The Gift

People ask, “what is the hardest part about having a child with autism.” And the truth is, the hardest part about having a child with autism; is having a child with autism.

Because it is all hard. In different ways and at different times. I cannot pinpoint one thing. One single piece of this journey. One moment of pain or struggle. One symptom. One behavior. One thing that we have lost along the way. One person we have lost along the way. One hurtful or insensitive thing said by someone we love. One way that we have changed and adapted our life.

No, I cannot pinpoint the hardest moment for you. Because in a way all of the hard moments and behaviors and people have become part of one big jumbled memory.

Autism is not neatly organized into clear and consistent traits and behaviors. It is not always easy to recognize or label.  Autism is not the same from day to day. It may not look the same or sound the same or feel the same. And the world, our world, where autism lives is not the same every day either. Autism is tiny little pieces of a million different things. And the pieces are constantly changing. Things that fit with ease one day may not fit the next day. And, pieces that you thought may never fit, all of the sudden fit together perfectly.

The fit is unpredictable. Because the pieces are unpredictable.  Because the journey is unpredictable. Because autism is unpredictable.

And that is hard in a way that I never understood before. To look at someone who lived inside of me. To know him so deeply in one moment. And in the next moment to feel so far away from him. To feel like a visitor in his world. To even begin to accept the idea that he and I live in different worlds.

And I know how difficult it must be for you to imagine what this feels like.

Pretend I give you a gift. It is the most precious and amazing gift you have ever been given. You love and cherish it in ways you never imagined possible. The gift becomes a part of your life; a part of you.

The gift is a blanket.

Beautiful and soft and welcoming and ever-ready to invite you into its warmth. It brings you comfort and safety. You wrap up inside of it and lose yourself a little. You begin to forget about anything that happened before the blanket. And just as you wrap up and start to live inside of the comfort of the blanket; it changes.

Now the gift is a picture.

Still beautiful, but no longer soft and welcoming. All of the sudden being snuggled up inside of the gift feels un-natural. Un-welcome. And because the gift has changed; you change. You interact with it differently. You hang it on the wall. You admire the way it ties everything around it together. As if maybe it was always intended to be that way. You can no longer wrap up inside of it, so you sit near it and admire its strength and beauty. It’s presence. The way it makes everything look different. And just as you can no longer imagine the room without the picture; it changes.

Now the gift is a balloon.

You are overjoyed to interact with the gift again. To hold it in your hands. You carry the balloon around with you everywhere you go. You admire the way it stands tall. The way something knocks it down, and it pops right back up. You see the balloon beginning to lose air. You worry about the balloon. And just as you drop your head in worry, the balloon escapes your grip. It sails up to the tallest corner of the room. And there it stays. Just out of your reach. As you make a plan to rescue the balloon; it changes.

Now the gift is a puzzle.

It takes hours to put the pieces together. Everything must be just so. As you manipulate the pieces you feel a mix of every emotion inside of you. You feel anger and frustration and joy and sadness and exhaustion. You consider quitting. You consider putting the pieces back in the box and storing them away on a shelf. You wonder if you are up for the challenge. But, you push on. And piece by piece the puzzle comes together. It is not easy; because nothing truly wonderful in life ever is. But this is your gift. And when you are given a gift, you just cannot give up on it.

How is it so? How it is that one gift can be all of these things? A warm and cozy blanket. A strong untouchable picture. A light and airy balloon just out of grasp. And, an intricate and complicated puzzle.

The answer is autism. Autism is all of these things and so many more. It is waking up each morning unsure of what we will find. Unsure of what gifts lie ahead of us that day. It is being ready for anything. Rolling with whatever comes our way. It is learning to look at our son with open eyes and a clear mind over and over again each day.

Pretend I give you a gift. The gift is complicated. The gift is unlike any other gift you have ever been given. But it is your gift. Your gift to love and cherish. Your gift to teach the world how to love and cherish it too.

I was given a gift. My son is a gift. And I love him. I love him when he is soft and comforting.  I love him when he is strong and rigid. I love him when he is present.  I love him when he is withdrawn. I love him when he is messy and complicated.

And maybe that is the real gift. Unconditional love.

JS

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Why I choose to be thankful for autism…

Sometimes I feel really angry when I think about the autism in our lives. But if time has taught me anything it is that spending too much time in the anger of it all does not do any good. The angry is such a lonely place to live. The angry is sad and isolating. The angry cannot look forward. It is frozen in the present.

And one day we decided we just did not want to live there anymore. Sometimes the present is just too hard. Sometimes all we have is the promise of a new day. A fresh start.

It is ironic that autism exists on a spectrum. Because my acceptance of autism exists on a spectrum too. It is not yes or no. it is not love or hate. It is not up or down. It is everything. Every emotion. Every state of mind. Every state of grief. It is a little bit of everything I have ever felt to every degree and every magnitude.

It is good things and beautiful moments. It is bad things and hard moments. It is feeling isolated from the world around us. It is feeling embraced and welcomed by the people we encounter. It is learning to find hope in the smallest gains. It is learning to recover from devastating set-backs. It is overcoming obstacles, only to start again. It is celebrating wins. Preparing for loss. It is agility in a way that I never thought I would need to be agile. It is being prepared in any moment for anything autism might throw our way.

Autism acceptance exists on a spectrum; and in a way I think we all live on our own spectrum.

A spectrum of hope and fear. A spectrum of dreams and reality. A spectrum of progress and setbacks. A spectrum of who we want to be and who we are.

The time in my life since my son’s diagnosis has changed me. There are things that I see in the way I live my life every single day. And there are other things, bigger things, that I am only beginning to understand. And while there have certainly been obstacles along the way; I understand that this is all a part of my journey.

And today, I want to say words to you that I could not have said at the beginning of this journey. In some ways, I am thankful for the autism in our lives.

I am thankful every day for the gift of motherhood. I am thankful for both of my sons and their unique and untiring spirits. I am thankful for the strength I have found along this journey. Thankful that day by day I believe in myself a little more. In my ability to navigate this journey. To embrace this journey.

I am thankful for the perspective gained raising a child with a special need. I am thankful that I can see the things in my life that are truly value. That day by day we learn a little more about the things that just don’t matter. I am thankful for the understanding my son’s diagnosis has given me.  The patience. I am thankful that I have learned to see the joy in even the simplest of moments. I am thankful that I have learned to pick myself up and rise up; time and time again.

I am thankful that I have been given the opportunity to share our journey. To talk about autism in a way that is real. Real and messy and unapologetically authentic. I am thankful for the strength to put our story out there. I am thankful for the healing that comes with that kind of vulnerability. And, I am truly thankful to the people who welcome us. The people who do not pass judgment. The people who seek a deeper understanding of our life. Of this journey.

I am thankful for the people who surround us. The people who pull us out of the isolation.  I am thankful for old friends. Friends who have walked alongside us. Friends who have shown forgiveness and understanding in our least graceful moments. I am thankful for new friends. Friends who came into our life after diagnosis and have embraced us without question. I am thankful for our family. For the four of us who live inside of our home. And for the much larger family that surrounds us even when we are not together.

It feels odd to be thankful for autism. It almost feels a little untrue. But I know that autism is all around us. It is in all of the big and little things that surround me.  I know that autism has changed me. That it continues to change me a little more each day. It is a piece of me. A piece of my world. And along my spectrum of acceptance and healing I choose to be thankful. I choose to rise above the anger.

Along a journey that allows for very little choice; I choose to be thankful.

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To the People We Cannot Protect

My son has autism spectrum disorder. I accepted a long time ago that a lot of the days along this journey were going to be hard. But sometimes I still cannot believe just how hard it is. Just how much we have to endure every single day. The obstacles and barriers and accommodations are never-ending. There is not a break or a rest. It is one moment at a time; every minute of every single day.

It is hard. And it is sad. And it is so incredibly lonely some times.

There are moments you try to prepare yourself for. But at a certain point you accept that you will never be ready for some of the things this journey will ask of you. So you toughen up. You take a deep breath. You stand taller than you feel. You give more than you have. You fight harder and faster and stronger than you want to. Because losing is not an option.

Parenting a child on the autism spectrum requires a kind of tough that I did not know existed before my son was diagnosed. I used to think that there was a limit to the amount of tough inside of a person. That at a certain point everyone had limits. That there was only so much pain and strife and struggle that one person could manage. That after a while it was just too much to ask of one person. And so the person reached their limits. They waved the white flag and asked for a break.

But, there is no white flag for autism. And, there are no breaks. There is just day after day. Obstacle after obstacle. There is achieving new and deeper levels of tough every single day.

Sometimes my son is physically aggressive towards other people. Sometimes he hits because he is happy. Sometimes he pinches because he is trying to get a reaction from someone. Sometimes he pushes because a loud noise scares him or catches him off guard. Sometimes he hits because he does not understand the feelings or emotions of another person. Sometimes the reasons for his physical behaviors make sense to me, but more often they do not.

And no matter the reason or cause for his behavior; sometimes he is physically aggressive towards other people, and sometimes  other people get hurt. And seeing that aggression is one of the toughest parts of this journey.

Today someone that we care about was hurt. Someone who we invite into our home. Someone my son considers a very close friend. Today she was hurt. Today my son hurt her. And I am sad. I am sad and frustrated and confused. I am so sad for our friend. Sad that she was hurt. Sad that she may not understand why. Sad that despite my nearly 3 years along the spectrum, I still do not have the words to explain this to her. I am sad for my son. For the remorse and confusion he feels. Sad for the anxiety he feels when we talk to him about his social behaviors. I am sad for my family. For the long and lasting impact autism will have on all of our relationships. I am sad for the people in our life. Sad that I cannot protect them. Sad that they need protecting. Sad that I feel sad.

And I am just so sorry.

I am sorry every time someone else is hurt along this journey. I myself feel hurt by this journey more often than I care to admit. And I am sorry to anyone else who experiences that alongside us.  

I am sorry for the physical pain. And I am sorry for the emotional pain. I am sorry that I cannot do more.  That I cannot protect you from the behaviors. From the autism.

I see you. I know what I am asking of you. I know that standing beside us means navigating something that you do not understand. Believe me, I know that well. I know that sometimes it means enduring the worst parts of the autism. I see you. And I am so incredibly thankful for you.

And, I know I already ask so much of you.  But I need to ask something else of you…

Don’t give up on us. Don’t give up on him. 

I know you do not know him like I do. I know you do not love and cherish him the same what that I do. But he is good. He is so good and sweet and wonderful. And inside of his beautiful messy brain he is trying to make sense of things. 

I promise you that I will work with him and talk to him every single day. I will never stop teaching him about kindness and being a good friend. And, it is only because of the incredible friends and family and support that surrounds us that I can show my son what to strive for.

I see you. And you see us. I am sorry. And you never ask me to be. Don’t give up on us. And I know you never will.

JSastro

Defending an Autism Diagnosis

IMG_6216Autism is complicated. High functioning, low functioning; a literal spectrum of symptoms and behaviors. My son has moderate to high functioning autism. He is verbal and integrated into a mainstream classroom. With the right amount of accommodation and support, he continues to expand his abilities.

My son’s autism does not look the way people may expect autism to look. And, sometimes that is complicated.

We are often told that our son’s behaviors and actions are “not autism”, they are just the same behaviors of other children his age. After all, all kids are wiggly. All kids struggle to listen. All kids struggle with social norms.

When people say these words to me, it stings. It stings way down in my soul.

We are different. And, different is hard. I get it; I really do. These words are your attempt to make a connection to me. To show me that we are actually quite similar. Because if my son’s behaviors are less autism and more typical boy; then you and I and our children are not so different after all.

But my son’s diagnosis is not about you. And, it is not about me either. It is about him. About his truth. His life. And, I have accepted that. It was a tough pill to swallow, but over time I learned to accept it. Because resisting it was holding me back, and it was holding my son back too. 

I accepted that my son has autism; that his symptoms are real. Not typical. And, now I need you to do the same.

When you tell me that anything “is not the autism” you prove just how little you understand this journey. In some way, on some level, to some degree, every single piece of our life intersects with the autism. Because some day, too long ago to remember now, the autism infiltrated every corner of our life.

There are no clear defining lines in this life. Everything blurs together. The autism did that. It took things, my things, out of neatly organized compartments. It mixed them all up, taking extra care to touch each and every piece of our life. And once everything was tossed around and mixed up, once everything was touched by autism, I could hardly recognize the pieces.

So we started from the beginning. One piece at a time we put everything back into a compartment. But everything was changed. Everything was different. Things did not fit the way they used to. Because after autism touches something; it changes. That is something I have come to know all too well along this journey.

You may not be able to understand that, and that is OK. I am thankful that you do not know this firsthand. But I do. And I need you to trust me.

It is the autism. It is all the autism.

I know that my son does things that are typical boy things. I know that my son does things that are typical five-year-old things. I know that my son does things that are typical brother things. But those things, those behaviors, do not exist inside of a bubble. They exist inside of my son. And, my son has autism.

He is a boy with autism. He is a five-year-old with autism. He is a brother with autism. And no matter how typical the things he does and says may seem; they are not typical. They are someone with a brain, very different from our own brains, working over-time to control the behaviors and sensory impulses that feel normal to him. Working so hard to mirror the typical behaviors of his peers. To be who he thinks the world needs him to be. And in those moments he is far from typical. He is exceptional.

Every single day he works on goals and behavior plans developed with typical and socially normal behavior in mind. And he sees that. His beautiful, brilliant brain knows exactly what is happening. And in so many moments of so many day he rises to the occasion. He does the work. He takes a step outside of his comfort zone to enter our comfort zone. And it is not fair. It is not fair or typical or just. Is it autism.

I could give you countless examples of all of the ways my son is not typical. All of the moments when he did not act in a typical way. But, I am not going to do that. I should not need to do that. I need you to trust me. I need you to trust me when I say that there are pieces of this that you cannot understand.

And, I need you stop telling me that my son’s behaviors are not autism.

I am not mad. I am not in denial. I am not frustrated or resentful. I am just a person on a journey that I do not understand trying to live my truth. Advocating for my son. Learning to take care of myself along this journey. And recognizing, that sometimes that means clearly asking for what I need.

So this is what I need; I need to stop spending time and energy defending my son’s diagnosis.  I need to take every bit of that time and energy and focus it on standing beside my son as we navigate his diagnosis together. As we move forward along this journey. One day at a time.

I hope we can all agree that is a much better use of my time.

JS

A Letter to Someone I’ve Never Met, Thank you for the Kindness I will Never Forget.

To Someone I’ve Never Met-

I have never met you. I do not know who you are. I do not know your name. I do not know where you live. I do not know your age or what year you are in school. I do not know if you have a lot of friends or if you prefer to keep to yourself. I do not know what you want to be when you grow up. I do not know you at all.

But there is one thing that I know about you. I know that you are kind.  And here, in this moment, that is all I need to know.

I am a mother and I work full-time away from my home. And sometimes that means that I cannot be everywhere that I want to be with my children. Over the past 4 weeks my son attended soccer practice through the local recreation department. Due to my work schedule I could not be there. I absolutely hated to miss practice. I am sure that a lot of parents feel the same way when they miss big moments in their children’s lives. But, that is just a part of parenthood. Sometimes we have to sacrifice big moments with our kiddos to create and provide a good life for them.

But it is hard to miss things, and when I am not there I worry. I worry because I am a mom. I am sure your mom will back me up when I say that the worrying comes easy to moms! 

But I also worry because my son is different from other kids. My son was diagnosed with autism when he was two years old. And every day leading up to diagnosis and every day since has been part of a long and difficult journey. The journey has not always been easy. We struggle with things that come easy to other people. Sometimes we have to miss out on activities and experiences because there are too many elements we cannot control.

Every day we are learning to be a little braver. Every day we step out of our comfort zone a little more. And 5 weeks ago I felt brave enough to enroll my son in soccer through the recreation department. Even though I knew I would not be able to attend practice with him.

That is how you came to meet my son.

And, that is how I came to know only one thing about you.  You are a kind person.

Over the past 4 weeks I have received pictures of my son at practice. And every single picture brings tears to my eyes. I see my son. Wide eyed and excited to play soccer with his friends. And I see you. Kind, compassionate, and truly engaged with my son. I did not know you could see compassion and kindness in a photo. I did not know that until I saw the photos of you and my son.

I may not ever meet you. But I am so incredibly glad that my son did. And I want to thank you. I want to thank you for taking the time out of your day to attend soccer practice with a bunch of rambunctious 5 year olds. And, I want to thank you for making a special connection with my son. Thank you for getting down on your knee to talk to him at his level. Thank you for repeating yourself patiently when he was wiggly or distracted. Thank you for breaking things down and explaining things simply to him. Thank you for showing kindness to my son.

And to your parents, thank you for raising an incredible son. Parent to parent, you have done an amazing job. Look at these pictures. Look at your son. Look at the kindness and the compassion and patience that is written all over his face. That is you. That is a gift you gave him. Thank you.

I am still scared to send my son out into the world. I know we still have obstacles and hurdles to face. But people like you put my mom worries at ease.

Thank you, from the bottom of my heart, thank you!

Sincerely-

Grayson’s Very Thankful Mommy

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Our Un-normal Normal

There are certain moments, on certain days that I forget just how out of the ordinary certain pieces of our life must seem to the world outside of our home. And the world inside of our home becomes a little more defined and nurtured and enriched each day as we journey forward. It is shaped by each of us.  By the way we interact together. We live together inside these walls… me, my husband, my sons, and autism.

There are so many unusual things that are just part of the way we do life. And some days I forget that these things are not a part of other families. I forget that many of the things that happen in our house do not happen in other homes. I forget how alarming they were when we first experienced them. I forget that our “normal” is anything but normal.

And maybe I forget because it makes it easier to navigate forward. Maybe I forget because forgetting is easier than remembering. I forget because forgetting helps me to embrace our normal. Forgetting makes our normal feel like a real normal. And normal feels good.

So I forget. But it only takes an instant to remember.

In just one instant it all comes rushing back. It only take an instant to remember just how un-normal our normal really is.

In that instant our friends sit in our kitchen consoling their young child who has fallen. I look onto them with concern as they wipe away tears. From the corner of my eye I see my son enter the room. I watch as he approaches the child. His movements are so soft. He slowly walks up close to the child. On the outside he looks calm. From across the room I look on in horror.  Because I know what happens next. I know he is not calm. I quickly move in. Midstride I see my son lift his hand and slap the child across the face.

I freeze. We all freeze.

The child cries even louder than before. The parents shift their focus from my child back to their child. I quickly usher my son away from them. We are all moving. But we are still frozen. Frozen in that moment. Frozen in all of the questions they want to ask. Frozen in the explanations I want to give. Frozen in all of the normal things that parents feel: worry, concern, love, compassion, and everything in between.

I apologize. I apologize because when your child hits another child, you apologize. No matter the circumstances. No matter the cause. No matter the diagnosis. I apologize for what happened to their child. And as I apologize I search my head for more words to say.

The thing that happens next is a thing that happens often on this journey. I set out to explain something that I do not understand.  I search for the right way to explain my son’s alarming behavior. An alarming behavior that has become a very normal part of life inside of our home. An alarming behavior that I know is anything but normal.

You see, when other children express intense emotion: laughter, fear, tears, my son hits them. He hits them, and I have no idea why.

I think he struggles to understand the emotions of others. I think there is an underlying sensory cause. I think maybe the sound is too much for him. I think he wants to quiet the noise. I think he believes that hitting is a solution to stop the noise. I think he know the words, but struggles to use them in the moment. I think he knows that words are better than hitting, but that logic escapes him when he feels overwhelmed. I think that is the sensory piece. I think he is confused. I think he experiences the moment differently than I do.  I think his behavior is driven by a need I do not understand. I think it may be driven by a need that he does not understand either.

I think a lot of things. But, I do not know anything.

I do not know what it is. I do not know where it comes from. I do not know why he does it. I do not know what need it fills. I do not know any of these things. Because I do not feel or hear or see or process things the same way as my son.

I do not know what it is. But I do know what it is not.

It is not my child being naughty. It is not a breakdown in parenting. It is not a lack of kindness. It is not bullying. It is not mean spirited. It is not a lack of love. It is not deliberate. It is not planned. It does not have an off switch. It is not something that I can punish or bribe or wish away. (Because believe me, I have tried).

It is a part of him. It is a part of his sensory processing disorder. And, in our house, it is something that we have learned to live with. We know to protect our youngest son when he is crying. We move through moments like this without missing a beat. Because if we miss a beat, our youngest son gets hurt. And that hurts both of our sons.

Because the moment is short lived. Because just seconds after he hits he is overcome with his on sadness and remorse. He is a sweet. He is nurturing. He is quick to show kindness to others. He sees a child fall from across the playground and will check on them fifty times before leaving. He is kind and compassionate. He makes real connections. He loves purely. Feels deeply. And he feels terrible after he hits someone who is feeling sad.

He cannot stop it. He cannot control it.  But, we are working on it every day. We read social stories about processing feelings and sounds and situations. Each day we work to understand his behaviors and the needs that drive them. And a lot of the time we move forward, but sometimes we move backwards to.

I can only imagine how the pieces of our life must look from the outside. But I do not live outside. I am here on the inside. Working hard. Pushing forward. Giving love. Teaching kindness. Learning to embrace this life and all of the un-normal normal that it is.

JS

 

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Dear Autism…

Dear Autism-

You came into our life without notice. An unwelcome and unrelenting force. You nestled yourself deep into the core of my family. Into the core of everything around me. You made yourself at home; in my home.

You take the things you want to take. You do not ask permission. You place challenge upon challenge along our path. You do not give us reason. You change direction and intensity out of nowhere. You do not give us warning.

But if I am certain of anything, I am certain of this; he is so much more than you. More than your symptoms. More than the obstacles you place in his way. More and bigger and stronger and braver than you will ever be.

It is easy to look at you and your presence in our life and say that it is all bad. But, that is not true. Because just as I know the wiggles and the behaviors and the speech limitations are you; I know there is more to you than that.

I know that you are his need to come close to me and gently rub his cheek up and down against my arm. I know that you are inside of the silly, often mis-timed, jokes he laughs louder than anyone else at.  I know you drive his hunger to know things. You engulf his beautiful brain. His tentative nature. His excitement. His joy. You engulf him.

I know that you are there. In the good moments and the bad ones.

You are somehow the best and worst part of our life. I hate you. And, I love you. I hate you for the things you have taken. And I, love you for the things you have given. I know that he could not be him without you. And so, I could not be me without you. Because he is a piece of me. And you are a piece of him. And in that way, you are a piece of all of us.

We have become dependent on you in that way. Your once unwelcome presence has become the only constant in our life. Your constant presence is the only way that you are predictable. The only true comfort you bring us.

We know that every morning when we wake up, you will be there. We know that as we struggle through our daily routines, you will be there. We know that in biggest most important moments of our lives, you will be there. We know each night when we sneak in to watch him sleep, you are there.

In so many moments of sadness and anger and fear I look over at him. But I am not looking at him at all. I am looking through him. Deep inside of him. I am looking at you. I am mad at you. I am frustrated with you. I am throwing my hands in the air and wanting to call you the victor. In those moments you have the edge. In those moments, you are beating me.

And then I stop looking through him. I look at him. I really see him. I see him without you. For just one moment I can separate you from him in my mind. And that is all in need to feel strong again. I stop looking through him to find you. I try to put you out of my mind altogether. In those moments, I am winning.

I told myself I would never truly welcome you. I will never give it all over to you. I will never toss you the reins and tell you to lead.  I will never give you the control. I will never give you the power.

Because just like you, I am strong. Just like you I am a piece of him. Just like you I am here with him every single day. So I cannot give him to you. Not all the way. Each day I will work with him to make you smaller and smaller. Each day we will learn new ways to overpower you.

I know that you will not leave. And,  I am still learning how to be ok with that. But, since you are going to be here, there are a few things you need to know.

I love him fiercely.

I am not afraid of you.

I will take the good with the bad. Every. Single. Day.  

He is amazing. 

He is so much more than the label you place upon him.

He is strong; stronger than you. 

We are all stronger than you.

You can stay. You can stay because I do not have much choice in the matter. And you can stay because in a way that I am only just starting to understand, you are a part of us. So you can stay. You can continue to reside among us. To exist in every moment we share together. To live in the core of our family.

And I won’t always like it, but I won’t always hate it either.

In a way that I could not comprehend until now, we are in this together. But, this is my son. This is my home. This is my family. This is my life. This is my motherhood. It is important to me that you remember that.

Kindly,

The Mom

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A letter to parents at the start of a new school year…

I am the proud mother of two amazing little boys. Two boys who are growing up way too fast. So many times in a day I wish for time to freeze. To hold them in these precious moments with me. To linger in their sweetness. To memorize the easy way they nestle into me for safety and comfort. To cherish the way they need me; and the way I need them. To be mommy just a little while longer.

But all too soon I will be mom. The precious moments will end too quickly. The sweetness will come and go. They will nestle into me less and less. I will question their need for me; but never my need for them.

This year my oldest son will embark on his Kindergarten year. A thought that is both terrifying and exhilarating. His Kindergarten year will not be typical. Because my sweet boy is anything but typical. He was diagnosed with autism spectrum disorder at age 2. And every moment before, and every moment since, has been a part of a long and unexpected journey.

This year our journey takes another turn. A turn towards longer days at school. More time away from his home and the safety and comfort that it offers him. He will spend as many awake hours at school as he will at home. He will have a routine that I am not a part of. He will have relationships with people who I have not met. He will experience things that will be separate from his experiences with me.

And each day all of these things will become a little bit more a part of him. Pieces of who he will be. Day by day these routines and people and experiences will shape him. They will become an important part of his identity. An important part of him.

He will have big wins, and crushing blows. He will feel excitement, and he will feel fear. He will face new experiences, and he will meet familiar roadblocks. Day by day he will live pieces of his life away from me. And I am terrified by all that I will miss.

I want to to know everything. To sit with him after a long day. To hear about the good days and the kind people. To ask more questions about the people who show him extra patience when he needs it.  I will want to ask about the challenges. To understand the people and obstacles who stand in his way. To listen. To help. To be his partner along this journey.

And because I want this partnership, I will ask. But, I know already that the answers will leave me wanting more. Because he cannot answer these questions.  Not the way I need him to. His thoughts do not work like that. His answers are a part of his beautiful brain. A part that only make sense to him.

I will ask “Who is your best friend?” and he will answer with another question “Does Sophie like to play soccer?” I will ask “Did you have fun at school today?” and he will say “Because I follow the rules.” I will ask “Why do you not want to play with that friend?” and he will say “Because I do not want to play with him at all.” We will go around and around in circles. Asking and answering. But never really knowing.

I cannot describe to you what that feels like. I cannot tell you about the pain I feel when I cannot talk to my own child. Really talk to him. To never fully understand what is happening to him; not the good or the bad. To not know his pain. To uncover the cause.

He cannot tell me. So I cannot know.

I cannot know who is kind to him. And who is unkind to him. I can only watch his reactions. His body language around certain people. His uneasiness. His anger. His sadness. I watch. And I wonder. And I feel completely helpless.

And that is a pain I cannot describe to you. It is a feeling I do not wish upon any other parent. Because, as parents we need to band together. To protect each other. To help each other when we can.  And here in this moment I need your help.

This is my white flag. My salvation. My request. My plea. My reminder as we embark on a new school year.

Remember to talk to your children about kindness and tolerance and difference. Encourage them to embrace opportunities to make new friends. Friends who may be different from them. Tell your children not to be afraid of things they do not understand. Teach them how to ask questions. Give them the tools of patience and acceptance, and those tools will serve them well in their lives. Remind them to color inside of the lines, but to live outside of them. To understand that they may not always look the same or act the same as everyone around them. And that is ok. It is SO much better than ok! Tell them that it is fun and exciting and enriching to surround themselves with people who are different. To create their own opportunities to learn and grow. Tell them that it will not always be the easiest choice. But showing kindness and tolerance to other people will always be the right choice. Tell them that you are proud of them. That you are proud of their kind hearts. Empower them to go out into the world with kindness bursting from inside of them. Help them be strong enough to face another who is unkind, and to show them kindness in return. Teach them to live kind. Teach them through words and teach them through actions. You yourself live kind. Make kindness and acceptance and difference and tolerance a part of the fabric of your family. Your neighborhood. Your school. Your community.  Teach kind. Live kind. Spread kind. 

I cannot know everything I want to know about my son and his life outside of our home. And, I will worry. I will worry every day.

I will worry because I am a mom and that comes with the territory. But in some small way waving my white flag gives me strength. It gives me hope. Hope that all of the parents and teachers and friends and neighbors out their will sit down with their children and talk about kindness. Hope that my son and this journey we are on can be a part of something so much bigger.

I wave my white flag. It is big and mighty, but still I lift it high. I lift it high and I wave it from side to side. A plea for you to see. To share. Because I cannot do this alone.

Teach kind. Live kind. Spread kind.

💙Grayson’s Mommy

Lost and Found Along the Autism Spectrum

In this moment I see you so clearly. There you sit beside me. Your head resting gently on my shoulder. You melt into me and there we exist together. We live in the sweetness of the moment. I soak in every bit of you and this unfamiliar closeness. You feel calm and relaxed. You are not making a sound. Here in this moment I do not see my son with autism. I look at you and I see you. My son.

I take extra care not to move. I fight back every urge to brush your hair away from your face. To kiss you on the head. I want to stay frozen in the moment with you. I try to memorize you this way; nestled closely against your mommy. Your mommy who yearns for this closeness with you.

And in an instant that relaxed boy slips away. The boy lost in the stillness of a moment. The boy silent enough to hear a pin drop. The boy safely snuggled against me.

You were here with me in this moment. I found you. And now you are lost.

I can still see you. You dash around the room; leaving everything in your wake. I can hear you. You buzz and screech; filling the house with your strangely familiar sounds. I can still feel you. You slam into me; desperately seeking release for the sensory impulses that take over your body.

Just a moment ago you were beside me. And now you feel so far away.

And I am filled once again with sadness and confusion. Lost on a journey I do not understand. Desperate to find answers. To find peace and acceptance for the things that are all around me.

Finding you; and losing you. Finding myself; and losing myself.

Lost means something different to me today than it used to.  You are not misplaced. I cannot seek you out. You are not hiding in a closet or underneath the bed. I have not forgotten where I left you. You are standing right in front of me. And yet somehow, in some moments, you feel lost. Or I am lost. Or maybe we are both lost together. Lost in something bigger than both of us.

Because as difficult as it is for me to understand, I know that you do not feel lost as you spin noisily through the world. You are the boy frazzled and frantically moving around our house. You are the boy overstimulated and explosive with energy. You are the boy taking apart the pieces of the world around us and putting them back together. You are that boy. This is you.

And as deeply as I know anything, I know that it is not you that I have found in those quiet still moments. It is me.

Lost deep in that moment I feel found. Lost in something so rare and bittersweet. Lost in something that should feel so familiar. Lost in the simple joy of existing in still peacefulness with my son. And there I am. Lost and found all at once.

And as I revel in the impossible possibility of being both lost and found; I reach a deeper understanding of how you must feel every day. My sweet boy.

Lost in a world you do not understand. And found in the movements and sounds and wiggles that center you and bring you peace.

Not the kind of peace that we may expect. Your peace is not quiet or simple or still. To us your peace sounds loud. To us your peace looks complicated. To us your peace seems rigid. A peace that only you can recognize. A tireless peace that you call home.

Lost and found along the autism spectrum. A loop that does not break.  A journey that does not end. Unbounded. Unending. Unwavering. Lost and found and lost again.

lost and found

Autism Services: The Struggle is Real

I am a HUGE proponent of ABA therapy. When I think back to those early days just after my son’s autism diagnosis I know that I was lost. Lost and wandering. In need of something, anything, to guide me to safety. But I was not even certain that safety existed anymore. And then something incredible happened; we found ABA therapy. And ABA was the thing that pulled us to safety. Day by day we started to feel present in our life. In our new normal life. A life we never imagined.

I cannot think about ABA therapy without thinking of the little green note card that started it all. If I am certain of anything, it is that I will never forget that green note card. For almost a year I had been struggling to talk to my son. Resorting to gestures and guessing games to understand his wants and needs. And then our ABA team rolled in with their magical green note card and changed it all. The card simply said two words “I Need.” I remember going downstairs to participate in therapy during his second week of ABA. My son grew frustrated and was not communicating with us. The technician held up that green card and my son responded instantly “I need a snack.” I was in a total sensory overload. My eyes and ears were stunned.

From that moment forward I was a believer. I was Team ABA all the way. And I still am today. ABA has brought so many wonderful gifts into our lives.

But there is a side of autism treatment that people rarely talk about. No one talks about how hard it is to find services. Or the struggle to find consistency. Or the time and energy parents spend advocating for the services their children need.

As an autism mom I have to walk the line every day. And, parents to children with on-going medical needs know exactly what line I am talking about. The line between diligent mom and crazy psycho path. And you would not believe just how difficult it is to stay on the right side of that line. Because when it comes to our kids it is easy to feel a little crazy. And when our kids are in need it easy to act a little crazy. And slowly but surely you start to feel like Shirley McClain in “Terms of Endearment” screaming for your child to receive the medical care that he so desperately needs.

I call these “my terms of endearment moments”. And if I am being completely honest, I have had a few. Because any parent navigating a long-term medical journey with their child will tell you that when push comes to shove, they choose their child every time. And sometimes that means we go a little crazy. Sometimes we yell when we should whisper. Sometimes we send off reactionary emails when we should calmly meet to talk. Sometimes our instinct to protect makes us pounce when we should shield.

Nothing makes me want to flip a table faster than unnecessary obstacles placed in my son’s path. I know that obstacles are inevitably a part of this journey. And I accept obstacles that arise from unforeseen circumstances. But, I do not have time or patience for obstacles that could have been avoided.

I am not a doctor. I am a mom. A mom taking a crash course in autism.  A mom majoring in love and minoring in navigating an autism diagnosis. I know more about fidgets and sensory tools and behaviors strategies than I ever cared to know. But I am not a doctor. So I need to trust the medical staff around me. I need to believe that my son is more than just another patient to them. I need to have faith that our best interests are always in mind.

But sometimes this is hard. Because sometimes it does not feel true. Sometimes we feel like just another family with a required number of hours needed to check all of the boxes.

The truth about autism treatment is that it just is not good enough. Bottom line. Services are too few. Resources too sparse. Waitlists too long. Funding too limited.

We started ABA Therapy in June of 2015 after spending two months on a waiting list and another month on-boarding. In our 26 months with the program we have had 2 case managers and 14 behavioral technicians. And each time we lose a member of the team we lose history, we lose momentum, and we lose progress. We begin the training all over again. And each time we train a new person our son backslides.  Once extincted behaviors re-appear and new behaviors multiply.

And everyone tells us to see the silver lining. To welcome the “fresh” energy on the team. To focus on “new” experiences with the eager and ambitious replacement. But maybe I am just too tired and too jaded from the 13 other technicians we have trained to revel in the fresh newness of it all. It is hard work. And it is hard work that we will endure time and time again. 

The reality is that this is an entry level position with minimal training requirements and minimal wages. New technicians only train in our home 3 times alongside another technician before beginning one-on-one sessions. The turn-over is high and the cancellations are frequent. And as a mother so desperate for the best for my child, I struggle accepting this. I push back. I ask for more. I fight this battle.

But this is a battle I cannot fight on my own. It is a battle so many parents face every single day. The battle for the quality and quantity of treatment and services and care providers that our children deserve. 

ABA therapy is an incredible and life-changing experience for us. But on this journey even the good comes with struggle. So we keep pushing forward. I keep walking the line. And from time to time I step off course. I let my inner mommy psycho path shine through. I give her a pat on the back and then I keep on keeping on. Because there is no map. And, there are no rules. So I am just walking the line. One foot in front of the other. Diligent Mother. Crazy Psycho Path. And everything in between.

JS

 

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