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 an 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.

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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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The Lesson About Kindness I Forgot to Teach My Son.

As a parent raising a son on the autism spectrum my head is filled with worry.

I worry that children will not understand him. That they will not understand the way he communicates. I worry that they will not take time to learn to talk to him. And, to hear him. I worry that he will be left out and left behind. I worry that people will assume that different means less. I worry that they will never know that he is so much more.

Those thoughts and worries are the soundtrack of my darkest thoughts. And it is easy to fall like quicksand into fear like that.

Luckily there is just enough hope and faith in my heart to pull me back. To keep my head above the sand. Hope that the world will be a kind and tolerant place for my son. Faith that the people in our life will welcome him with the kindness and patience and love that he so deserves.

We talk a lot about kindness in our house. I praise my children for being kind. I explain how they could have been kinder in a particular situation. I teach them that kindness is a choice. That kindness will not always be the easiest choice, but it will always be the best choice.

Somehow all of the talk about kindness give me hope that the world will be kind to my children. And I need that hope.

But I am never sure just how much my son retains. I search his face for a sign of acknowledgment or recognition. I wonder if he understands my words. If he understands how important they are. But I never really know.

But now I know. Now I understand exactly what my son is learning about kindness. Because this weekend he showed me. He showed me that he learned a lesson about kindness that I had forgotten to teach him.

This weekend at the pool my son found a group of older kids. My husband and I watched on from close by. My son saw the kids counting down and jumping in and he wanted to join in on the fun. He joined in counting along with the children and then jumped in after them.

After a few jumps the other kids became more aware of him. They exchanged comments and glances. They climbed back onto the ledge and began to count again. This time at the end of countdown they only pretended to jump. And as they pretended they all turned their heads to look at my son. But, he had not fallen for their prank. You see, my son is a mimicker.  So he patiently waited to jump after the other kids. His excitement mounted and soon he was shrieking and jumping in joy. They tried a few more times to fake him out before jumping in. And just like each time before, my son followed suit.

Once in the water it was harder to see exactly what was happening. I stood up to get a better look as my husband moved in closer to the action. All at once a lot of splashing and noise erupted.

My son swam to the edge and climbed out. He looked upset. He walked with purpose towards the shallow end. I quickly began walking to meet him, sure that he was heading towards me. But instead he walked over to the lifeguard and said, without hesitation, “Those boys are not following the rules. Those boys are not being kind.”

My heart was torn between sadness and joy. Sadness for his struggle and his encounter with unkind children, but overjoyed by the way he handled himself.

He explained that the boys splashed water in his face while laughing and yelling at him. My husband later told me that the boys were mocking his shrieking noises and gestures. The twisted irony that the exchange started with my son mimicking their fun and play and ended with these boys mimicking his speech and behavior is not lost on me. And while it makes me sad and angry, I know that Grayson did not understand that they were making fun of him. And I am truly thankful for that.

My sweet precious boy only knew that the boys were unkind to him, but he did not understand why.  And he knew that it was not ok for them to be unkind.

I realized that day that somewhere in our lessons about my son needing to give and show kindness to others, he learned that others needed to show him kindness too.

I never said it to him that clearly. I should have.  I should have told him that he deserved kindness from others. I was so worried about raising good and kind children that I forgot to tell them about all of the kindness and love that they deserve. I should have taught that lesson and I did not. But my smart, sweet boy learned those lessons anyway.

We taught him about showing kindness to others, and he determined that others should treat him kindly too. We told him that others would not want to play with him if he was unkind, so he walked away from kids who were unkind to him.

I will continue to teach him about giving kindness to others. And, I will start to remind him about the kindness he deserves.

Kindness is a choice. And it is powerful. It can be the difference between being included and being left out. Between happiness and sadness. Between joy and pain. It can create great connections or without it cause great divides.

Choose kind. Choose to bring joy and happiness to others. Choose not to perpetuate sadness and pain. Choose to do and say things that build connections. Because there is enough in the world that will try to divide us.

Choose kind. Every single day. And remember that you deserve kind. Every single day.

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Autism Parenting: No Capes, Just Love

Some things along this journey still surprise me. Like when people ask me “where do you hide your cape?”

I usually smile back and make a comment about how under the surface I am one meltdown away from completely losing my mind. I tell them that all parents are superheroes and that in some small way we all have secret magical capes.

But the truth is that there is no cape. There is just a mom. A mom who loves her children fiercely.

A mom on a journey that she does not understand. A mom fighting like hell to be enough. A mom trying to balance a career and a family and a home. A mom chosen for a life that scares her sometimes. A mom that others see smiling through the pain. A mom silently crying in the shower. A mom tired and worn down. A mom digging into every last reserve to take one more step forward.  A mom desperately trying to outrun fear and hopelessness.  To find balance. To try harder. To be better.

There is no cape. No magical powers. No man behind the curtain. Just a mom with a whole lot of love in her hear.

When my son was diagnosed with autism at ago two everything that I thought I knew about life changed. I boxed up all of the certainty and predictability and stored it away on a shelf. From that moment forward I was an autism mom. A parent to a child with a special need. Just another cape-less parent crusader on my own doing the best I could do.

And despite my silent prayers and relentless wishing; there was nothing to guide me along the way. No map. No rule book. No one to whisper in my ear and give me all of the answers.

So I am figuring it out as I go. And it is really hard. So much harder than I ever imagined it would be. And each day it is hard in new ways.

It is surrendering every ounce of control. It is watching your child struggle with things that are easy for other children. It is isolating and lonely. It is saying goodbye to the life you thought you would live. It is learning to embrace the new life. It is more patience than you have to give. More deep breaths than you care to give. It is digging in and doing the work. It is loving another person with everything inside of you. It is allowing that love to push you forward. It is watching that love catch fire. It is allowing yourself to be the flame. It is learning to be the fire.

It is somehow all of your worst fears and all of your most precious dreams at the same time.

Oh how I wish there was a magical cape. A beacon of hope. A symbol of strength.

At the first sign of a meltdown I would reach for my cape, tie it tightly around my neck and charge ahead with certainty and exuberance. During my son’s routine middle of the night episodes I would lie next to him in my cape and magically lure him into a deep sleep. At the park I would call on the powers of my magical cape to send my son a surge of age-appropriate communication and social prowess. My magical cape would work its magical powers to bring my magical wishes to life.

But you see, the things I seek are not magical things. I do not wish to fly. I do not long for the power to be invisible. I do not need to save the world. 

Instead of magic and wonder,  I wish for calm. I wish for sleep. I wish for speech. 

And, as a child I never could have predicted those to be my 3 wishes. But then again their are a lot of things about my life that I did not predict.

And here I am. Navigating this journey with no magical cape. No glowing lantern to wish upon. So I had to find my own magic. 

Love.

Parenting a child with autism is hard. For a million different reasons. But the love is so much bigger than the hard every will be. The love is stronger and more steadfast than any fear that fills my head.

When autism barges in and creates a hole in our life; love fills it. When hard work and perseverance are not enough; love finishes it. When we reach the end of our patience and strength; love gives us more.

Love is not perfect, but nothing ever is. The love is enough. It is more than enough. And the love reminds me every single day that I am enough too. I am enough to wake up every day and walk this journey. No magic cape, no super powers. Just a mom. And a whole lot of love.

JS

 

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My Neuro-typical Son Is Mimicking His Brother’s Autism Behaviors.

There are many things that they do not tell you after an autism diagnosis. You have to go into the world and learn them on your own. And we learn something new nearly every single day. We experience a new symptom. We encounter another obstacle.

We have learned a lot about the complexity of the dynamic between our son with autism and our neuro-typical son. Their dynamic shifts often. And, I watch with baited breath. I try to exist somewhere between hopeful optimism and nervous caution.

Our sons are 22 months apart. We started noticing our first born son’s symptoms of autism at 17 months. At the time I was 4 months pregnant. I had no idea just how twisty the road in front of us would be. And maybe that is a blessing.

Maybe that is how I made it through my pregnancy and delivery. Maybe that is how I pushed forward through breastfeeding and working full-time. Maybe that is how we moved our family into new home. Maybe that is how we survived a year or assessments and diagnostics as under-slept parents of two kids two and under.

We received our oldest son’s autism diagnosis eight days before our youngest son’s first birthday. It should have been a time of joy and celebration. Instead we found ourselves panicked; overcome with questions and fears and an insatiable desire to know everything.

In that quest for information we learned so many scary things for our oldest son and the road ahead of him. And if that fear and worry was not enough we quickly learned something that could complicate this journey even more.

We learned that there was a 20% chance that our youngest son could have autism too.

The thought of doing it all over again was so painful. I looked at my sweet one year old and my eyes filled with tears at the thought of going back to the beginning. Reliving the early detection. The appointments and assessments. The referrals. The wait lists. The fear. I did not think I could be strong enough to do it again.

Yet we knew that we were still five months from the time when we started seeing symptoms with our oldest son. It was a waiting game. It seemed that waiting and worrying were two things we just could not escape.

As each day passed we were encouraged as our youngest son met and surpassed milestones. He acquired new speech and language skills with ease. By the time he turned eighteen months he was talking and regularly increasing his vocabulary.

But more so than skills and milestones; there was something else. Something we could not put a finger on. Call it intuition, but we just knew. We knew that he did not have autism.

It was a relief. A relief bigger than I can explain.

But in a way that people who do not live with a person on the autism spectrum cannot understand; the relief was short lived. Because even though he did not have an autism diagnosis; autism is a part of his life. Autism causes behaviors and meltdowns and heartbreak and fear for everyone in the house. There is one person in our house with an autism diagnosis, but the symptoms effect all of us every day.

As the boys get older dynamics seem to shift and change even more.  Lately we struggle a lot with our youngest son as he navigates through the autism in our house.

He mimics the behaviors every single day. The wiggles, the behaviors, the meltdowns.

He sees his brother receive so much of our time and energy. He sees people come in and out of our house each week to spend 25 hours of “special time” with his brother. What he does not know is that this “special time” is hard work.  He sees his brother leave the house for an “adventure”. What he does not know is that this “adventure” is to the clinic to check in with his ABA coordinator.  He hears mom and dad going in and out of his brother’s room for “goodnight time”. What he does not know is that “goodnight time” is a desperate attempt to help his brother through a meltdown.

He sees all of these things and to him it feels like he is missing out. He sees his brother get “exciting” things. He thinks that his brother gets these things because of his behaviors and his symptoms. Because he is different. So, he tries to be different too.

But his different is not the same. He does not have a sensory processing disorder. He does not have impulses inside of him that make him “need” things in specific ways. His language skills are age appropriate. He is in control of his body. He does not wiggle from somewhere deep inside. He has social age-appropriate relationships with all of his peers.

It is hard to watch. It is frustrating. It is painful to see our neuro-typical son mimic the behaviors of his brother with autism.

It is hard and painful. Because that is what autism is. It creates vast and unpredictable spaces in our life. And then fills them in with things that are new and unfamiliar to us. And we all adjust. We keep adjusting. We live in a perpetual state of reset.

I have one son with autism. I have one neuro-typical son. And right now they are both displaying autism behaviors. That is the heartbreak that this journey brings every single day. I cannot explain because I do not understand it. But I live it. I live it every day.

 

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