Today was my son’s day to be the Special Person in his 4K classroom. This is a very big deal for a 4 year old! The special person gets to bring in toys and books to share with friends. They get to be the line leader. And, they get to invite mom and dad into the room to participate.  We watched as our son interacted with his typical peers. We watched as the smile spread across his face. This was a good day. And as good a reason as any to celebrate!

We usually avoid eating in restaurants. There are so many unpredictable variables. So many things that we cannot control. We often feel judged by people around us. And, since we already spend a considerable amount of time judging ourselves, we try to avoid the extra judgment.

Today we put all of that aside and we went to lunch as a family to celebrate our special person. We walked into the restaurant and Grayson told the hostess exactly which table he wanted. We sat down together. Almost immediately Grayson started to make loud noises. He was hungry and excited and adjusting to the new environment.

James and I went into our usual auto-pilot “situation management” mode.  We quickly began redirecting Grayson. We tried to tune out all that was happening around us. But some things are hard to tune out.

You were hard to tune out.

Look, I get it. Nobody comes to a restaurant hoping to listen to a child make loud noise. I understand that loud noises are unpleasant. I understand this more than I ever cared to. I lived in my house for a 6 month period surrounded in every direction by shrill screams. The kind of screams that make the hairs on your arms stand. I heard screams so loud that my body actually had a physical reaction. But that is not what was happening today. Today Grayson was settling into a new environment and trying to let us know what he needed.

I know that you were just trying to have a nice lunch. I know that hour of your life was supposed to be quiet and enjoyable and without interruption. And, because of the noise coming from my child that hour of your life took an unpleasant turn. That hour of your life was noisy. That hour of your life was not how you expected. But, that hour of your life was just one hour of your life.

That one hour of your life is every hour of my life.

When my son started to scream I felt bad for you. The way I feel badly for every person we encounter out in the real world when Grayson’s behaviors peak. And then, you did something that made it so difficult for me to feel badly for you anymore. You autism shamed me.

I saw you peering at us every few seconds. I could see your irritation growing. And as your irritation grew, my anxiety grew. I willed Grayson to stop. I became more aware of your irritation than my son and what he needed. Your irritation became the biggest thing in the room. Bigger and louder than my son’s scream. You got in the way of my ability to help calm the situation. I heard you tell your husband that you wanted to move tables. I saw the intention in your face when you locked eyes with me. You may not have used words, but I could see your thoughts written all over your face. My son was naughty. And, I was a bad mom.

When I replied, I used words. I did not return your passive aggressive glare. I looked at you and I said as calmly as I could muster “I am very sorry. My son has autism, my husband just ran to get him a snack and he will be calm in just one moment.” You looked at your husband disapprovingly. As if my “excuse” was not good enough for you. Your husband looked back at you and loudly said “oh, Autism.”

Your looks continued. You were still irritated, but now you were also curious. The weight of your glare became too heavy. We picked up all of our personal belongings. I did not know where I was going, but I could not stay there. I could not stay in that moment with you.

A very kind waitress who witnessed the exchange came over to me and said “we have a really awesome table up front by the window where he can watch cars. Does he like cars?” I wanted to hug the waitress. I wanted to cry and hug her and thank her. We had just been autism shamed and then she saved us.

We moved to a new table and had a wonderful lunch. Grayson sat joyfully and recounted the details from his “Special Person” day.  And, although my husband and I tried to be present in the moment with our boys, we were still stuck in our moment with you.

Our lunch intended to celebrate a great day became something different. It became something negative. Something filled with shame. Something sad. You did that. You did that with your looks. You did that with your words. You did that in your unwillingness to soften after we told you about our son’s diagnosis. You did that by making our son’s diagnosis be something that we felt we needed to say. You did that.

You may think you won. After all, we moved and you were able to enjoy a quiet lunch. But, you did not win. In the game of life, you lose. You lose because you were not kind. Because you did not show us tolerance. Because for one hour of your life you could not show compassion to other people. People who were clearly struggling. Because you assumed that my son was typical and that I was a bad mother. Because you assumed anything about someone who you did not know.

No, you do not win. Kindness always wins. Tolerance always wins. Compassion always wins. What you did…that does not get to win.

I hope you enjoyed your lunch. I hope you enjoyed that single hour of your life. Thank you for making that hour of my life just a little bit harder than all of the rest. Thank you for the reminder of the world I need to protect my children from. Thank you for igniting my fight. For fueling my fire.

My son has autism. What is your excuse?

JS

I am thankful for so many things.

I am thankful for my health. I am thankful for the friends and family and co-workers who surround me each day. I am thankful for the roof over my head and the food in my pantry. I am thankful that each day I go to a job that I love. I am thankful for our steady paychecks. I am thankful for my two beautiful little boys and the gifts of unconditional love and laughter that they bring into my life. I am thankful for the love and support of a husband who is my true partner in every sense of the world. I am thankful for mom and her skills as a therapist that I put to use every single day. I am thankful for early detection. For mother’s intuition. I am thankful for the team that surrounds us. I am thankful for the faith deep inside of me telling me that everything will be ok.

I am thankful. Every single day.

I am thankful on the good days. And, I am thankful on the bad days. I am thankful on the days when things feel together and whole. And, I am thankful on the days when things are shattered and broken. I am thankful on the days when I get it right. And, I am thankful on the days when I get it all wrong. I am thankful when I feel rested. And, I am thankful when I am exhausted. I am thankful when we move forward. And, I am thankful for a chance to start again when we move backward.

I am thankful.

During parts of this journey I realize just how easy it is to lose faith. And, sometimes I do. Sometimes, even just for a moment, I let the faith run out of me. I let myself forget all that I have to be thankful for. I let the week or the day or the moment get the best of me. Just for a moment. I am overcome with emotion and fear and the feeling of inadequacy. I question myself. I question the things around me. I question how in the world anyone thought that I was strong enough for this journey. I question everything.

And for a little while I let myself live in that place of question. That place of doubt. And fear. I have learned that this is all a part of my journey. So, I let myself linger there for a moment. Until there is nothing left to question or doubt. Until there is nothing left to fear.

Free of questions and doubts and fears I move forward. I put myself together; piece by piece. All of the pieces of me. I remind myself that each day of this life is a gift.

Sometimes the gifts of a particular challenge are unclear to me. And, as much as I try to bring it into focus, I am unable to see it clearly. I try to force it. But some things cannot be forced. That is another important lesson I have learned along this journey. So I have to put my faith in the journey. I have to put my faith in something that I can feel even though I cannot see it with my eyes.

It is the faith I have deep inside of me that propels me forward. It is my strength. It is my ability to wake up and do it all again tomorrow. It is my ability to wipe away my tears. To cover my bruises. To fight when I want to flee. To stand tall when I want to cower. To be stronger than I thought I could be each and every day.

I am thankful for my faith. I am thankful for all that it gives me along this journey. I am thankful that I do not have to walk this journey alone. I am thankful for the love and the faith of the people around us.

Sometimes it is easy to lose sight of things that we cannot see. Always keep sight of your faith. Faith in yourself. Faith in the people you love. Faith in things all around you. Even the things you cannot see.

JS

My 4 year old son was diagnosed with autism spectrum disorder when he was 2 years old. In the 2 years since diagnosis we have experienced the ups and downs of this unpredictable disorder. We have celebrated moments of pure joy. We have grieved loss. We have been angry and sad and excited and joyful and anxious and every emotion in between. We are at the mercy of something that we cannot control.

Describing Grayson’s autism is like describing the wind.

There are times when he is calm and steady. His presence is known but not felt in a way that is either too much or too little. In those moments he moves throughout our life spreading his infectious joy. He finds excitement in things that others barely notice. An airplane in the sky. A water tower in the distance. The color green. Something shaped like a planet. A familiar song.

There are times when he is a welcomed relief to the heat and the pressure of the world around us. I disappear into those big brown eyes and dive into his world. His laughter is the purest form of happiness that I have ever experienced. He asks me in his silly voice to give him “kissles”, his very own combination of kisses and tickles. He cracks a joke and laughs louder than anyone in the room. He reminds us in those moments to just breathe. In that moment, everything is ok.

There are times when he is is too rough, too fast. Too much. He is unsettled. He moves and shakes everything around him. He comes in without warning and changes the moment. And after he has gone we are different. We are changed and tossed about. It is hard to remember where we were before he changed us. And because we cannot remember, we start fresh from our new place.

Autism is like the wind.

The volatile and angry moments of Grayson’s autism are the hardest moments. They are moments that live only in our heads and in our hearts. So often the people standing the closest to us do now know about the moments we are enduring at home. We protect other people from those moments. And, we protect ourselves too. Because living those moments at home is one thing, but saying it out loud makes them real in a way that is just too painful.

The physical side of Grayson’s anger is unpredictable. A moment can be peaceful and calm and in one instant it changes direction. We see the anger spread throughout his body. Before we even know what has happened he is tense and yelling and red and filled with anger. He slams the door to his bedroom with so much force that the door jam is broken and separated. When he slams other doors in the house he knocks pictures from the walls. He picks up vases and pictures and toys and slams them to the ground. He makes sure to make eye contact with you before he does it. He hits and kicks and pushes. He throws things. Hard. 6 months ago he threw a cup so forcefully at our TV that he shattered it. And he did it again yesterday.

In these moments there is little we can do to help him calm down. The anger needs to run its course. Our only goal is to get Grayson in a space where he can be alone. To keep him safe, and to keep other people safe. This boy who is so sweet and so loving and so wonderfully joyful has absolutely no control over his body in these moments. When I look into his eyes I can see that he is not in control. I can see my sweet boy inside fighting to get out. To take control of the moment. To regain control of himself. In that moment, our sweet boy is lost.

Sometimes it takes 2 minutes. Sometimes it takes an hour. Sometimes it takes a day. We help Grayson take deep breaths. We give him space. He calls this his “break”. Sometimes he asks for the break on his own, and sometimes we have to insist. In time, the moment passes. And we all sit amongst the shattered pieces. Are there physical things that are broken? Yes. But, the shattered pieces that are the most difficult to clean up are the pieces of our hearts.

I know that there is no easy fix. I know that we must continue to do the work; at home, at school, and in therapy. I know that I must put on a brave face and continue to show my son love. To endure all of the pieces of this diagnosis, even the shattered ones.

As we head into a time of year filled with thankfulness, joy, and peace on earth; I have just one request of you. Be good to each other. Remember that what we see is such small piece of what is really happening. Show love to people, even people who are hard to love. And forgive. Forgive people. Not because you have to, but because you want to. Just be good to each other. It is really that simple.

It is truly only with the love, support, and understanding of friends and family that we are able to pick up the pieces and move forward.

JS

To you –

I try to imagine just how different things might be for you. Sometimes our life with autism feels like quicksand. As hard as we try to rise above, we are perpetually pulled back down. The cycle is exhausting. It is difficult to envision that cycle will ever end. Sometimes I wonder if we will just spin round and round forever.

Do you remember all of the moments that you thought just might swallow you whole? Do you remember sitting in the middle of your own life feeling like a complete stranger? Do you remember saying to yourself that you just might not be strong enough? Do you remember believing that with your whole heart?

I sit here today overwhelmed by all of those feelings. And instead of looking at today, I tell myself to look forward. I plead with myself to keep faith alive. To believe that one day this journey will be easier. That at some point I can stop living my life one moment at a time. One incident at a time. One behavior at a time.

I need to know that we survive this. You and me. I need to remember that I am doing this for you. I am putting in the work. I am crying the tears. Feeling the pain. I am pushing forward with everything I have to give. So that maybe, one day, you can stop pushing. Free of tears. Free of pain. Free.

When you read this I want you to know that in all of those moments when you doubted yourself, you were wrong. You were always strong enough and brave enough and steadfast enough to survive this journey. You doubted yourself because that is what this journey does to you. It makes it so easy to doubt everything around you. And so you do.

Living in the middle of this journey is painful in a way that I had never experienced pain before. Sometimes I feel so close to the beginning that even thinking about what lies ahead makes me tired. Walking towards a moving target is a thankless and tiring journey.

But with hope and love in my heart, I walk the journey. Broken, but somehow still whole in the ways that matter the most. In the way that my family needs me. And, in the way I need myself.

I think of you often. I wonder if your pain is still the same. I wonder how the pain changes as we settle into this journey. Is it better? Worse? Is their comfort in experience? Is their joy in the progress? Or, is their sadness in the unrelenting and unchanging prognosis.

Are we thankful for the things along our journey that tested us? Today I resent them. Today I narrow my glare on them and wonder how in the world I will overcome them. And then I remind myself that I am a person who overcomes.

But, is autism something that we can really overcome? That seems impossible. It never goes away. It never stops. It is the unwelcome visitor in too many moments in my life. It is bigger and stronger and more resilient than I am.

And despite all of the reasons why we should not overcome it, I cannot shake the feeling that we do. We outsmart it. We over power it. We rise against it. We win. Maybe the autism changed, and maybe it did not. But we changed. In moments you felt as though autism defined you. You began to look at your life as “before autism” and “after autism”. You saw yourself that way. And because you saw yourself that way, you assumed other people did too. You worried about that. You worried about that a lot.

But you were wrong. Autism never defined you. It changed you and tested you and pushed you. But, it did not define you. You were defined instead by your commitment not to let autism define you. That commitment, that fight, was more defining than Grayson’s autism diagnosis ever was.

I am tired. Tired in a way that seems hard to move through each day. I am sad. Sad in a way that seems all consuming. I am scared. Scared in a way that seems vulnerable and week. I am lost. Lost in a way that seems permanent.

But I will find myself. I will find me so that I can become you. I will be someone many years from now looking back on this part of the journey. Thankful for the lessons and the experiences. Wiser, smarter, and stronger for having pushed forward. For enduring. For surviving.

I will find a way to make it through each day. I will do this for you.

From Me

I saw a posting on Facebook this morning that said “You can be a mess and still be a good mom. We are allowed to be both.” I scrolled past this quickly at first and then stopped and scrolled back up. And as I stared at the words on my computer screen I realized just how much truth and power lie in those 17 words.

I fall asleep most nights thinking of all of the ways that I can be a better and stronger mother, woman, friend and wife. I often reflect on the moments in the day that tested my patience. The instances when I believe I could have done better. And, as I replay the moments I will myself to be better the next time around. I give myself permission to be imperfect as long as I am always working to be better.

Better. How do I define better? For me better is about finding balance. Better means being stronger, but allowing myself moments of weakness. Giving more, but also learning to take what I need. Building myself up, but not feeling defeated in moments when I break down. Better is a moving target. And each day I wake up and take aim.

I set my sights on being the best I can in any particular moment. I recognize that some moments get the best of me. I learn from those moments. I admit that I do not always say and do the right thing. I pay attention to those things.  I know that all of my mistakes are a part of my journey to better. As a person and as a mom.

Along the journey with Autism people tell us all the time how they admire our strength and courage. I should be grateful for the compliment. I should say thank you and move on. But when people tell us they admire our strength and courage it often reminds me just how weak and scared I really am.

This morning while walking to school with Grayson a little boy passed on the scooter and said “hi Grayson.” Grayson did not respond. I asked Grayson to say hi. He told me no. I asked him to please look his friend in the eyes and say hi. He told me no even louder. I gently told him “ok, maybe later.” As the child and his mother walked ahead of us I spoke gently to Grayson about the importance of talking to our friends. I reminded him of all of the friend conversations we are working on in treatment. I told him that it makes his friends happy when he talks to them and answers their questions.

A while later we arrived at school. I waited with Grayson and then kissed him on the head and sent him on his way. As I walked back home I thought back to that moment with his friend. I thought about how my parenting journey looks very different than I thought it would.

You see, I never imagined that I would be coaching my child to look his friends in the eyes and say “hi”. I did not think that I would need to be such an active part off my son’s social life. In my vision of my life I walked alongside my son on the way to school hearing all about his friends and his excitement for the day. But, my parenting reality is very different.

It is easy to feel defeated when I spend too much time focusing on what might have been. It makes me feel anxious and out-of-control. So I actively train my brain to focus on what is. And in our life, autism is.

Autism changed the way I define better. Sometimes better just means surviving. Sometimes is means making it to bedtime. I know that a lot parents will read that and empathize. And believe me, sometimes I do cart wheels when my typical 2 year old finally hits the sheets for the night. But as the mother of 2 sons, 1 typical and 1 not, I can tell you that the feeling I have when Grayson is down for the night is different. The survival is different. Somehow surviving another day along the autism spectrum has become a badge of honor. And sometimes, the survival alone makes me better.

Some days I am a complete mess. I do my best rise above the disheveled mess that I am and I push through to the end of the day. I survive my mess. And, my mess survives me.

17 simple words with so much truth. “You can be a mess and still be a good mom. We are allowed to be both.” I know, because I am.

JS

Being a parent is a full-time job, regardless of the fact that I work outside of the house. And, early in my parenting journey I learned that part of that job would include acting as the “Autism Manager” for our life. It certainly was not a job I expected. I never imagined that autism would be a part of my parenting journey in such a real and all-encompassing way. But, along the parenting journey we rarely get to choose the things that our children will need from us. So we take it as it comes. Each day. We learn what our children need from us. And because of our love and adoration for our children learning what they need and giving them what they need and becoming what they need becomes your life’s mission.

When I became the “autism manager” for our family I learned quickly that I needed to make every effort to separate my emotions from the day to day pieces of this journey. The good the bad and the really really ugly. There is a time and a place for my emotions, but not inside of the thousands of meetings and decision that would lie ahead along our journey

This sounds impossible, right? After all, it is unnatural to remove emotions from anything pertaining to our children. And if I am being completely honest, it felt impossible. But, it also felt necessary. So I learned to separate my emotions from the scheduling and programming part of Grayson’s autism.

In Grayson’s autism treatment we meet bi-monthly with our top team in the program. This is 1 hour of time that I get 6 times a year with the head Psychologist in charge of Grayson’s program. And, I value every moment of this precious time.

I go to each meeting prepared with lists and talking points and clear objectives. We start by running through high points and low points of Grayson’s general progress and then we begin to dive deeper into specific behaviors. We brainstorm interventions and we talk about how Grayson’s symptoms will continue to change as he gets older and his speech continues to develop. And once we have laid out a plan we end the session with casual niceties and I head back out into the world. I punch out of my job as autism manager, I guess as much as anyone can punch out of that job, and I go back to work at my professional job and my daily job as “mom”.

And that is how those meetings go. Well, until yesterday. Yesterday, for the first time in 18 months (9 treatment reviews)  I let go of my need to be in control and regimented and professional and I burst into tears.  The tears came from a place so deep that I just could not find the off switch.

I apologized through my sobs. I knew that the people in this room were unprepared for me to show so much emotion. Not because it was inappropriate, because I am sure thousands of other parents come into that office and cry every day. They were unprepared because I had never done it before. They were used to me being all business.

I could see their eyes on me. I could feel their sadness for me. And, I could hear the empty silence. I knew that all four of them, women, mothers, and people who genuinely care about my son were feeling and sharing in my pain.

You see, right before I started crying I finally said something out loud that had been weighing heavy on my heart since our IEP meeting the week before. I said something that no parent should ever have to say. I looked down into my lap and told these women that the children in Grayson’s class were already deciding that Grayson was different. And because they did not understand his difference, and because it scared them sometimes, they were already backing away from Grayson. I shared with them what the IEP team shared with me: “We need to help Grayson now so that this does not impact his long-term social interactions.”

How could this be? My 4 year old and his 4 year old peers already understood enough about difference to decide that Grayson was too different to fit in. And, that is a thought that is just too heartbreaking.

So, I cried.

And when I was done crying the psychologist looked at me, as a mother and not as a professional and said this: “I know this seems sad and hard and every one of us feels your pain even though we cannot understand it the way you do. Use this. Use this experience and this information to continue spreading the word. If the world does not understand Grayson, help them. I know that you have the power to do that.”

And because she told me to…and because he needs me to…that is exactly what I am going to do. Difference and acceptance and tolerance and understanding and peace and love. Because nothing less will do.

JS

Nothing in our life is immune to autism. It surrounds everything that we do. It is loud. It is unforgiving. It is steadfast and resilient. It is always there. At times it is idle. It disappears into the background. In certain moments I may even allow myself to forget that it is there. And just when I begin to feel comforted by the absence of autism; there it is.

The autism comes and goes at is pleases. It crawls inside of our most precious moments. It grabs ahold of anything and everything within its reach. It is unapologetic. Ever changing. Ever demanding more. More time. More money. More energy. More of everything we have to give. And then more, even when we run out of things to give. More than I am. More than I ever thought I would need to be. More.

Autism is a part of every single piece of my life. It happened slowly at first, and then all at once. In the beginning I put autism in a box. I thought that I could just keep it there. I thought that I could be in charge of when and where autism would infiltrate our lives. I was wrong. You cannot keep autism in a box. Sure, you can choose to put it inside of a box, but it will not stay there.

Autism goes where it wants. It burrows into the deepest parts of you. It becomes a part of who you are. It becomes a part of your identity. You lose the ability to separate autism for any part of your life. It changes you in ways that you never imagined it could.

And after this happens it is natural to resent the autism. How dare it be so bold to take over every piece of my life? Taking over my son wasn’t enough?

I do not have autism. I can understand and control my emotional responses. I know how to appropriately match my emotions with the context of the world around me. I understand how to behave in a way that is expected and socially appropriate. I am in control of myself.

My son is not. My son has autism. My son does not understand his emotions. He struggles to understand the context of the world around him. He is unable to adjust his emotions to be expected or socially appropriate.

His autism is a giant that we go up against every single day. We look in the face of something that scares the crap out of us and we figure out new ways to come out ahead. We ask questions that we are not prepared to hears answer to. We look into treatments for symptoms that we do not fully understand. We put our faith and trust in people who barely know our son.

We take this journey one step at a time. Sometimes the steps are tentative and filled with fear. Sometimes the steps are sure and filled with certainty. And a lot of the steps are somewhere in the middle.

This journey along the autism spectrum with my son has taught me a lot of things. One thing I have learned is that I have to find a way to live in the middle. In the middle of fear and certainty. In the middle of optimism and negativity. In the middle of hiding and exposed. The middle or victim and hero.

In the middle I am safe. I am moving forward. I am focused. I am strong enough to fight if I have to, but cautious enough to look for the answers in other places first.

In my weaker moments I leave the middle. I go somewhere else. Anywhere else. In those moments, for any number of reasons, I need to feel something different. I need to feel the intensity of the fight. Or, I need permission to completely retreat. I need to be a hero. Or, I need to be a victim. I need to believe I am moving mountains and making progress. Or, I need permission to accept that I am powerless to impact change.

In those moments I need those things because that it what happens along this journey. You may be existing peacefully and contently in the middle, and then in an instant something shakes you to the core. Something propels you to the front line to fight like hell for your child. Or, something triggers the impulse to crawl up inside of yourself and hide away from the world. This journey pushes you to those extremes.

And in those moments you go where you need to go to survive. And then one step at a time you fight your way back to the middle.

Autism came into my life and changed everything in ways that I was not prepared for. It is an unwelcome presence in our life. But we know that autism is not something that is going away. So each day we try a little harder to work towards acceptance. Each day we learn a little more about taking back control. Each day we are more. And being more allows us to give more.

I am not a hero. And, I am not a victim. I am just in the middle doing the best I can to be enough. To be more.

JS