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.

 

Grayson 6.22

 

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

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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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A Letter to my Beautiful Boy on his Birthday.

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

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

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

Well, according to my plan.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Mommy

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

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

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

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

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

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

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

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

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

Together, but never really whole.

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

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

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

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

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

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

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

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

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

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

JS

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

-Barbara Johnson

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Parenting: The Deep Dark Hole for Coherent Thoughts

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Jessica

(Or at least what is left of her…)

4.29

Why I Stopped Apologizing for my Son’s Autism.

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

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

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

I was wrong.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

JS

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

– Henry Kissinger

4.17

She Used to Be Me

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

JS