A Letter to my Beautiful Boy on his Birthday.

My beautiful, strong boy. I am not sure how it is possible that you are 5 years old.  I blinked my eyes and here we are. And while I sit here is disbelief that 5 years have passed us by, my heart knows that we have lived every single moment of those 5 years.

We have celebrated the wins. We have endured the pain. We have called on each other to be so much more than we thought we would need to be. And one day at a time we have walked this journey.

On May 1, 2012 you entered our world exactly on your due date. Just as scheduled. Just as planned. It was the first and last time you ever did something according to plan.

Well, according to my plan.

The past 5 years have taught me that you are unrelenting in pursuit of your own plan. A trait many might say you got from me. You see your plan so clearly. You approach every moment of life with such a profound courage and conviction. You see the world the way you need it to be. First you see it in your head and then you set out to recreate that world.

I have not seen a single hurdle you are unwilling to climb. A single barrier strong enough to keep your willful spirit at bay. You charge into the world fueled with determination and intention. It is a force to be reckoned with. You, my beautiful boy, are a force to be reckoned with.

Sometimes life is frustrating. You do not understand why things are not always what you need them to be. You push harder. Sometimes watching you push so hard makes me feel proud. And sometimes it makes me feel sad. And sometimes watching you push makes me feel afraid.

Your intensity is unwavering; and that can be hard to watch. Sometimes it is scary.

I want so badly to wrap my arms around you. To tell you that we will try again another day. But, it is hard for you to walk away. It is hard for you to forget. It is hard for you to move forward. You stay frozen in that moment. Until everything is just the way you need it to be.

It is safe to say that you teach me more about life and love every single day. It is also safe to say that I love you a little more every single day.

I love the way your smiles radiates through a room. The way your giggle electrifies the world. I love the way you entertain us with your humor and your sarcasm.

I love your intuition. Your instincts. Sometimes I watch you on the trail of a discovery and I am amazed a just how well you read every situation you encounter. The way you walk into the room and immediately catalogue everything around you. The way you respond when something is off. The way you explore and investigate. The way you arrive at timely and thoughtful conclusions.

I love your unrelenting spirit. Your commitment. Your ability to work an entire room without breaking a sweat.  You are a master negotiator. You know how to close a deal; and you usually come out on top.

I love the way you capture the hearts of everyone around you. The way you captured my heart. The way you capture and recapture my heart every single day.

I wake up every morning and promise myself that I will give you my very best. And I promise that I will empower you to be your very best too. And sometimes we go off-track. Often we are less than perfect. Many times our “best” slips away in the grind of our everyday struggles. But we guide each other back.

Together we have walked this journey through the first 5 years of your life. And together we have learned that perfect is boring. And we, my sweet boy, are anything but boring. We get it wrong. We commit to work a little harder. And through hard work and lots of love we eventually get it right. We are forever a work in progress.

I know that there are more lessons to learn. And more lessons to teach. I know that there is more love to give. And more love to receive. I know that there will be challenges and obstacles. But I also know that there will be big wins. Monumental celebrations. More signs of a journey well-traveled. A life well-lived. A boy well-loved.

I wear each of your birthdays as a badge of honor. A victory won. A step away from the obstacles of the past year. A step forward.

5 years ago I gave you life. And in every moment since then you have given so much wonder and purpose and love to my life. And here we are on the brink of another year. A year that will surely be filled with love and success and surprise and challenge and fear and pain. Because life is all of those things.

Never perfect. Never boring. Just beautiful, messy life. Your life. Happy birthday to my beautiful boy.

Mommy

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Too Many Things I Will Never Know About My Son’s Autism.

Each day I have a deeper understanding of just how little I really know about my son’s autism.

I am not talking about symptoms and treatment options. I know those things. Those things are easy to learn. I can read them in a textbook or talk about them with a doctor.

But there other things that I do not know. Other things that I will never know.

I will never know how it feels for my son to experience life with autism. I cannot hear sounds the way he hears them. I cannot see color and light the way he sees them.  I cannot experience touch and feelings the way he feels them.  I cannot interpret words and phrases the ways he interprets them.

I live in a constant state of wonder. I wonder about my son’s world. What does it look like? Sound like? Feel like?

When I close my eyes I try to imagine his world. In his world I know that everything has a place and a purpose. There are no senseless rules. No social guidelines. No need for unnecessary words and sounds. No extra fuss.

I want to imagine his world as a simple place. Quiet. Happy. Peaceful. But, I cannot see it that way. Because my son does not live inside of his world in a bubble. He lives inside of his world, inside of our world. And that is anything but simple.

Each day my son sorts through all of the pieces; pieces of his world and pieces of our world. He learns the ways that they are different. And, the ways that they are the same. He learns each of the pieces inside and out. And then he tries to put them together.

Together, but never really whole.

Because there are pieces from his world that do not work in our world. And there are pieces of our world that do not work in his world.

I see this play out every day as he lives his world inside of our world.

Something as ordinary as getting a haircut is anything but ordinary for my son. Getting a haircut is extremely difficult.  He does not like anything about it. The sound. The touch. The lack of control. Getting his haircut causes a physical reaction. His body tenses. He sobs real tears. He winces in fear in anticipation of each cut. He fights every snip. He loses the ability to breathe and calm down. We cut his hair 10 seconds at a time. We cut the hair away from his eyes and out of his ears. We cut until we cannot endure anymore. And then we stop. We hold him in our arms and we help him calm down. Often he is angry with us. He wants to hit us and push us a way. And we understand that. So we give him the space he needs.

Getting a haircut is just a part of our world. But is does not work in his world. In his world it is terrifying. In his world the sensation of hair touching his skin is painful in a way that we have never experienced pain. And I do not know that because I have experienced it myself. I know that because I have watched him experience it. And as I watch I am reminded that I will never know what it feels like for him.

And just as he struggles with the activities of our world; he struggles with the words in our world too.

He cannot understand our rules. At school he is told that he cannot go into the girl’s bathroom because the girl’s bathroom is for girls only. But in our life at home he comes into the girl’s bathroom with me all the time. He cannot understand the contradiction. His black and white world cannot process the “exceptions” to the rule. The rule does not make any sense to him. And who is going to follow a rule that they cannot understand? So he runs. He makes a game of going into the girl’s bathroom. He is laughing, but he is not laughing at our expense. He is laughing at our rule. Because our rule does not make sense to him, and he thinks we are pretty funny to have such a stupid rule.

But rules are a part of our world. And even though our rules do not make sense in his world; he must learn to live by them. And so we will teach him to live by them.

I am here. I am sitting right next to him. I am holding his hand. I am rubbing his back. I am squeezing him tightly. I am rocking him in bed. I am singing softly to comfort him. I am backing away. I am giving him space. I am observing his actions. I am protecting him. I am protecting others from him.  I am listening to his words. I am helping him to find the words he cannot find on his own. I am explaining things that do not make sense to him. Things that do not always make sense to me.

I am here beside him, but that will never be enough. I will never know all I want to know about my beautiful boy and his beautiful world.

I will never experience life the way my son does. And he will never experience life the way I do. And here we are. Beside each other. Two people from two different worlds learning to live together. Together, but never really complete.

JS

“Faith is seeing light with your heart when all your eyes see is darkness.”

-Barbara Johnson

5.4

Parenting: The Deep Dark Hole for Coherent Thoughts

I am going to be completely honest with you. This morning I wrote the beginning of ten different blogs without successfully stringing together more than two sentences for a single one of them. I sat down with clear intentions and topics. And every single attempt crashed into a brick wall.

Why? Because this morning my kids are on a mission to capture and destroy all of my remaining brain cells. A mission that they attacked with vigor. And while I cannot get them to commit to a breakfast selection or a television show; their commitment to this mission was unwavering.

Parenting is a marathon with no finish line. It is the biggest and most important job that I will ever hold. It is filled with so many moments of pure happiness. Smiles and laughter that truly light up the world all around me. Big moments filled with pride and joy. Little moments filled with love. Being a parent is the single most joyful experience of my life. And it is also the hardest thing that I have ever done.

It is hard in ways that I could not imagine. Ways that I was not prepared for. It requires patience and strength and endurance. It is choosing to put someone else before yourself every single day. It is accepting that you will begin to look at life as “before” and “after” becoming a parent. It means that things change. And then they change again. Sometimes they change 97 times before breakfast.

By 9am on most weekend days we have completed a full day’s worth of activities. We have colored and crafted. We have played games and puzzles. We have attempted three or four different breakfast options. We have played dress-up and pretend. We have watched the first four minutes of five different television shows. We have played on the IPad; which really means we have just argued about who gets which iPad and how loud the sound is.

And as the little humans in my life chant “mom, mom, mom, mom, mom” over and over I find myself digging deep inside to keep pushing forward. It is amazing how the sweet little sound of their voices is both the most beautiful and most obnoxious sound that I have ever heard.

On any given day I microwave my coffee five times before I give up on it all together. And as I hear myself talking I can barely stand the sound of my own voice. Not that it matters because the second I open my mouth to attempt a coherent thought to my husband; someone interjects with a request for yet another breakfast option or help wiping their butt.

My husband and I have mastered the “we will just talk later” nod. Except later rarely comes. Because later we are exhausted. Once all of the cooking and cleaning and refereeing and butt wiping is done for the day; we are too tired to be charming or witty or productive.

And do not even get me started on the lost luxury of sitting down. Sitting down is not an option in this house when the little humans are awake. It is as if an alarm sounds throughout the house the moment I attempt to sit down. The exact instant I sit down one of my children wails from the distance. Probably some really pressing need like helping to find the milk cup that is sitting right next to them or answering the same question I have answered a million times before.

No one tells you before you have children about the real body aches you will feel at the end of the day. My ab muscles are actually sore from the number of times that I bend down to pick up the same toy. My legs throb from the number of trips I make around the house cleaning and chasing and gathering. My husband and I crawl into bed at the end of most days and marvel at the literal “pain in the ass” that this parenting gig can be.

Anyone who knows me knows that I love my children. But you know what else I love? Having a full and complete thought. Drinking a hot cup of coffee without the stale taste of microwave burn. Easing into the day with a little quiet adult time in the morning. Sitting down. Silence. I really like silence.

But those things go away when you become a parent. And do not get me wrong, you get lots of wonderful things in return. You get the unconditional love and adoration of your little humans. You get that warm feeling when your little human curls up next to you and asks you to snuggle. You get the overwhelming sense of pride when your child does something amazing. You get to feel like a super hero when you come in and save the day.

I love my kids so much that I drink stale tasting coffee every single day. I love them so much that it actually hurts. Like actual literal physical pain. I love them so much that it makes me a little crazy. Just ask my husband.

So today I was going to attempt to string together a few coherent thoughts about something that I cannot even remember right now. But I live with little humans who successfully completed their mission to capture all of my remaining brain cells. And I cannot even say with any level of confidence that there were that many left in the first place.

So congratulations little humans. You win the day. Now excuse me while I go microwave my coffee.

Jessica

(Or at least what is left of her…)

4.29

Why I Stopped Apologizing for my Son’s Autism.

In the beginning of my son’s autism diagnosis I felt the need to apologize all of the time. I apologized for my son’s behaviors and the way they impacted other people. I apologized for the nosiness of our life. The chaos that follows us everywhere we go.  I apologized for the abrupt way we exited events and social gatherings. I apologized for the adult conversations that I could not focus on. For the time I no longer had for the important relationships in my life. I apologized for being so consumed by autism.

I apologized for a lot of things. Things that I could see and feel happening all around me. Things that I wanted so desperately to wrap my arms around and control. But the truth is that most of the things I apologized for were things not within my control.

I thought that I needed to apologize. I thought apologizing was a way of acknowledging my awareness of the way our life was different from other people. I thought that people needed me to apologize for our noise and chaos. I thought that being different, and having a child who was different, was something that I needed to be sorry for.

I was wrong.

Learning to embrace the difference in your life is a process. It does not happen overnight. And the process is different for everyone. I got it wrong for a long time before I started to figure it out. Getting it wrong was part of my process. And it took getting it wrong for me to understand how to get it right.

I went on apologizing for a long time. Often not even realizing what I was apologizing for. It became an instinctual response whenever noise or chaos entered my life.

One day while at a party with other families I heard a child start to cry from the other room. I ran into the room certain that my son had pushed or hit the child. As I made my way towards the room I began planning my exit strategy in my head. First I would apologize to the parent. Then I would gather our items and quickly load everyone into the car. Then in the safety of my car I would turn the music up so that my children could not hear me as I sat sobbing in the front seat.

When I heard the child at the party screaming the exit strategy came to me quickly. After all, this was not our first encounter bolting from a party. We felt so ashamed of the noise and the chaos in our life. So we apologized. And then we ran away.

Imagine my surprise as I entered the room with the screaming child and my son was nowhere to be seen. I started moving quickly through the house trying to locate him. As I turned the corner into a room at the front of the house I saw him sitting quietly on the couch with his milk.

The guilt washed over me fast and furious.  Guilt for the assumption that my child was at the center of all of the noise. The center of all of the chaos.  Guilt for my immediate reaction to pack up and leave. Guilt for my need to apologize for the things that I could not control. Guilt for getting is so wrong. Guilt for not knowing a different way to navigate through this journey.

I let the guilt run through me. I needed the guilt to help guide me to a better way. A better strategy for managing the noise and the chaos. A better way to acknowledge and embrace and navigate the difference in my life.

My guilt helped me recognize that I needed to stop apologizing. And, I needed to stop running away.   I needed to be aware of the behaviors without feeling ashamed of them. Of what they meant about me as a mother. And what they meant about my beautiful boy.

I needed to stop, breathe, and fight the urge to run away.

I do not apologize for my son’s behaviors anymore. The behaviors still happen; that part has not changed. But one day at a time we are changing the way we let those behaviors intersect with our life at home and our life out in the world.

Sometimes my son hits and pushes. Sometimes he yells loudly. Sometimes he slams doors and throws things. Sometimes he breaks things. Sometimes he is disruptive and intrusive to an activity or event. Sometimes he takes attention away from other things.

These behaviors are a part of our life every single day. But we no longer call attention to them by apologizing and running away. These behaviors used to be in control; and now they are not.

We are calmer and less reactive. We extinct and redirect. We take deep breaths. We stop and take a minute to collect ourselves. And when we are ready; we start again.

I used to apologize and run away because I thought it protected us. I thought it kept us safe from what other people may think about my son’s autism. I thought it was the only way I could control something that felt out of control.

But, I realize now that apologizing and running away sent a message to my son that his autism was something to be ashamed of.  That is was something I was ashamed of. Something I wanted to hide away. Something that we could not let other people see.

I was wrong. I am not ashamed of my son. I do not want to hide him away. So, I stopped apologizing. I stopped running. I learned how to acknowledge the difference in our life without feeling ashamed.

Sometimes we get it wrong. And then we get it right. It is a journey that does not end. A love that knows no bounds. Something you never have to apologize for. Something you should  ever run away from.

JS

“Accept everything about yourself – I mean everything, You are you and that is the beginning and the end – no apologies, no regrets.” 

– Henry Kissinger

4.17

She Used to Be Me

she used to be meI knew a person who saw her future so clearly.  Visions in her head of a life full of simple joy.  And there in her visions she was so sure of who she was. She was strong and confident. Her unwavering energy was infectious to everyone around her. She took care of herself. She was fresh and rested and ready to approach every day with comfortable certainty. She was bold; without being overbearing. Cautious; without being reserved. Wandering; without being lost. And there in that life she felt secure and in control; her footing strong and her focus steady. She was ready for anything that came her way.

I knew this person well. She used to be me.

But life has a way of becoming something very different than what we expect it to be.  It gives a little, and sometimes it takes a lot. And slowly we start to change. Day by day, and piece by piece, we become the people that our lives needs us to be.

My life has certainly been different than I expected. I have said goodbye to things that I was not ready to lose. To ideas and visions of a different life. A life with less pain. A life with more certainty. A life filled with the comfort and security that I craved. Less heartache. Less fear. Less doubt.

After my son’s autism diagnosis I mourned the loss of a different life. Not better or worse; just different.  I mourned things that had never really been mine. Things that were just visions and ideas and hopes for the future.  And although they were never really mine; I felt entitled to them. And when they were gone I mourned them fiercely.

Through my mourning I have come to understand that life is one big give and take. We are given things, and things are taken.

I was given the most amazing child to grow and love and nurture. And, none of the things that have been taken along the way can compare to that gift.  So, day by day, and piece by piece, I am learning to embrace this journey. I am becoming less of who I was before autism and more of the person I need to be to walk this journey with my son. My incredible gift. A gift worth changing for.

I will not tell you that these changes have been easy. The truth is that this journey brings me to my knees most days. My head fills with fears and doubts about the road ahead. I question my own strength. Because I know that I am strong, but I know that autism is strong too. And it is so much stronger than I want it to be. It matches me blow for blow. And when I go to my knees feeling tired and weak; autism stands strong. It is unrelenting that way.

So I do what this journey has taught me to do; I stand up. I find more strength. More energy. More will to fight another day. I become what I need to be to survive. I become a version of strong that I never knew existed before autism.

I am very different today than the person I was before diagnosis. The person I used to be could not survive this journey. So, I became someone who could.

And sometimes that means I am things that I never imagined being. Sometimes I am unsure of myself. Sometimes I am scared. Sometimes I am exhausted, and I say “no” when I want to say “yes”. Sometimes I am chaotic and unscheduled. Sometimes I am uncomfortable in my own life. Sometimes I am overbearing. Sometimes I am reserved. And sometimes, I am lost.

And somehow despite all of the ways I am different; I still find a way to be ready for this life. Ready for the journey ahead. Embracing life for all of the predictable uncertainty that will cross my path. Because along this journey; the only thing that is certain is that nothing is certain.

I used to be someone different. She was on a different journey, at a different time, with a different purpose. It was easy for her to be brave and confident and unscheduled. Carefree and optimistic about her journey through this life. She used to be me. And, sometimes, I miss her.

Autism takes things. And, it took her from me. And even though she was so many things that I hoped to be; I had to let her go.

I was given my son. The most incredible and spirited and willful little boy. And he is mine. And for him, I became someone different. And together we walk this journey.

JS

10 Autism Lessons You Will Not Find in a Textbook.

lessons 2.jpgWhat I knew about Autism two years ago was textbook at best. I knew that Autism is a sensory processing disorder and that symptoms often present in young children. I knew that prevalence is higher in boys than girls. I knew of the common symptoms such as rocking, speech delays, rigidity, and social implications. I learned these things from a textbook in college.

What I know about Autism today is vastly different. Today my information comes from the front line as I stand beside my four-year-old son with Autism Spectrum Disorder.

My autism education in an on-going process. I learned many things right away; survival tactics if you will.  Other things trickled in more slowly as we began navigating the spectrum.  And there are many things that I am still learning.

I keep these lessons close to me. I use them to navigate our journey forward.

These lessons do not come from a textbook. They come from the head and the heart of a mother standing beside her child. Learning. Surviving. Embracing the spectrum.

Lesson 1:   You will never know what Autism feels like. I need my son to show me his world; just as he needs me to show him my world. But we are both just visitors in each other’s world. And, living in a different world from your child is unnatural and scary. But that is what parenting a child with autism is like. We are both trying and struggling to exist in a world that is unfamiliar to us.

Lesson 2: Autism sees no boundaries. Despite all of your defensive efforts autism will spread into every corner of your life. That is ok. It is better to know that it is everywhere than to wonder when and where it may appear.

Lesson 3:  Choose your team wisely. You cannot walk this journey alone. Surround yourself with people who will build you up and make you stronger.

Lesson 4: Symptoms and behaviors come and go. And sometimes, when you think they are gone…they come back. This is just a fact. You can strategize and extinct and redirect until you are blue in the face. Sometimes behaviors will go away. Sometimes they will stay away. Sometimes they will come back.

Lesson 5: Stop apologizing! You do not owe anyone an apology. Not for the behaviors of your child. Not for your own struggle to hold it all together. Not for the appearance of your house. Not for the unanswered text messages. Not for the doubts and fears that live inside of your heart. If you keep apologizing then you will keep believing that you are doing something wrong. You did not choose this path; you were chosen. Stop apologizing!

Lesson 6: Everyone needs a break from time to time.  Breaks are not a sign of weakness. Breaks are the way we lift our heads high and live to fight another day. It is easy to get caught up in the schedules and the treatment hours and the progress. Sometimes I look at my little boy and wonder how I ask him to do all he does each day. So I divert from the schedule, and I give him a break.  And, I give myself a break.

Lesson 7: If you have a power struggle with autism; you will lose. Your child is not in control, you are not in control; autism is in control. Pick your battles. Care less about controlling the autism and care more about controlling your reaction to autism.

Lesson 8: Do not let yourself be fooled by a good day or week or month. There will be harder days ahead. Find a balance between optimism and reality. Be unapologetically optimistic when things are going well.  CELEBRATE! You and your child put in a lot of hard work and you deserve the good days. But, while you celebrate keep your mind and your heart ready. Stay focused and prepared for the harder days ahead.

Lesson 9: Some of the pieces you love the most about your child may be the autism. You have to take the bad with the good. And believe me, there is plenty of bad. But there is so much good too.  I love the careful and methodical way my son looks at things. The way he sees through to the core of everything. I love the way he guards the words “I love you”. He seems to know exactly when I need to hear them the most. I love the way his energy changes when he feels safe and secure snuggled next to me. I love the way that he catapults himself into the world; oblivious of his crash landings. This are pieces of him. Pieces of his autism.

Lesson 10: This journey is a marathon and not a sprint. There is no prize for getting to the finish line first. Why? Because there is no finish line. Autism is a journey that has no end. It takes you to the point of defeat and then it pulls you back. It shakes you to the core and then wraps you in a gentle and familiar hug.  It is your villain and your hero. Your sentence and your pardon. It becomes the only thing you know to be true, and there is a comfort in that unexpected certainty.

These lessons are my keepsakes from this journey. Proof of obstacles overcome. Testaments of triumphs and defeats.  There is so much more to learn. So much of this journey still lies ahead.  So many obstacles. So many triumphs. So many defeats.

But each day I step into this journey a little wiser. A little more filled with the lessons I have learned along the way. A little more ready to face the road ahead.

No, I did not learn these lessons in a textbook.  But they do represent something that is real. The quest. The pain. The perseverance. The power of love.

JS

Finding a Voice for Autism: Let’s Talk About Things That are Real!

People struggle to talk to each other about things that are difficult. It is easy to talk about things that are on the surface. They are easy to see. Easy to define. Easy to relate too.

The deeper things are harder. Harder to see. Harder to define. Harder to relate to. And so we struggle to connect ourselves to the deeper things inside of the people we are close to.

We spend our time worrying about saying the right thing.  We fear that we may say the wrong thing. And too many times these worries and fears result in saying nothing at all. But, the empty space of silence speaks volumes. It feels louder and more painful than any of the wrong things that may have been said.

I know in my own life I have struggled to find the right thing to say to the people closest to me. I know that have been fearful of saying the wrong thing.  I have allowed an empty silence to form between myself and the depths of the pain and struggles of people I love.

And the reason is quite simple; silence felt safer. I told myself that silence was safer for me and for the people close to me. I let myself believe that. Believing that protected me. And, I thought it protected the people that I loved too.

And then something happened that changed my belief. Changed me.

When my son was diagnosed with autism I felt the silence. I saw the pain and fear and heartbreak that slowly filled the hole of silence between myself and the people who could not talk to me about my life. Not just my surface, my real deep down life. The silence grew louder and louder. Too loud.

And then after the noisy silence, there was nothing left. The space was too big. The silence too. vast. The unspoken works too many.

The truth is that silence is not safer. It is easier. It is more comfortable. It is simpler. But, it is not safer. Because when we cannot talk to the people we love about our lives in a real and authentic way, we are not safe. We are hiding. We are avoiding. We are concealing. But, we are not safe.

I learned quickly that people needed me to give them permission to talk to me in a real way about my son’s autism. I learned that it would be my job to sort through all of my own uncertainty to help other people navigate this journey alongside us.

This  felt daunting in the beginning. It made me angry that I had to put my own pain aside to help other people talk to me. I heard people circle around the subject and somewhere inside of my head I sat screaming “JUST ASK ME!”

As time moved forward I took a more proactive role. I found my voice.  I knew that I both needed and wanted to talk about autism in a real way. So I initiated those conversations. I gave the permission people needed to talk to me. I found my voice to speak up when I was not comfortable with something. And one conversation at a time I worked together with the people in my life to talk about autism in a real way.

The reality of this journey is that very little is left unchanged. Many relationships have changed. Some relationships have ended; for a million different reasons. Some relationships suffered from the empty silence. Some relationships could not handle my need to talk about autism in a real way. And some relationships ended for no good reason at all. And, just as we have learned that things change along this journey, we have also learned that some things end.

I understand the fears you may have to talk about things that are real. I know that you are worrying about saying the right thing. I imagine you are fearful of saying the wrong thing. I recognize that it feels safer to say nothing at all.

I want you to know just how loud the silence is. Just how much it hurts.

Find a way to talk to the people you hold dear about the real things in their lives. And the real things in your life. We need to give each other permission to talk about the things that are deep inside of us. To trust each other with the things that weigh heavy on our hearts.

To remove the worry. Remove the fear. Remove the silence. To give words to things that are real and hard. To set them free. To set ourselves free. To truly be safe.

JS

091

 

The Day My Son with Autism Crawled into a Box.

Today I went to my son’s school to participate in his science experiment presentation to his class. As my husband and I walked into the school I recalled the countless times in the seven short months since 4K began that I walked these halls. Orientation, parent teacher conferences, more IEP meetings than I can count, concerts, forgotten shoes, and early pick-ups. This was a place I would come to know very well over the course of my son’s education.

Today I walked down the hall excited to share a special day in the classroom with my son. As I walked into the classroom I saw my son. He was sitting on the floor in a cardboard box. While the rest of his class played together outside for recess, my son sat in the classroom in a cardboard box.

I looked from my son over to his teacher. She saw the look of surprise on my face and explained that he was not happy with his place in the line-up for recess resulting in a meltdown. He became so worked up that he could not recover.

And, because he could not recover, he crawled into the box. A place where he felt safe.

There are a lot of moments as a parent that test your endurance; both physically and emotionally. I have experienced incredibly high moments and I have survived extreme lows. I have seen and heard things along this autism spectrum journey that should not be a part of any parent’s journey. But they are a part of mine. They are carved into my brain. They are burned into my heart.

And today, I just cannot see past the vision of my son sitting alone in the cardboard box.

You may be wondering why there was a cardboard box in the classroom. But all parents know that children can find joy in the simplest of things. The box becomes whatever they need it to be. A fort, a house, a treasure chest. Today my son needed that box to be a hiding place. And so he crawled in and hid from the world.

What they do not tell you after an autism diagnosis is that it gets much harder before it gets easier. And then after it gets easier, it gets harder again. They do not tell you the pain that you will experience over and over again each time that you are unable to help your child.

As my son grows older and his same aged peers grow older; I feel the presence of autism in our lives even more than I did at the beginning.

When my son was diagnosed at age two the concept of autism seemed so abstract. I could certainly see his symptoms with my own eyes. I lived those symptoms alongside him every day. But, most children at ages two and three develop at different rates. So, the differences between my son and his same aged peers were more easily muddied in the water.

Today the differences are crystal clear. I stand in the morning school line with my son and watch in agony as he struggles to make social connections with his peers. I watch as other children carry on two-way conversations with ease. I watch as my son drops words and phrases into the world. And his words land like rocks.

The children do not understand the way he communicates. And because they do not understand, they cannot communicate back to him. And I cannot help but relate to these young children, because I myself often struggle to understand the way that my son drops his words into my own life.

When most people hear the word “treatment” they think of something that helps you get better. But, I think using the word treatment to describe autism therapy is misleading. Because autism changes. It evolves. It expands and retracts. It goes up and down and then back up. It can be everything and nothing. But it does not get better. We get better. We get stronger. And we help our son to be better and stronger too.

Today I walked into my son’s classroom and saw something that I was not prepared for. After two years on this journey I am still not prepared for those moments. The moments that cut to the core of your heart. Because who can prepare for that? What experience in this world can help a mother prepare to see her child in pain?

The answer is simple; no amount of time or experience will make those moments any easier.

As I reflect on the moment now, I realize the irony of my reaction to the sight of my son tucked away in that dark box today. I did what I always do when I see my son struggling or in pain; I crawled into my very own emotional box. A box that I keep tucked deep inside of me. A box that is for me and me alone. There in the safety of that box I let myself heal. I hide from the world and the images that I am too scared to face. The sounds that I do not want to hear. I stay there in the comfort of that box until I am better. Ready to face the world.

And then I step out of that box inside of me and re-enter the world. Ready to move forward.

My son eventually emerged from his cardboard box today. Together we presented his science experiment to his class. He felt joy and pride as he held the spotlight in front of his class.

I may not be able to get the image of my son in that box out of my head, but I do understand it. My son went into his box to escape the world and he came out better. Ready to face the world.

This is one of the many things that I am learning from my son. Sometimes we need to crawl into a place where we feel safe. And come out when we feel better. Ready to face the world.

JS

GRAYSON J 4

Autism and Dental Hygiene

As I sat in the conference room of the pediatric dental office today, I could not help but remember the last time I sat in a conference room for something pertaining to my son’s health. It was just over two years ago at the conclusion of a long day of diagnostic testing. I sat in that conference room and learned that my son had autism spectrum disorder.

I knew that today would be different. I knew that we are just there for a dental procedure. I knew that I would leave here and my life would be relatively unchanged.  But I still could not help but wonder if my last conference room visit and this one were somehow linked. Is the autism diagnosis what brought us there today?

I know that dental work is a normal part of life. I know that there are some things in life that do not give way to age or gender or ability level. I know that hygiene is a part of life. I know that part of my job as a parent is to teach my children about personal hygiene. To help them learn to care from themselves. Just some of the many tools they will need to succeed in the world.

Despite the countless reassurances from the pediatric dentist and his staff; I find myself questioning the truth behind what led us there today.

Sure, teeth brushing and dental hygiene is not the easiest or best part of our day. Most days we need to use timers and social stories and praise just to get him to brush his teeth. Most days it is a game that is 90% play and 10% actual teeth brushing. Most teeth brushing sessions end with a meltdown as my husband or I inevitably take control and brush his teeth. This leads to inconsolable crying. Which leads to hitting and slamming and yelling. And when it is all over we rinse off the tooth brush and put it back in its place to do it all again the next day.

Teeth brushing is hard for us. Harder than it needs to be. But then again, a lot of things are harder than they need to be. But, we push through it because that is our job as parents. We do all of the things that our children need, even the unpleasant ones.

And despite our efforts. Here we are. Questioning if we did enough. Questioning if we let autism and the daily challenges we face get in the way of emphasizing the importance of this personal care.

I question myself because that is what this journey is. Day in and day out we question everything we do. We wonder if we have done enough. We imagine how we could possible do more. We are in a continuous pursuit for information. For answers to the questions that fill our heads.

When our journey lead us to a pediatric dentist specializing in children with special needs, I thought I would be comforted by the new information we learned.

I learned that a large population of the world is prone to decay causing enamel. I later learned that we have a prevalence of this in both sides of our family. I learned that the dentist can tell by looking at the decay if it was caused for environmental/life choices or enamel. I felt a ping of relief to learn that our son did in fact have the decay prone enamel.

This should have been a relief. But I have learned that there is very little on this journey that brings true relief. Because I cannot help but wonder if things were different, if he was different, would we still be here today. If autism was not part of our journey, how many difficult experiences could we avoid? How much pain could we avoid? How much more could we protect our son? Ourselves?

In my heart I know that my son’s autism journey lead us here today. Autism may not have caused the enamel, but autism is not innocent here.

Autism is the reason personal hygiene care is so difficult for us. Autism is the reason we struggle to tears many night to brush his teeth. Autism is the reason it took 4 years for my son to sit in a dentist chair. Autism is the reason that after sixty minutes at the dentist they were still unable to look in his mouth. Autism is the reason that I had to restrain my son with the help of three dental hygienists so that the dentist could take a look. Autism is the reason that my son has to go under full anesthesia to take pictures of his teeth and then take corrective action. Autism is the reason he woke up from anesthesia feeling out of control and scared. Autism is reason he looks in the mirror and screams at the site of the silver caps that do not belong in his month.

No, autism is not innocent. Each and every one of these things are the autism. I know that, and still I can do nothing to change it.

So I ask questions that I know will only hurt me. Questions about what might have been.  I imagine a life and a journey with less pain. For me, but mostly for my son. I know that asking these questions is normal. I also know that no good can come from it. I cannot turn back time. I cannot change the course of our lives. Our journey. His journey.

Our journey will test us time and time again. Today my journey called on me to explain something to my son that he could not understand. Today my journey called on me to rock my little man in my arms as he drifted off to sleep. Today my journey called on me to stay calm despite my fears. To take away his control despite his intense need to be in control.  To let people touch him despite his dislike for being touched.

There will be a lot of hard days along this journey. Today was a hard day. Today I remind myself of how far we have come. And how far we will go. I am stronger and more prepared to walk our journey because of data like today.  That might sound wildly optimistic. And maybe it is. I cannot control a lot of things, but I can control the way I embrace our journey.

Today was hard. A lot of things are hard.  But I am still wildly optimistic. Every. Single. Day.

JS

Brush Teeth

 

Becoming an Autism Mom.

I realized early on my son’s autism journey that I was going to have to become someone different.

I was always a planner. A person prepared and ever-ready to jump into action and solve unforeseen problems. In that way, this should have been an easy part of the journey for me. Except it was not. It was really really hard.

To be honest, nothing about this journey is easy. But, I have come to learn that it is better that way. It keeps me focused and alert. If things were easy then I could ease up. Lose focus. And then I would be unprepared. Too unprepared for this journey. Too unprepared for autism.

Learning to be an autism mom was a process. In the beginning I felt completely overwhelmed. Nowhere near the woman and mother I would need to be for this journey. To help push my son forward. To fight for my family. To survive.

I did not like feeling weak. Feeling out of control. I felt uneasy in those early days. Living each day with the knowledge that I was not strong enough. Patient enough. Faithful enough. Prepared enough. I was not enough to walk this journey.

That’s an empty feeling. And one I desperately needed to rid myself of.

But, where to begin?

I looked at all of the pieces of myself. And, I looked at all of the ways this journey would call on me. I searched for the place to start. The place to focus my efforts of becoming enough.

I told myself that strength and faith and courage would come with time. In that moment what I needed more than anything else was a plan. To be prepared. Informed. Ready.

So I did what always came naturally, I made a plan. I immersed myself in the planning. The scheduling. The rigidity and unrelenting nature of the treatment plan became my salvation.

People could call me weak. They could tell me to find faith. They could will me to be braver. But they could not tell me I did not have a plan.

The most important part of my journey to becoming and autism mom was accepting that so many things would be out of my control. Change and obstacles are constant on this journey. The journey is 30% planning, 60% adaptability and 10% dumb luck.

As I planned and adapted to obstacles I started to change. With each plan, and each obstacle, I grew stronger. And filled with strength I started to have faith that I could in fact walk this journey. And filled with strength and faith I felt the courage I needed to push forward.

And one day I woke up and realized that I was an autism mom. Prepared. Adaptable. Strong. Faithful. Courageous. Enough.

The truth is there is no “right” way to become something that you are not even sure you are “enough” to be. So just pick a place to start. And do not stop. Do not stop until you are enough. Because only you can define your own enough.

Now, I am an autism mom. I was an autism mom by definition the day my son was diagnosed (and earlier really). But it took a while for me to truly become an autism mom in the way I needed to be. The ways that really mattered.

I did not choose this journey, but I choose the way I respond to it. In the beginning, and still today. I choose to be enough. And for me, that is enough.

JS

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