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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