a voice for our struggles. I shared my voice and our experiences. I freed myself from the loneliness that came with hiding the autism away.
4. I surrounded myself with a network that “got it”. I was selective about the people we brought into the inner circle. I gave people in my life permission to talk to me in a real way about our real struggles. I forgave them for saying the wrong thing. And I forgave them for not knowing what to say. And they forgave me for stumbling through the diagnosis. They still forgive me today when I stumble. Stumbling is just part of the diagnosis. So I surrounded myself with people who could pick me up.
5. I give myself permission to be imperfect. This is the key to survival. Accept less than perfect! Forgive yourself. Tell yourself that you are doing the best you can. Know that you will always be enough for yourself and for your family.
6. I remember what I am fighting for.Look, the stakes are high. After all, we are talking about our kids. And whenever we talk about our kids we are filled with a crazy passion. My first thought after Grayson’s diagnosis was “How in the hell are we going to do this?” And sometimes today that thought still creeps into my head. And I have come to learn that the answer is quite simple; we just do it. Every single day. We find the strength to be what we need to be. Because we feel crazy love for our children. A love that is more powerful than anything that tries to stand in our way. And because we love them, and because they are the best part of us; we fight for them.

The truth is that if I was given the choice, I would certainly choose an easier path for my child and for myself. I have learned to embrace this journey, but that never fully replaces the feeling of longing for a life free of autism.

I am an autism mom. I am strong and brave. I am also weak. I am filled with fight. And I am filled with questions. I am confident in my mission, but tentative in my journey. I have moments when I get it right. And I have moments when it all seems wrong. At times I feel like a warrior forging ahead with strength and conviction. And other times I feel lost, retreating from the frontline. I am here. I am doing my best. I am perfectly imperfect. I am bruised but not broken. I am more than I thought I would be. And, often less than I need to be. I am fighting. I will fight. I am surviving. I will survive. I am fueled by an enormous amount of love for my children. I am a mom. And, I am an autism mom.

JS

As a parent to a child with a sensory processing disorder, I spend a lot of time trying to understand the way my son experiences the world. One of the most challenging aspects of his diagnosis is my inability to understand the things that he sees and feels. Ask any parent and they will tell you that there is nothing more difficult than to feel helpless for their children. Helpless to really know what their children need and want and feel. Helpless to comfort them. Helpless to make it all better.

We live in a world that is so full of sensory stimulation. Everywhere we go we are surrounded by lights and sounds and sensations. And this sensory world is becoming more and more automated every day. There is no way to escape the sensory encounters that are all around us. And, for the average person this may be annoying or irritating. “Thank you very much automatic flush, but I would like to finish going to the bathroom before you splash cold water on my behind.” But to kids like my son, these sensory things are so much more than annoying. They are debilitating.

My son is always tentative to use the restroom when we are away from home. Away from his comfort zone. As a 4 year old on the spectrum, we consider ourselves incredibly lucky that he is already potty trained. Some kids on the spectrum do not potty train until they are much older. And, some children on the spectrum never fully potty train.

Imagine walking into a public restroom as a four year old. To a four year old a public restroom must look very different than it looks to an adult. The restroom is big. It is cold. There are people moving about in every direction. There is a line. There are people washing hands. People opening and closing doors. Toilets flushing. Hand dryers sounding. To any four year old this would be overwhelming.

My four year old walks into the public restroom and immediately uses his hands to cover his ears. He cannot handle the variety and intensity of all of the sounds happening around him. He cannot process this myriad of senses firing at one time. So he retreats in the way he has learned to retreat. He covers his ears. He removes the sense. He hears less. He feels less. He comforts himself. Except even in this comfort there is an un-easiness about him.

Then he walks into the bathroom stall and he is met with a dilemma. How can he cover his ears and go to the bathroom at the same time? The answer is simple, he cannot. And because it breaks my heart, and because I cannot handle the look of fear and helplessness on his face, and because I would walk through fire for my son; I gently place my hands over his ears so that he can free his hands to go to the bathroom.

He finishes going to the bathroom. I remove my hands. He is proud of himself and excited to return from the bathroom and announce that “he did it”! And in that moment another toilet flushes. And, an automatic hand drier sounds. And then all over again his face is overcome with distress from all of these senses. And so we quickly leave the bathroom. Quickly escapes this overwhelming room of senses.

This is just one of the many reasons why it is so much easier to stay at home. In our very own comfort zone. Where sounds are controlled and regulated. Where senses are not overwhelmed. Where we all feel comfortable in our own bodies.

After the diagnosis I would have lived forever in the safety and comfort provided by the walls of our home. I found reasons every single day to cancel plans and continue the hibernation at home. We lived in fear for a really long time. And then one day we slowly started to test the waters. We learned that with the right preparation and the right tools we could venture out. Day by day we became more comfortable with the things that we could and could not control. And so we went out into the world.

But, the truth is that the world is not sensory-friendly. And, as I think about my son growing older I know that he will no longer want his mom in the bathroom covering his ears. But, as he gets older his aversion to the sensory overload in the public restrooms may not change. So he will find new ways to cope. Maybe he will wear noise cancelling headphones. Maybe he will wear elastic waist pants so he can easily shimmy them down. Or maybe, just maybe, the public restrooms will evolve.

Maybe public restrooms will become more sensory friendly. Maybe we will learn to give meaningful consideration to those living in this world with sensory processing disorders. Not because it is the easy thing to do. Or the cheapest thing to do. But, because it is the right thing to do.

I cannot imagine what living in this world feels like for my son. It is a thought that is always in my head. I wonder and worry about all of the obstacles that he will face. I go into so many situations armed with an evacuation strategy. I do that because I have to. And there will always be situations we cannot avoid. Triggers that set him off. Places we have to avoid. But there are a lot of situations we cannot avoid. When nature calls; she calls.

The next time you venture out of your house, think of all of the sounds and sights and sensations and scents that you encounter. Register all of them at the same time. And then imagine, just for a moment, that processing senses is difficult for you. Maybe it makes your skin crawl. Maybe it scares you.  So to cope, take one of those senses away. Close your eyes. Cover your ears. Plug your nose. That feels strange right? Like, you have lost something. Maybe you feel antsy. Unsteady. Because it is unnatural to take away your senses. To take away the way you process the world. But, what if you had to? What if that was your coping mechanism? What If you had to lose a sense just to go to the bathroom?

No, I do not know what if feels like for my son to go into a public restroom. But when I stop and try to imagine it; I just know that it needs to be better.

JS

Something completely out of the world insane happened today!!!

We flew to Colorado to visit my brother and my nephew. Just like many parents we always have anxiety about flying with the kiddos. I meticulously pack the carry-on bags to include a variety of kid friendly activities. Each kiddo gets there own bag of activities and snacks. And, just for safe measure we plopped an iPad into each bag.

We flew out of “the easy airport”. So we parked, checked bags, and made it through security in a matter of 20 minutes. And then we began the artful mastery that is killing time without killing each other. We played in the kiddo area. We watched the airplanes. We ran laps around each other. We went to the store. We went to the restaurant (mommy may have engaged in an alcoholic beverage). And then finally it was time to board the plan. We entered the boarding area the way we enter most places; like a bat out of hell. As we divided and conquered to follow children something caught my eye. Rather, someone caught my eye. I saw a woman in a western shirt with short curly hair. She was familiar to me almost immediately. And then I heard her provide behavioral therapy guidance to someone over the phone and I thought to myself “OH, MY GOD! This is Dr. Temple Grandin.”

I quickly grabbed my phone to Google search. In my excitement I accidentally initiated the software update on my phone. Shoot. But also kind of typical. I asked my mom for her phone. A quick Google search confirmed that it was in fact Dr. Temple Grandin!! I called my mom over, I knew as a psychotherapist she would understand. We looked at each other in disbelief. How surreal?!?!

We boarded the plane. As luck would have it I was seated an aisle behind Dr. Grandin. She was 2 feet away from me. I prepared to approach. And then, as often is the case, the kiddos stirred. Gray announced to the plan that he was in the “red zone”. I quickly turned to look at Dr. Grandin and she smirked. Ahhhh!!! She heard my kiddo taking about the zones!!! Did she know? Did she wonder? Were we about to spend hours talking about our autism connection?

Just as I prepared to approach for the second time the pilot announced that our cargo load was light and that someone would need to move to the back. Dr. Grandin looked right at me. She saw the 6 of us all together with our kids and she selflessly said “I’ll head in back there.” My face smiled but my brain screamed NOOOOOO!

“That’s ok”, I thought. She’s behind me in the plane. One way or another I will introduce myself, and my amazing son, to this woman who has given her life to advancing the world’s understanding and acceptance of autism.

At the end of the flight we de-boarded the plane outside. We had to wait for the green tagged stroller that went under the plane. And I knew, this was our opportunity. She was the last person off the plane. She had her bags carried on with her and she looked ready to go. I quickly walked over to her. It was very loud on the tarmac, so I gently touched her arm and said “excuse me, Dr. Grandin. My son has ASD and it would mean the world to me if you would take a picture with my son and I.” She seemed hesitant but responsed “sure, ok”.

Gray was so obsessed with the airplanes that he could not focus on the amazing photo op. We quickly snapped a few photos. I told her “from the bottom of my heart I thank you for all you have done to pave the way for my son.” She looked at Gray and told him to “behave.” Then she looked at my mom, fancy and fabulous as always, and asked if we were in town for the livestock conference.” Nope. Not even a little. Lol.

Oh, what a wonderful experience. I think about having those pictures and what that will mean for us as we continue down this journey.  I do not know where my autism advocacy path with lead. I do not know all of the ways Grayson’s Autism spectrum diagnosis will change and impact the course of our life. But, I do know that wherever we go we will carry this memory with us forever. I feel blessed. I feel empowered. I feel ready to take on whatever comes next.

Thank you Dr. Temple Grandin. Thank you!

JS

I saw a post at the beginning of the summer that said “some days I need the music and some days I need the lyrics”. I could not agree more! I grew up in a house full of music. My grandma sang in the church choir. My dad played the saxophone and the piano. I learned piano at age 5. I played the Clarinet in grade school band. I sang in choir and musical theater all throughout high school. When I was 3 years old I knew all of the words to “Sultans of Swing” by Dire Strait. When I was 5 I jumped on my uncle’s water bed and belted the lyrics to the Beach Boy’s “Kokomo”. Music has always been a part of my life. It provides the soundtrack to so many moments, good and bad.

As a pre-teen I listened to the music of the 90s – loaded with teen angest and underlying messages – which I could not even begin to understand in all of my thirteen years of wisdom. I thought that Blind Melon’s “No Rain” was really about them wanting the sun to come out. Literally. Not figuratively as I understand it today. I whined along with the Cranberries and I shouted along with the Beastie Boys. I listened to Biggie and pretended I was hard core. Let the record show, I was the farthest thing from hard core.

In my late teenage years music helped me grieve loss. Even today when I hear the first few notes of “Angel” by Sarah McLaughlin the hairs on my arms rise and my heart floods with memories of losing my grandma. And when I feel like I am losing faith I put on “Higher” by Creed and I am surrounded by memories of my friend Josh and thoughts of a life taken way too soon. These songs remind me to be thankful for the life I am blessed to live every day. They represent moments in time. They make even the most painful moments seem just a little bit sweeter.

In my twenties music marked every single up and down of my personal relationships. Many a Howie Day and John Mayer song played on repeat after a breakup. The cheesiest of love songs were labeled as “our song” each time I entered a new relationship. And, I can so clearly recall the melodies and words that lifted me up and carried me through the ending of my first marriage. Music marked the beginning and the end of love; and all of the moments in between.

In my thirties I connect music to so many different moments in my life. It symbolizes motherhood. Struggles. Moments of strength. And moments that hold me down. Music has the incredible ability to become what you need it to be.

My fight song, “Rise Up” by Andra Day makes me feel so strong. This song is the anthem for my journey on the spectrum with Gray. It has saved me from myself on so many days. When I need to tune the world out for a minute and let myself just breathe. It creates that space for me. It gives me permission to feel weak. And then it gives me the strength to move forward. Stronger. Better. And maybe just a little braver.

This summer I discovered the song “Remedy” by Adele. I know, how in the world did I just discover this song? At the beginning of the summer a dear friend started a very difficult and painful divorce. When I found this song I listened to it over and over again on repeat. I felt as if this song had been given to me to help my friend find strength. To be healed. I believed as the words said, “when the pain cuts you deep, when the night keep you from sleeping. Just look and you will see, that I will be your remedy.” What a beautiful ideal. The remedy that saves you from pain. The thing that pulls you back from the edge. Back from sadness. From loss. From heartbreak. From the end of something. Into the beginning of something else.

I decided that my friend would find the remedy to her loss. If for no other reason than because Adele said so! And, as I thought about her loss and prayed for her remedy, I realized that I myself felt loss. The kind of loss that parents feel when their child is different from other children. When they accept the life they planned may be very different from the life they will live.

I myself needed remedy. Remedy to give me strength. Remedy to keep going. Remedy to heal my heart. Help me be better. Braver. I believed. And I waited.

And as I waited I realized something important; neither of us were going to be saved by a magical remedy. No one was going to sweep in and wipe away our pain. Fix what needed fixing. Mend what needing mending. Heal what needed healing. The truth is that we were already our own remedy. In our own way we pulled ourselves out of the things that could have held us down. We survived the things that could have swallowed us whole. We feet pain and sadness and loss. And then we find the strength to rise against it. To push. To fight. To be healed.

And ironically, we are fighting two completely different things. But somehow the fight feels the same. We both just want to be better. And because back is not an option; we keep moving forward. We endure the unendurable every single day. Because the stakes are high. Because happiness is the reward. Because it is all we know to do. We find a way, each and every day, to remedy ourselves from the obstacles standing in our way.

Somedays I need the music, but today I needed the lyrics.

JS

Dear Munchkins –

Autism treatment can sometimes feel like the “try everything” approach. And believe me, in our short time on the spectrum we have tried A LOT! Daycare (for socialization), essential oils (for calming and sleep), clean eating (for behaviors), and the list goes on and on. The amazing thing about committing to ABA therapy is the “team” that you inherit in doing so. Our roster is deep. And even though the players change from time to time, we always feel the comfort of the team standing beside us. It also helps to ease that “try everything” mentality. Because for right now, in this moment, ABA is the method that we are committed to. And there are so many wonderful behavior-change techniques that we incorporate into our methods, and they are all a part of the same treatment plan. It feels a little less like a drunken game of darts, and a little more like a calculated game of chess. Just call me Bobby Fisher.

Part of our treatment is a learning system known as Zones of Regulation. I’ll refer to it here as “zones” because that is how we refer to it around our house and with our treatment team. Zones is not a therapy; rather an integrated system developed to help children learn and explore their own ability to control and regulate their emotional responses. The implementation occurs through a few different phases; which are dependent on the age of the child. Grayson started with this treatment around March of this year, just before his 4^th birthday. At four years old the treatment requires a pretty slow integration. In its entirety Zones is intended to help people first discover their emotions (truly understand what it means to be happy, sad, angry, scared, excited, etc.) The initial goal is she him demonstrate an understanding of what the emotions look like. In our experience Grayson learned to demonstrate his understanding through facial/emotion recognition using picture cards or by identifying or imitating the emotions of people he sees in person or on TV.  Our team incorporated feeling and emotion cards into his treatment time. And slowly overtime Grayson began to correctly identify the emotions of himself and other people.

The next step of the treatment was to begin to associate the emotions with colors (each color is a zone). Blue Zone includes: sad, sick, tired, bored and moving slowly. Green Zone includes: happy, calm, feeling okay, focused, ready to learn. Yellow Zone includes: frustrated, worried, wiggly/silly, excited, loss of some control. And the Red Zone includes: mad/angry, terrified, yelling/hitting, elated and out of control. For the most part, Grayson relates the colors to the feelings/emotions that are the simplest to understand. In our house, Blue is sad, Green Is happy, Yellow is wiggly and Red is mad. We are still working to evolve his understanding of the zones and the colors to include all of the emotions; even the ones that are harder to explain and identify.

Once Grayson more fully understands the zones in their entirety, then we will begin the next phase of the treatment; regulation. Anyone who has parented a four-year-old knows that regulation is no easy task. There is so much running through their heads in any given moment. And there is so much temptation. So the trick to this therapy is to use the zones to regulate and control the temptations. I am excited to see what comes next. Because I am impatient and excited (I am in the yellow zone) I cheated and read ahead. So I know that lies ahead for us and I cannot wait. We will work on building Grayson’s toolkits for moving from zone to zone. We will teach him to recognize what zone he is in. And, if appropriate how to help move himself into a more appropriate zone. Both the red zone and the blue zone come with their own coping box or toolkit. This will be a “kit” of things that help Grayson find his green zone. The yellow zone is usually a sign that Grayson has some extra energy to expel. So the best “fix” for the yellow zone it to introduce a sensory activity or some way for him to get a physical burst of energy out of his system so that he can refocus and settle into the green zone.

Another big part of the zones treatment is a deeper understanding of triggers. First we will learn to identify and avoid triggers (SO MUCH EASIER SAID THAN DONE). This is something we already spend a lot of time, but at Grayson’s age the triggers change a lot and they are often difficult to control. The real breakthrough in the zones treatment will be when Grayson learns to recognizes and avoid his own triggers. And the realist in me knows that we are probably years from this breakthrough. But the optimist in me feels better just knowing that it is ahead.

As I write this I realize just how much I have learned about the zones therapy over the past six months. I have a tendency to go “all in” when we introduce a new treatment. I want to know everything about it. So, I ask a million super annoying questions to our case manager. I research (read: Google) everything I have access to. I talk to other people who have experienced the same thing. In our world information is power. And the more I know the more powerful I feel to fight through some of Grayson’s symptoms.

In our lifetime as parents I am sure that we will try a million different techniques and strategies. And sometimes we will knock it out of the park and sometimes we will fall flat on our faces. And I do not think there is a parent out there who does not expect the parenting journey to go that way. The truth is, we leave the hospital with these precious little kiddos after birth without a map. We leave with a hope, a wish, a prayer and a whole lot of love. And somehow armed with only those things we navigate all of the ups and downs. We do our best. We try anything and everything we can to give our kids the best possible life. And somehow, no matter what, it is enough. Doing everything you can is enough. It has to be.

JS

Over the past several months I have shared so much about our lives in this space. We talk about parenting and advocating for our children. We talk about struggling to get through the day. We talk about different aspects of autism in a quest for greater understanding. We talk a lot about dynamics. The dynamic between myself and Grayson. The dynamic between Grayson and his brother Rowan. The dynamic between Grayson and his classmates. Between Grayson and the world. And that really just scratches the surface of the relationships in our life impacted by Grayson’s diagnosis. I have talked about things that are true. Things that are hard. Things that are almost too difficult to say, or to hear. And from somewhere inside of me that I did not know existed when I started this journey, I talk to you. I tell you all of the ups and downs of our life. You have come on this journey with us. And for that, I thank you.

Today my husband and I celebrate our 5 year wedding anniversary. Sometimes it feels impossible that 5 years have gone by. And sometimes it feels like we have lived 5 years since last Thursday. I think that ebb and flow is part of the marriage gig. A marriage takes on the life of all of the things happening around it. When I stood in front of my friends and family and vowed to love my husband forever; I had no idea what twists and turns would be in store for us. This 5 years of marriage has been filled with so many wonderful moments. We have experienced so many firsts together. We brought 2 amazing little boys into this world. We have seen each other through job changes. We have supported each other as we pursue additional education and training. We bought a home together. We navigate the ups and down of all life throws our way. We try our best to be what the other needs. Even in the moments when we have nothing left to give. And then 2 years ago we sat next to each other and heard the words “your son has autism spectrum disorder.” And in that moment, and in every moment since, we were changed. How could we not be?

Did you know that the divorce rate for parents of children with Autism Spectrum Disorder is 80%? That is shocking right? That is over 1.75 times higher than the national average of 45%. And as shocking as that number seems, I can tell you that I completely understand. I understand because I am in marriage with a child on the spectrum. I feel the weight of the diagnosis in our life, on our marriage. Every single day. We feel pushed and challenged and called to be stronger than we know how to be. We choose to put our children first and to fight every day to be better. And then we both go to work and try to give 100% to our jobs. To the careers that afford us the ability to purchase new items for our treatment space. To our employers who allow for leniency in our scheduling so that we can make it to appointments.  And then we come home to a house that needs to be cleaned, laundry that needs to be folded, and children who need to be snuggled. And then after they are both tucked in, and after we have prepared for the next day, we have to dig deep inside of ourselves to find something left to give to each other.

When I met James I was nineteen years old. My life was the definition of simple. I was working part-time as a nanny for teenagers during my summer home from college. Which mostly meant that I was working full-time on my tan. I worked during the day and then spent the evenings swimming and basking in all of the wonderful Lake Geneva summer glory. And during that summer I met James. Life was easy and fun and we had absolutely no idea what lay ahead. The path that lead James and I to the life we have today was not straight. Our lives took us in different directions. And as life continued to twist and turn we found our way back to each other. When we reconnected after six years we were so different from the teenagers we once were. We understood more about love and loss. We understood more about being in a relationship. We understood more about life. Both James and I were married and divorced in our mid-twenties. I think it is important to share this (and I asked my hubby’s permission before outing him) because I want you to understand that I truly understand how difficult it is to join your life with someone. In my first marriage I joined my life with someone before I had any idea who I was alone. You see when I was younger I bought into the notion that I should be looking for a partner that was “my other half”. Someone to complete me. And the first partner I choose for myself fit the equation in my head. I was serious and he was goofy. I was rooted and he was up for adventure. I thought that by him being all of the things that I was not, we somehow made a whole. I learned the hard way that marriage is not about finding someone who completes you. It is not about being the other half of anything. Marriage is about two whole, complete people finding each other and living together as a pair. Because it takes two full people to complete a partnership. I realized that my earlier vision of love and relationships painted me as only half of a person. And, who wants to be half of a person?

In my life with James I have always looked at us as partners. Two whole, complete people who come together every single day to face whatever life throws our way. Being married is hard. Every single day. And that is just the truth. I sometimes refer to our journey with Grayson as a “pressure cooker” for our family. You take good people, in normal circumstances, with normal obstacles; and marriage is tough. You take those same good people and you throw in an element that stirs things up and adds pressure; and the challenges in a marriage take on a whole new life. There is so much pressure. So many reasons to shut down. So many opportunities to give up. So many moments to dig deep. But every day I wake up and I choose not to be the 80%. I choose to fight through the obstacles that we face. When I mess up I choose to look for ways to be better the next day. And sometimes, the next day, I mess up again. Sometimes I am under slept. Often times I am over worked. And most times I am just doing my best to get by. But marriage does not stand still. It moves with you. It follows where you lead. So even when you need a break it keeps going. Like a warm blanket. Or maybe a strait jacket depending on the day. Marriage is a decision I make every single day.

Is our marriage harder because of autism? Absolutely. I have seen firsthand why 80% of couples living with a child on the spectrum find it too difficult to make their marriage work. So I give myself permission to have moments of imperfection. I give my husband that same permission. I often give the example of marriage and autism being like marriage and a newborn; NOTHING positive is exchanged between couples after midnight when everyone is tired. So you come up with a rule: do not say anything. Just survive. Get through the difficult moment. Focus on the child. Focus on putting the fire out rather than throwing fuel on the flame. I break my own rule sometimes. And then in that moment I remember exactly why that rule exists. The rule exists to protect us. From ourselves and from each other. Because sometimes life gets real. Sometimes life gets hard. Sometimes we are beaten down, emotionally and physically. And the strongest marriages are the ones who learn to bear down, brace for impact, survive, and then move forward together. Happier. Better. More complete.

I choose marriage every single day. I choose my wonderful husband every single day. For a million reasons, big and small. I choose him. I am so lucky that he chooses me to.

JS

Today life served me up an important reminder; even the most concrete things need a margin of flexibility. We become so ingrained in our crazy schedule. We arrange all of the pieces of our life so that they fit just so. We push ourselves and our kiddos to move through the schedule and to check all of the boxes. We ask so much out of Grayson. We ask him to forgo the normal 4 year old experience to spend 25 hours a week in behavioral therapy. We set expectations and we push forward and then sometimes life stops us in our tracks. Life reminds us that we need to build flexibility into our schedule. We need it. And Grayson needs it.

Today Grammie picked Grayson up (just as scheduled) to go to camp at his Montessori school. We had a terrible night of sleep at the Sylfest house (not just as scheduled) and so Grayson got a later than usual start to his morning. He was excited to go to camp and when Grammie arrived they headed out the door. As Grammie’s car rolled into Lake Geneva Grayson grew increasingly worked up. Reiterating over and over that he did not want to go to camp. When he got to camp and saw his technician he started screaming “No”. Grammie, the teachers, the technicians, everyone tried to coax Grayson out of the car. But it just was not going to happen. So Grammie made the decision to take a break and head off to run a quick errand with Grayson. Grayson and Grammie called me a few minutes after leaving the school. My initial reaction was a learned reaction. My time on the spectrum with Grayson has taught me to know well the importance and benefits of our strict and over-the-top schedule.  I immediately thought of the schedule. I thought about losing 3 hours of therapy for the week. I thought about rearranging the care providers since the nanny was already in route to the beach with Rowan. I thought about all of the perfectly organized pieces of the schedule and I saw them completely falling apart. Then I realized that I needed a break. I turned my brain off long enough to realize that Grayson has not had an honest to goodness true “day off” since sometime in the spring. We always take Sundays off as a family, but on Sundays we are on the go non-stop. So while he may not be in therapy he is still following the schedule that James and I set. I called our technician and she spoke with our case manager. We were all in agreement; Grayson needed a day off. Grayson DESERVED a day off.

Today Grayson did whatever he wanted to do. In the morning he ran errands with Grammie. Then he went swimming at his great grandpa’s house. After swimming he had lunch with Grammie. During Rowan’s rest time the nanny took Grayson to the beach. (She was there in the morning with Rowan. It just so happens to be her birthday and I think what a gift it must have been for her to have that “free time” at the beach with Grayson). Today, there was a schedule. It was color coordinated and orchestrated to perfection. But today, we threw the schedule out. Today, Grayson just got to be 4. No one expected anything of him. No one took data on his goal achievement. There were no timers. There were no “hall pass” cards. Today, Grayson just got to be Grayson.

I needed this reminder. Especially right now on the cusp of our even-more-insane fall schedule. I know that we need to have schedules. I know that the insurance company regulates the number of hours of therapy we need to achieve in the week. I know that the work we are doing in therapy is important. But I also know that sometimes we all just need a day off. It was silly of me to forget that Grayson, just like anyone else, would need a day off.

Thank you Grammie and Christi for having the most wonderful day off with my baby boy! And thank you life for the reminder that every once in a while it is ok to throw the schedule out the window!

JS