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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My Biggest Fears About My Son’s Autism

Fear is a part of my life every day as a parent of a child on the autism spectrum.

Sometimes my fears are completely rational. And sometimes they are totally insane. At times a specific incident or behavior awakens the fear inside of me. Other times the fear sneaks in out of nowhere.

My fear is unpredictable. Often unrelenting.

The fears fill my head as I navigate through the hectic schedule of the day. And, they are present at night as I drift off to sleep. Fear is a part of every day. All day. The fear is never ending. Fear is one true thing I can count on along this journey.

The truth is, everything about my son’s autism spectrum disorder terrifies me.

The fear started long before the diagnosis. I was afraid of the answers that I did not have. But, I was afraid of the questions too. Admitting out loud that there were things about my son that I did not understand. Things that I knew were not typical. I feared the parenting journey in front of me. Sometimes I feared the journey itself; but mostly I feared that I would not be enough to make the journey. To survive the journey. And that kind of fear is powerful in all the worst ways.

Each fear led to more fear. And with every fear I grew more and more uncertain of the journey. Of my strength. Of myself.

After diagnosis my fears only increased. Fear occupied every available space in my brain. I feared things in the present: word counts and milestones and same age peer interactions. And I feared things far in the future: college and prom and marriage. I needed to bring all of the fear to the surface. I thought that if I could own up to every fear then somehow I could get ahead of fear altogether.

I was wrong.

As my son gets older it is increasingly difficult to quiet my fears for the future. As toddlers the lines that distinguish one child from another child are blurry. Children develop at different rates and acquire skills sporadically. And when they are learning to crawl and walk and talk it is easy to explain away the differences that you may see from one child to the next.

But as children get older the lines distinguishing children grow more distinct. And with every day that passes the differences between my son and other children are clear. Clear to me. Clear to my son. Clear to other children.

And, as the awareness to the differences set in all around us my fear ignites. I fear for the obstacles he will encounter. I fear the things people will say to him. The way people will treat him. I fear the way he will be perceived. And, the way he will perceive himself.

My fear takes flight.  It get very big. Very quickly.

And then in an instant something catches my attention. I overhear an exchange between my sons. I see my son wiggle in the face of his younger brother. I see my youngest son uncertain how to react. And in some moments I see him choose to be unkind in response. Because sometimes being unkind is a quick and easy way to react. Sometimes being unkind feels good in the moment. Sometimes being unkind helps you feel like you are taking back the power.

I understand all of the reasons why my youngest old son is unkind from time to time. But that understanding does not help my fear. Because if my own son struggles to show kindness to his brother, then how can I expect the world to show him kindness?

It is a real fear. A fear that I have every single day. About the world. About the people in the world. About their capacity to understand my son. Their ability to look beyond the autism. To look beyond the symptoms and the tendencies. To see the amazing little boy so filled with joy and love and compassion.

And when I see my youngest son be unkind it reminds me of the important job I have ahead of me. The important job all parents and grandparents and teachers and neighbors have ahead of them.

The job is simple: teach kindness without boundaries and exceptions and limitations. Pure and simple kindness.

Explain that the easiest thing to say may not always be the nicest thing to say. Teach the importance of thinking first and speaking second. Because sometimes quick reactions make us feel good in the moment, and make us feel bad down the road. Teach that you will never regret the time that you were kind and compassionate to someone in need. That character is more important than popularity. That a moral compass is a possession more valuable than any money can buy. That compassion and kindness and acceptance are contagious. Teach them to spread it everywhere they go.

I will never let go of my fears for my son and the obstacles that he will surely face. Those fears are now a part of the fabric of my life. But what I can do is infuse each fear with hope.

Hope for a world filled with kindness. Hope for a world free form bullying.  Hope for a natural acceptance of difference; rather than a hyper focus on difference.

Fear is powerful; that I know for certain. But from somewhere deep inside of me I believe that hope is stronger and more powerful than fear will ever be.

So hope with. Fear with me. Teach kindness with me.

 

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My Husband is an Autism Dad.

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My husband is a great dad. He is in the trampoline jumping and laughing with our silly boys. He is ever-hunting for new hiding spots in our backyard for the next game of hide and seek. He builds an impressive fire and can roast marshmallows with the best of them. He is so much more than present. He is engaged and active in real moments with our sons every single day.

He is a great dad. And I love him for that. But he is also an exceptional autism dad. You may not think there is a difference. And that’s ok. I am happy that you have never had to witness the difference first hand. But I know the difference. I know the difference because he is a dad and an autism dad just like I am mom and an autism mom.

Our life presents a lot of really wonderful moments. Moments when my husband can just be “’dad”. But there are a lot of really challenging moments too. In any given week I see my husband step up to the autism plate a million times. In those moments he has to be so much more than he ever imagined being.  He is an autism dad.

I see him get hit across the face, take a deep breath, and keep working through a strategy. I see him remain calm as things are thrown and broken. I see him try every day to understand something that makes no sense to him.

But more important than the things I see are the things I feel.

I feel the comforting touch of his hand on my shoulder when I am hunched over in tears. I feel his strength when he pulls me back to my feet. I feel my load get lighter as he takes on more and more to help.

My husband works out of our home in patient care. He has limited access to phone and email during the day. It is difficult for him to participate in phone calls and meetings for our son’s treatment. Because being an autism parent is a full-time job. On top of the full time jobs we work to afford the house and the resources needed for treatment.

He comes home from long days at work and dives head first into the autism schedule. He drops his coffee thermos on the sink and jumps immediately into the chaos. And the chaos is rampant.

Amidst the chaos he listens carefully to updates from the day. He asks questions about new strategies. He inquires about calls and emails exchanged with our ever-growing treatment team. He seeks deeper understanding of the things he does understand.

He does this every day. He walks this journey every day. This is his journey every bit as much as it is mine.

I have witnessed so many moments that I am certain he never imagined as part of his fatherhood journey. I can still see the look in his eyes when we sat around that table and learned of our son’s diagnosis; something between heartbreak and fear. I remember the agony on his face the day our son shattered the second television in six months. I feel his pain as he watches our son struggle.

I cannot protect him from these moments any more than he can protect me. So we do what we can do. We love each other. We support each other. We remind each other every day that life does not have to be perfect to be wonderful.

My husband is a fantastic father. And I love watching him be “dad” to both of our boys. But I love him the most when “autism dad” is in action. In the moments when he is implementing a behavior strategy to redirect our son. In the moments when he consoles our youngest son after he has been hit during our oldest son’s autism meltdown. In his own moments of weakness when he still finds the strength to give me encouragement to keep pushing forward.

The distinction between dad and autism dad may not seem important to you. But in our house mom and dad were not enough. Life needed more from us. Our kids needed more from us. And so we became the parents we needed to be to walk this journey.

And sometimes even autism mom and autism dad are not enough. Sometimes we have to be occasional bad-ass autism warriors. So we do that too.

I, autism mom, choose him, autism dad, to walk this journey alongside me today, tomorrow, and always. I am thankful for his super power. Thankful for his super patience. Thankful for his super love.

He is super. Super dad. Super autism dad. Super occasional bad-ass autism warrior. And I super love him for being all of those things for us every single day.

 

JESS

(AKA: Mom/Autism Mom/Occasional Bad-ass Autism Warrior)

Autism Spectrum Disorder and the Catboy Pajamas.

A few days ago I noticed that my three year old son needed warm weather pajamas. We constantly disprove the notion that having two children the same gender eliminates the need to buy additional clothing.

I ventured to the store in pursuit of pajamas. As I shopped my thoughts drifted to my oldest son and how much he would love the pajamas with the individual PJ Mask Characters. My oldest likes to pretend he is Catboy and my youngest son likes to be Gekko.  Unfortunately, these particular pajamas only came as a short sleeve shirt and short set. And my oldest son would not wear shorts.

That may sound odd to you. Why in the world would my son not wear shorts? The simple truth is that I have absolutely no clue. It is one of the many things that I do not understand as we navigate the autism spectrum.

Transitions are hard. And this year the transition from spring to summer was filled with new and unexpected challenges. My son needs pants. And his needs are very different from the needs that you and I have. His needs come from a place deep inside of him. A place he has very little control over. A place that is in complete control of him.

His need for pants is very real. For my son pants are so much more than just something he wears. Pants are security. Pants are protection. Pants are a literal shield of armor from the sensory elements of our world.

At the mention of shorts his body exudes a physical reaction: shaking, retreating, curling into a ball. He shouts and cries out in desperation. He pleads for us to understand that shorts are scary. His fear is very real. I see it with my eyes. (And I feel it in my heart.)

It does not matter to me if my son wears pants or shorts. My three year old son spends most of his time walking around our house naked or in a variety of Disney princess dresses. So there is zero judgment about what my children wear. In the lifelong parental game of “choose your battles” we were content to let this one go.

And then something happened.  He started to get sick from the heat of the day. Headaches and stomachaches at the end of warm days spent in pants. Aggressive and violent behaviors as a result of over-heating.

We intervened. Not because we wanted to. We intervened because as parents it is our job to protect him; even when that means doing something hard or unpleasant.

We ran an intensive program of extinction, redirection, praise, reward and consequence with our ABA therapy team. It was not fast. It was not easy. It was not without tears. It was not void of hitting and kicking and screaming. It was hard and exhausting and emotionally draining.

But in the end, my little man wore shorts.

In the evening the day after he first wore shorts I selected pajamas for both boys and began dressing them for bed. My oldest son saw the PJ Mask pajamas and his face lit up with a huge smile. Crap.

I explained to him that these 3T pajamas were for his brother. And,  now that he wore shorts I would buy him some too. We made a plan. (We make a lot of plans.) Monday after a twelve hour day at work I returned to the store. I went to the “little little boy” section and located the pajamas. I scrolled through 2T, 3T, 4T. Crap.

I raced over to the “big little boy” section. Crap!!!!!

In that moment I wanted to sit down on the floor in the middle of the store and sob.

The Catboy pajamas represented so much more than a “gift” for my son. They were a reward. A symbol of an obstacle overcome. A celebration of forward movement. The culmination of something that was physically and emotionally trying for all of us.

These silly Catboy pajamas were a proverbial “light” in the middle of the tunnel; because on our journey, the tunnel has no end.

I chose different 6T pajamas. Pajamas that he would surely love. But no amount of love would replace the Catboy pajamas and all that they represented. Not now. Not after 24 hours of expectation and anticipation. Not while he stood watch waiting for me to return home with his new Catboy pajamas.

I walked back to the “little little boy” section. I paused for a moment. Then I reached to the back for a pair of 4T Catboy pajamas.

Yes, they would be way too small. Yes, his boxer brief underwear would hang out the bottom of the shorts. Yes, the shirt would reveal two inches of his belly. Yes, it was completely ridiculous to buy 4T pajamas for a child wearing size 6T. But going home without those pajamas was just not an option. At least not an option I was willing to consider.

You see, a lot of things in our day to day life are hard. We fight like hell to survive. The symptoms of my son’s autism are very real. He is rigid. His speech is delayed. He struggles to communicate his needs to us. His body is very wiggly. He does not understand physical or emotional boundaries. He runs. He kicks. He throws. He hits.

Autism is hard every single day for a million reasons that we cannot control. But there in that moment, control was mine for the taking.

I knew my son could care less about two inches of his belly showing. And, I knew that going home without the pajamas would cause a chain reaction. It would bring the hardest pieces of my son’s autism to the surface.

So I bought pajamas that were two sizes too small. And I did it with a smile on my face.

I walked in the door and my son instantly narrowed his eyes on me and asked “what did you buy?” It was a quiz. I was being tested. And I am so very happy to say…I passed!

Life is hard and messy and way more complicated than it needs to be. It is ok to take the easy win sometimes. Even if it is not perfect.

JS

CATBOY 4

A letter to my son’s class. Part 2

Hey there munchkins –

Tomorrow is your last day of 4K! It seems like only yesterday that I stood outside of the door waving and fighting back tears as you crossed the threshold into your new classroom. The beginning of your grade school journey.

I stood there for a long time. I knew that eventually I needed to walk away. But I needed that moment. I needed to know that my son Grayson was in good hands. I needed to watch as you all entered your new world together.

It was hard for me to give Grayson to you. Selfishly I wanted to keep him all to myself. But the world deserved a dose of my sweet and wonderful little man. And so I gave him to you. I shared him with each of you.

I was scared, but I was still so full of hope. Hope for all of the things that you would teach him. And all of the things that he would teach you.

I wrote you a letter then and I asked you for a big favor. I asked you to keep Grayson safe. To show him kindness. I asked you show the world the power of love and tolerance. I asked you to accept differences that you did not even understand.

I told you about Autism. I told you about the way that autism makes Grayson wiggle. I warned you that sometimes autism is really loud. And sometimes it is hard to understand why Grayson is doing the things he does or saying the things he says. Autism is confusing. (Oh boy do I understand that!)

But I needed you to know about Grayson’s autism. About his wiggles and his noises. Because I needed you to help Grayson to be the best Grayson he can be. And I knew that if you could let him in that he would help you to be the best that you can be too.

And all year I have been watching. I watched the morning line-up. I participated in classroom activities. I attended school programs and after school events. I watched. And, I saw.

I saw you do something amazing. I saw you embrace my wiggly son. I saw you learn to love him.

I saw the way you invited him to join in on activities. I saw the way you did not hold a grudge after a particularly tough day. I saw you learn to carefully step back when Grayson wiggled near you. I saw you politely remind him to find his spot in line. I saw you calmly find an adult when you needed help. I saw you make silly and kind faces when you could not understand his words. I saw you excitedly crowd around him when he presented something to the class.

I saw a lot of things. Things that filled my heart with joy. Things that calmed my fears. Things that gave me hope for this world. For kindness. For love. For acceptance. For difference.

Every moment was not perfect. Sometimes he wiggled right up in your face. Sometimes he knocked down your tower and crashed your trains. Sometimes he lost control of his body around you. Sometimes he yelled. Sometimes he hid away in his box. Sometimes he wanted so badly to play with you and could not find the words to tell you. Sometimes he ran. Sometimes he went into the girl’s bathroom instead of the boys. Sometimes he disrupted the class.

And I think it is ok for things not to be perfect. Grayson has autism, and autism is not perfect.

You might think that I am silly, but I meant it when I asked you to help me change the world. Because sometimes this world needs a little changing. And I just knew that you could help me. I looked at your bright, smiling faces and I saw such a beautiful world reflected in each of you.

So before the final bell rings and you race off into summer break; I have just one more favor to ask you. Remember my son Grayson.

Remember the way that he wiggles. Remember the way he struggles to talk to you. Remember that sometimes he does things that you do not understand. Remember that he is different. Those are important pieces of Grayson and I want you to remember them.

But also remember the fun. Remember his beaming smile. Remember his joyful giggle. Remember the passion and energy he brings into the classroom.

Remember that different is good. Different is fun. Different is important. And if we all remember that; then we really might just change the world.

Have an amazing summer kiddos. Catch you in Kindergarten!

Grayson’s Mommy

Autism Spectrum and the Things That Break

Life with our son on the autism spectrum teaches us many new things every single day. We have learned about strategies for navigating difficult behaviors. We have learned about coping skills. We have learned to manage our expectations in order to protect ourselves from disappointment. We have learned to navigate a life filled with evaluations and assessments and third party opinions. We have learned that nothing around us is free from the autism in our lives.

Not us. Not our life. Not our house. Or any of the things inside of it.

This journey is teaching us not to get too attached to things. Because things break. Things shatter. Things rip and tare and unravel at the seams. Things are tossed around carelessly. Things are thrown in anger. Things are dismissed and disregarded without much thought. Things get lost in the moment. Things cause problems and need to be removed. Things are often temporary; and attaching to them only makes it harder down the road.

When we first moved into our home I had so many ideas for projects and updates in my head. And just four short months later our son was diagnosed with autism spectrum disorder at age two. It is amazing how quickly ideas change. Just how fast projects are pushed to the side. Life in our house became less about updating and more about repairing damage. Damage that did not exist when we moved in.

You may walk around my house and see a typical family home. But our home is anything but typical. Take a closer. Look at the things that I ordinarily do not want you to see.

Look at our living room TV and notice the acrylic screen protector. This is our 3rd television in this room in two  years. The first two were victims of my son’s juice cup in a moment of rage. The first time is happened out of nowhere. He was sitting happily on the couch and in a split second his mood changed and he whipped his cup at the TV. The second time he got angry because I left the house in the “wrong” car. He needed me to drive our gray car, my husband’s car. My decision to leave in my own car, the red car, cost me a television.

Look at our Ipads and phones and notice the hundreds of dollars in protective cases. Cases that we put to the test every single day. Cases that have failed us three times before. Ipads thrown because the video did not load fast enough. Phones slammed because the volume was not switched on. Valuable and expensive electronics tossed around without a care.

Look at the walls of our home and notice the disrepair. Our home is filled with holes. Even the patched holes still look broken. Maybe that is because we are too busy or tired to really repair the holes. Or maybe it is because no matter how good the repair job my eye will always know what lies behind the surface.

Wreckage. Fragments. Remnants of the broken things.  The hidden scars of a life along the autism spectrum.

And each time we stair at the static screen of a broken electronic or the vast opening of a fresh hole in the wall; we cannot help but feel like we should be doing better. We should be catching the behaviors. We should be saving our possessions from this journey.

But we cannot. Nothing is safe. Nothing is free from the autism in our life.

Sure, they are just possessions. And to some extent it is normal for things to break. But something else breaks too. Maybe it is my spirit. Maybe it is my heart. But something inside of me breaks when I watch my son destroy the possessions in our life.

There is a feeling that hits you deep in the pit of your stomach when something valuable breaks. A feeling you all but choke on. In the blink of an eye hundreds of dollars turned to nothing. Garbage. Waste.

And after living long enough among holes and discarded pieces of past possessions; you learn to detach from the broken things. And then things all together.  Because things break. In our house things break more than usual. And to protect our hearts from the sadness of the breakage; we have learned that we cannot attach to things.

Our house is still filled with projects and ideas and updates. But those projects will have to wait. Those ideas will remain in my head. The needed updates will grow more and more out of date.  Because in the moments of time when we are not working or parenting or adulating through the laundry and cleaning; we are repairing the broken things around our house.

We live along the autism spectrum with our son. And here in this space that we call a home we feel the weight of this journey every single day. We see it in the things that our eyes can see. And, we see it in the things our hearts know lie just behind the surface.

We see it. We feel it. We live it. Every single day. Things break. Possessions. Spirits. Hearts. But somehow our will remains intact.

And so we will ourselves forward. To live among the broken things. To face another day.

JS

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