What You Don’t Know About High-Functioning Autism.

1 Comment

High-functioning autism is like the wind. Much of the time it is calm and unnoticeable. But it can change in an instant. Before you know it things around you begin to swirl. The contents of your life are lifted and tossed around with no effort at all. Shaken.

Sometimes the wind is quick; a burst of destruction before moving on. Other times the wind lingers; a chill in the air effecting the people and things in its path.

And then, the wind settles.  Nothing is as it was before. Everything is changed. Different, but the same. And so, you go on. Learning to accept things the way they have landed. Waiting. Waiting for the next gust. 

This is how we have come to know life. And most days we understand that this is all a part of the journey. We have learned to make space for autism in our life; to let it come and go. In a way I still do not fully understand, we are being raised by autism. Learning and adapting to every new normal along the way.  

But this I know for certain; our normal is anything but. 

I know when you look at my son you see something that your brain tells you is “naughty”. If you walk by us on the street you may see my son screaming and yelling. You may see him swearing and using inappropriate words. You may see him hitting or kicking or spitting. You will see all the telltale signs of naughtiness. You will see a red face. And angered scowl. An elevated tone. It would be easy to conclude that he is a naughty kid. A kid whose parents are not teaching him how to be “good.”

What you will not see is the storm brewing below the surface. The conflicting tornadic funnels of autism and ADHD. On one side the instinct to overthink and obsess, and on the other side the need to move unpredictably without care. Methodical and erratic. Soft and loud. Slow and fast. Steady and sporadic. Unimageable opposition all swirling around inside of this beautiful ten year old boy. 

What you will not see is the work we all do each and every day. The doctors and therapy. The schedules and medications. The rewards and consequences to help track every inch of our progress. The somber conversations at the end of a hard day evaluating the next course forward. The celebrations when we achieve even the smallest success.

High-functioning autism might look like naughty. But it could not be further from the truth. There is a saying that I turn to in my darkest moments: “my child is not giving me a hard time; my child is having a hard time.”

Inside of this tiny little person battling multiple social emotional disorders is the kindest soul you will ever know. He is navigating high-functioning autism every single day. And, some days are better than others.

I wish I could release a forcefield of protection around him every time he leaves the house. But I cannot do that. Instead I just have to live inside of the hope that people in the world instinctually want to be good. And maybe if they knew more, his road ahead could be a little less filled with challenge.

This is what I want you to know, what I want the world to know, about high-functioning autism.

High-functioning autism is not naughty.

It is on the surface looking just like everyone else around you, but holding so much difference inside below the surface.

It is knowing the words to explain your feelings, but never being able to use them just right.

It is a deep yearning for social interaction, but a lack of natural ability to act on those urges.

It is working up the courage to join in, only to be left out for acting “weird”.

It is having a brain that most people cannot understand.

It is having an outburst at your friends because they cannot see something the way that you see it.

It is never being able to explain things the exact way you experience the world.

It is seeking order and systems that make people around you feel uncomfortable.

It is needing extra support at school, but not wanting to look different in front of peers.

It is big emotions in all directions; happiness, excitement, sadness, anger, fear.

It is an acceptance deep inside of you that you are different, without ever understanding why.

…

Being kind, truly kind, means looking below the surface. It is not just the act of saying “be kind” it is the act of living kindly. It is accepting that there is always more than meets the eye. It is giving grace even when it feels un-natural. It is seeing a “naughty” child and considering that there may be more to the story. It is being grateful for what we have in this world; and considering others who are less fortunate.

Kindness is a deep commitment to continue learning. And if you learn anything from my words today let it be this; high-functioning autism is not naughty.

The next time you pass a child on the street, red-faced and filled with anger, do not judge. Instead, consider giving the parent a smile in kindness before moving along.

No One Told Me.

Leave a comment

I remember so clearly my son’s 6-year-old year. It, like many, was a noisy year. That year his obsession with baseball came to life. If a year could be summarized in a sound, the sound of 2018 was the repetitive tongue clicking imitating a baseball bat hitting a ball. I swore that clicking sound and the exaggerated swinging of his arms would be the death of me.

He clicked and swung first thing in the morning; long before mommy’s first sip of coffee. He clicked and swung during breakfast. He clicked and swung all day at school; so much so that his teaching staff designated a safe swinging zone for him. He clicked and swung in the shower, in restaurants, in ABA therapy, in the car, and in his bed. Click. Swing. Over and over and over.

I sit here today, 3 years later, dreaming of the click and swing days. At the time I remember feeling so annoyed by the obsession. By the repetitive and distracting noises that filled our house. At times I would throw my hands up in frustration and say “JUST STOP SWINGING”. To which he would coyly smile in my direction just before letting out another click and a swing. Yes, it was annoying. But, it was also harmless.

Today the sounds and gestures that fill our house are not playful. They are not silly. They aren’t even annoying. Today the sounds and gestures that fill our house are scary.

No one told me what the innocent clicks and swings of a 6-year-old could become. No one warned me that noises and gestures and obsessions would grow with age. No one told me that annoyance and silliness could become something so much bigger. So much scarier. And, it makes sense. Maybe no one needed to tell me. Maybe I should of just known. But I didn’t.

I didn’t know that the sound of my son’s voice screaming and yelling would bring me to tears. Would bring me to my knees. I didn’t know that someone so filled with love and joy and laugher; could also be filled with so much anger.

And now, autism is no longer clicks and swings. Now autism is screams and hits.

Autism is holes in walls. Autism is rage filled threats. Autism is a constant longing for something else. Autism is a million little pieces of our lives cast all over the floor. And, autism is a million little pieces of my heart; shattered and put back together each day.  

I am not afraid of my son. I am afraid of what is happening inside of him. I am afraid of what he is feeling that he is not able to communicate to me. I am afraid that the screaming and hitting are an effort to get my attention. And, I am afraid that even when I am standing in front of him waving the white flag, arms wide open to hold him, that he still does not feel seen and heard. Not the way he needs to be seen and heard.

I am afraid that he knows what I know. He knows that I will never understand. That I will never feel things the way he feels them. I will never see things the way he sees them. He knows that despite my white flag and my big hug; I cannot help. I cannot take away his pain.

So, we spend our days tiptoeing from one meltdown to the next. Trying to clear the path. Trying to stay safely in the shadows of the next autism meltdown.

And, I feel silly. Silly for having ever been annoyed with the clicks and swings of my son’s childhood obsession. Those feelings of annoyance have long been replaced with feelings of fear and sadness. Feelings of desperation. A deep yearning for survival.

After 18 months it is getting harder with each passing day to call this a phase. I know that behaviors ebb and flow. I know that diagnosis is filled with ups and downs. Highs and lows. Wins and losses. Hopes and fears. I know that we are still in the very early leg of a life-time race. A journey that has no end.

Today, I feel uncomfortably settled in the friction of day to day survival. We are learning to live in the permanency of autism; and the long-term impact on our family is felt a little more every day.

So just for a moment I close my eyes. I see a silly boy with a coy smile. I hear a click. I see a swing. I remember that it wasn’t always this hard.

And then I open my eyes.

JS

Celebrating Endings on a Never Ending Journey

1 Comment

Not so long ago I can remember subscribing to the belief that our journey with autism would never end. When you find yourself face to face with a lifetime diagnosis; the feeling of permanence comes naturally.

When I picture our lives moving forward I always see the autism in the middle. I see autism firmly rooted in the middle of my family. In the middle of my home. In the middle of me. Autism is as natural in our house as air. And each and day we inhale and exhale autism. Some days it is a quiet calm breath that we feel deep down in our core. Other days our breathing is labored; finally catching our breath just to lose it again. And some days we only recognize that we are breathing at all because by some wild miracle; we are still alive.

And you go on this way day after day. Week after week. Month after month. Year after year. You go on this way because it is the only thing you know. You go on this way because there is no other choice.

So we inhale autism in; and exhale autism out.

There are so many things I never expected when we first received my son’s autism diagnosis at age 2. I never expected it to be so difficult to find affordable services. I never expected to feel so completely tired in my soul. I never expected the connections and sense of community. I never expected to slowly learn to love little pieces of the autism in our lives.

You see, a lot of days autism feels like a blade. But every so often autism becomes a warm blanket. It is our diagnosis. And sometimes we curl inside of it.

Today I still subscribe to the idea that autism will always be a part of our lives. I know that my son will continue to grow and change and evolve. I know that just when I think I have him figured out; he will pivot and become something new to me. I know that we will continue to breath autism in and out of our lives every single day. On repeat. Forever.

But today the breathing is easier. Today we learned that even on a never-ending-journey sometimes, things end.

Today, on our 5 year ABA anniversary, my son was discharged from ABA.

Maybe I should be able to type those words without crying, but I can’t. I can’t help but cry as we close this chapter that has defined nearly every moment of our lives for the past 5 years.

I estimate that my son spent 4,680 hours of his life in ABA therapy. That is equivalent to half of an entire year. 182 days.

I feel such a mix of emotions. I am overcome with pride for my son. And, I am overcome with pride for my husband, our youngest son, and myself. Those 4,680 hours were some of the best and worst of our lives. And we walked every minute of this journey together. Always looking ahead with hope and determination.

I feel so thankful to the incredible team of people who have been a part of this journey. 21 technicians. 5 case managers. 1 BCBA. 2 Speech Pathologists. 1 OT. And the most incredible clinical program director. These people were our life line in so many different moments. There were days when we just prayed for that knock at the door. We lived for the moment we could welcome relief and solace into our home. I used to feel ashamed of those feelings, but now I am not ashamed. Those feelings were real. And they were mine.

As we sat “face to face” via telehealth today I told our team that it feels a little bit like we are kicking out the beam…and praying that the roof does not collapse. We all laughed. But, I was not kidding.

I am prideful. I am thankful. And I am just the slightest bit terrified.

Inside of our four walls, while the world is literally chaos around us, we are living in peace with autism. Because somehow, when we least expected it, we made peace with our journey. We stopped looking for a way off of the ride and started to find joy along the way. We understand that sometimes on this journey things will end; to make room for new things.

What happened today is not the end of our story. Tomorrow we will wake up and turn the page. We will breathe autism in; an exhale autism out. We will continue to work hard every day. And with one foot in front of the next we will continue to walk this journey.

Today. Tomorrow. And for the rest of our lives.

*This post is dedicated to our incredible team. We will miss you deeply and we will carry you with us always.

Are you kinder than an 8 year old?

Leave a comment

Are you kinder than an 8 year old? Do not answer. It is a rhetorical question. Think about it. Are you?

Do you walk through the world unbiased? Do you choose to embrace the difference around you? Do you truly see people? Not just the person standing in front of you or the behaviors in front of your eyes. Do you truly see people? Do you believe that there is good and opportunity inside of everyone? Do you show kindness even when kindness is not earned? Do you show unconditional support of someone who needs a little extra from you? Are you willing to sacrifice a little piece of yourself in order to help another person?

I think we walk through this world wanting to believe that we can honestly and truthfully respond in the affirmative to every one of those questions. But, we are wrong.

When push comes to shove it is human nature to protect ourselves first. To do the right thing, until the right thing becomes uncomfortable or inconvenient. Sure, protect yourself. Put on your own mask before assisting others. But while you are protecting yourself; open your mind. Open your mind to the idea that the person sitting next to you is different from you in a million ways that you can see; and a million different ways you cannot see.

I just sat face-to-face with an adult who has a different definition of kindness and inclusion than mine. An adult who is aware of my son’s autism spectrum disorder diagnosis. I sat and listened as she deconstructed my son’s “tantrums”. I let her say that word 4 times before I stopped her.

My son does not have tantrums. My son has autism. The behaviors she was describing are a part of who he is. My son is not bad or naughty or defiant. My son is autistic.

And I cannot tell you how much it pains me to say those words. Even still today 5 years after diagnosis. Even though he is verbal. Even though he is mainstreamed for school. Even though he plays sports and has friends and is living a full life. I still wake up every single morning the mother of a son with autism. And he still wakes up a child with autism. And neither of us chose this life.

But come on guys. It is 2020. How are we still here? How are there still grown-ups who do not understand that it is not okay to discriminate against someone for a disability? To Sit down and describe REASONS someone is bad without understanding that they are recounting a list of SYMPTOMS.

And after the unkind words and reasons why my son cannot be accepted, I was told that they were not ready, emotionally, to embrace my son.

Wouldn’t that be nice? Gosh. If I had the luxury in the moment of one of my son’s behaviors to say, “hey you know what bud, now isn’t really a good time for me. I had a long day and I have laundry to fold. I am not quite sure I can deal with you, emotionally, right now. Can we take a month off while I try to decide if I can step outside of myself to help you?”

That is not how the world works. Not for me, and not for my autistic son. Maybe not for anyone.

We are feeling people in a world full of feelings. And right now I am feeling disappointed. I am feeling mad. And, I am feeling overwhelmed by ignorance. By exclusion. By the inability of grown-ups to step outside of themselves. To process their emotions without limiting a child. To be a better example of the kindness and compassion and inclusion that we should be able to expect of each other.

I understand the dangers of autism. Believe me. I have the scars to prove it. My house is filled with wall patches. I have spent more money disposing of cracked electronics at the dump than I care to remember. I understand that his behaviors (tantrums) can be tough to take. And because of that we have committed our lives to giving him the tools and support he needs. To work through his behaviors. To grow. To get it wrong, and to get back up and try again.

We do not diminish this journey and the ways that it affects other people. I am other people. My life, and the person I used to be, are both casualties of my son’s autism diagnosis. Autism is hard. Autism hurts. But my son is so much more than his diagnosis. Autism is also kind. It is pure. Autism is a million little moments of joy and anger and sadness and jubilation and rage and fear, and every other emotion.

My son is good. And my son has the power to unlock hope and opportunity and kindness in everyone around him. I have seen that firsthand. I have watched children embrace his difference. Learn from it. I have watched an 8 year old child master the skills of redirection and extinction. I have listened to children explain my son and his behaviors to other children. I have watched time and time again as my son has stolen his way into the hearts of people around him. And as a result I have seen them be better, kinder people.

But that cannot happen if you do not let him in.

So you can close this door. You can give up on him. You can exclude him. You can live inside of your tantrum-free world.

But the world out here is going to keep moving forward. Because we have to. Because it is the right thing to do. Because our children deserve to live in a world where adults are the teachers, and not the students, of kindness.

And we will move forward. We will grow and prosper and be stronger. Not because of you, but in spite of you. In spite of anyone who thinks we cannot. In spite of anyone who looks at my son and sees the autism first. Or worse yet, only sees the autism. Because he will move forward. He will be amazing. And I will be right there beside him. I will continue to believe that we can build a world filled with adults capable of unconditional kindness.

And until then, I will continue to take my lessons on kindness from 8 year-olds.

JS

An Unfamiliar, Familiar Place

Leave a comment

Today I took a walk. I bundled up on this cold 20-degree Midwestern December day. I pulled out the biggest sunglasses I own. I picked up my headphones. I laced my tennis shoes. And I walked. I walked and I cried. And all of me transported back to a different time. A time that seems so long ago now. A time when my escapes to walk and cry were frequent. Constant.

And, then in that moment I felt something inside of me split in two. Simultaneously thankful and furious.

Thankful. Thankful for so many things. For all of the wins and the gains over the past few years. Thankful for the strength that continues to come from a place inside of me that I only know exists because I am still here today. I am still walking this journey. Still striving to live a life battling against something I do not understand. Something I will never understand. Thankful for all of the tear-free days lately. Thankful for my son. The greatest gift I have ever been given. And the most incredible person I know.

And furious. Furious to be back in this unfamiliar, familiar place. Walking and crying. Confused and angry and lost and heartbroken and outraged.

I walked and I cried and I listened to all of the saddest songs on my playlist. Because, apparently these are my adult coping skills. My mind raced back to the beginning. To all of the times I looked at my son and worried about the journey in front of him. In front of all of us. Lost sleep thinking about how his autism diagnosis would intersect with every single facet of his life. Of our lives.  To all of the moments I was told what he would not do. Could not do. To all of the people who underestimated him. Underestimated me.

Today someone took something away from him. And they took it away from me too.

The thing they took cannot be held in your hands. It cannot be seen, at least not unless you are looking in the right places. It is something more valuable and important than any possession. Today someone took away my son’s chance to demonstrate just how capable he is of moving mountains. Of making enormous gains. Of learning and growing in ways that seem impossible. But they are not impossible. They are very possible, but only if he is given the chance.

And today someone took away an important chance. And there is nothing I can do about it. There is no war to wage. No hell to raise. There is no board to appeal. No second opinion. No redo. Today I was told my son can no longer be a part of something that was important to him. To his journey. To the skills he is building; for today and for the rest of his life.

And the worst part? I blame myself. I hide behind my big sunglasses and my heart-splitting music and I walk faster and faster. And I think about all of the things I should have done differently.

I should have been more prepared. I should have done more to help him find success. I should have found more time. More energy. I should have done more. So much more.

I am back once again at a crossroads on this journey. Uncertain of which way to go. But this time, there is a road that is closed. Not under construction. Not down to one lane. Not flashing lights. Closed. Done.

And now it is the only road I want to be on. For a million reasons. Because he wants to. Because I know he can. Because I know how important it is for his growth. Because I want to prove everyone who doubts him wrong. But more than any other reason, because I am his mom, and it is unbearable for me to think that there are places or things or people that are just closed for him.

We have been navigating our autism journey since my son was 18 months old. Today he is seven and a half. He is unrecognizable from the three-year-old barely-verbal child who started ABA therapy. He has risen time and time again. To beat the odds. To show us his potential. To prove that with love and time and programming he is limitless.

And today, I have to enforce someone else’s limits on him. And I am mad. Mad and sad and confused.

This story is not over. The page is turning. Today the fire inside of me that has been idly burning over the past few months is now erupted into immense flames. Fueled by passion and love and an unwavering commitment to advocate for my son. Today it burns bright for my son. For everything I know he can do. Will do.

Packing Up the Pieces

1 Comment

What was that sound? It is 7:30am. I have not even finished a full cup of coffee. My mind is barely focused on the day that lies ahead. I am still wearing my pajamas. Trying to linger in the quiet calm of the morning for just a moment longer.

Mornings should be peaceful; still. Mornings should be about reflection and new beginnings.  A fresh chance to embrace a new day should be calming.

There are a lot of things that mornings “should be”. But, as we navigate the ups and downs of my son’s autism spectrum disorder; things never really seem to be as they should be.  

We have only been awake for one hour. One hour and more screaming and tantrums than I can count. And then the sound. The sound that froze our house still.

The sound was glass. Shattering glass. A sound I am all too familiar with. Shattering glass behind the closed door to my son’s bedroom. A door I closed mere seconds before. A door I closed as he raised his storm trooper figurine above his head. A door I closed just seconds before he released.

There is a progression of thoughts that race through your head after glass shatters in your home at 7:30am.

My first thought is about my son and his safety. As my husband sped into the hallway to find us, I knew his first thought was the same. We slowly crack the door open to see our son standing, at a safe distance, behind the glass. His eyes are wild with fear and anger and sadness.  

It is only after he is lifted and moved to safety that the other thoughts begin to come in.

My second thought is of my face and the seconds that separated a shattered mirror from a shattered face. It would not have been the first time I was hit during a tantrum. And it surely would not have been the last. But in that moment, I am thankful that on this particular day the broken thing is truly a thing; and not a face.

My third thought is of the neighbors. Of the bedroom window I cracked open just moments before the glass shattered. Of the terrifying sound that filled our home. That often fill our home. Of what people must think of those sounds. Of what I think of those sounds.

My fourth thought is a logical one. I am thankful that today is garbage day. I am thankful that we do not have to live among the evidence. Thankful that I will not walk by the shattered mirror in the garage. Thankful that the physical object will not be here for my son to fixate on. I do not want to think about that mirror. Or what it represents. I want it gone. And today I am thankful that it will be picked up with the other garbage and broken things sitting outside of our home.

My fifth thought is about the day that is still ahead. After all, we have only been awake for one hour. And this single hour of our life was filled with more emotion and mayhem than many full days. I think of school and how the incidents of the morning will impact him there. I mentally start to prepare myself for the phone call from school. “Your son is having a tough day today.” And for just a moment I will fight the urge to say “so am I.”

My last thought is a frequent thought. It is a thought that fills my head over and over again. Many days it is the first and the last thought of my day. It is everywhere I go. I sit quietly and think to myself; “Am I strong enough for this?”

And I know my thoughts and fears are justified. But I also know that this is not about me. Not really.  I know that this journey is not about my almost-broken-face. Or my actually-broken-heart. I know that the center of all of this is my son.

I finish my coffee. I go to school with my husband and lead my other son’s 4K class through a tornado science experiment. I push every emotion inside of me down far enough to get through the motions of the morning.

And then I return home. The scene of the crime. I head into my son’s room with boxes and cleaning supplies. And then one item at a time I pack up the things sitting on his shelves and hanging on his walls. It is not punishment. It is protection.

I know that things will continue to break. I learned early on that autism and “things” do not mix. So, I detached myself from “things” as much as any person can. But as I stare around my son’s stark bedroom, I feel sad. While packing things away I exposed the holes hiding behind his artwork. Holes from tantrums long ago. Holes that were out of sight; and out of mind.

And all at once the walls of his bedroom tell a story. Our story; his, and ours. I listen for a while. I remember. I let the tears fall down my face. And when I cannot take anymore; I pull the door closed and walk away.

This journey is a one-day-at a time kind of journey. And some days are better than others. Today was a hard day. Today I reminded myself over and over again that things can be replaced. That hearts can heal. That I am strong enough.

JS

Moms Struggle to “Live Our Best Lives”; and This is Why.

Leave a comment

The advice for moms in never-ending. Bits of shared wisdom to navigate through the blissful chaos that is motherhood. And, there is no shortage of popular adages to guide us along the way.

All day long my social media feeds encourage me to “live my best life”. I was raised with the good sense to “work hard and play hard!” My mom always reminded me, “you can’t dance if you don’t pay the band”. My fitness blogs and coaches challenge me to tell them, “what I did today that was just for me.” Even from the very first time I picked up a maternity book I read, “you cannot take care of your family, if you do not first take care yourself.”

As moms we work tirelessly to provide love and light to everyone.  We watch as the seeds of our life bloom around us. Children. Husband. Career. Friendship. Faith. Philanthropy. Creativity. Health. Financial Stability. The list goes on and on.

We are smart, intentional women. We know that life is all about balance. We know that in order to be great moms; we need to be great women first. Women who are strong. Women who embrace life. Women who take risks. Women who create boundaries and break through them in equal measure.

And so we move through our daily routines in search of balance. We learn to balance pick-up lines, and home work, and lunches, and laundry, and school theme days, and endless mountains of paperwork, and long days in the office, and nights filled with emotional hurdles, and juggling financial woes, and last minute trips to the grocery store because we just found out we need to send 16 snacks that start with the letter “K” to school the next day.

Just when we think we cannot pile one more thing on; we redistribute everything to pile on even more. And somehow, we convince ourselves that this constant redistribution of the load we carry is helping us to achieve balance.

And this stuff is heavy!  Sure, there are physically heavy things. Like carrying 2 backpacks, 2 lunch boxes, the rhyme box, the nightly reading bag, and any number of discarded clothing items to the car at the end of the school day. And not because they asked nicely. Because they walked out of the school and dropped it all at our feet.

But some of the heaviest things are not “things” at all. I am talking about the emotional load. The never-ending list of fears and worries that run through our brains in the middle of night. The panic that sets in when we forget something on the to do list.  The anxiety we feel over constantly questioning the decisions we make.

Did I pack the right food for lunch today? Did I remember to send in the permission slip? Do I spend enough time reading with my child? Is it gym or art today? Do we have any pants without holes in knees?  Should I be worried that my child only eats 5 foods? Did I remember to schedule a sitter for my meeting on Thursday? When was my last doctor appointment? If my youngest is 5, can I still go to my OBGYN? What is the temperature going to be tomorrow? How many arguments will we have trying to get everyone out the door in the morning? Do I still send my kid to school in boots when the snow is melted but the ground is wet?

I mean, that last one sounds ridiculous. But seriously, do I?

I ask myself these questions and a million more. Usually around 2 o’clock in the morning. I give myself a hard time when my child’s birthday passes and 2 weeks after I still have not gotten into the pediatrician. I update and edit the family calendar so many times in a week that I am blue in the face. Some nights I stand in front of the refrigerator and think about how much easier it would be to just go to bed and skip dinner. But I cannot do that. Because if I go to bed then the to do list will only get longer.

We are in the messy, middle part of life. Our kiddos are somewhere between the adorable newborn phase and mature self-sufficiency phase. And from what I can tell this messy middle might last anywhere from 7-25 years. And right now that sounds like a really long time.

So what is a mom to do?

Some days I take more deep sighs then I am comfortable admitting. Some days we far exceed our screen time limits. Some days I put on my biggest sunglasses and hide my tears from the world. Some days I turn up the 90s rap music so loudly in the car that my windows shake. And some days none of that is enough. Because some days I just need a break.

But as any mom alongside you in this messy middle will tell you; the break is never stronger than the bite. You know, the reality bite that is waiting for you after your break. The overly emotional children. The back log of to do items. The exasperating feeling of being two (or two hundred) steps behind. The constant feeling of being punished for taking some time away for yourself. Because in the messy middle your life is not your own. In the messy middle too often moms are living life for everyone around them first.

I do not see a lot of moms in the messy middle living their best life. Even if social media occasionally makes it look all “rosé all day” and “pink wine in the sunshine.” Reality looks a little more like this; “tantrums all day” and “too much whine and whipping someone else’s behind.”

So, I may not be “living my best life.” My days with giant straw hats on expansive beaches may be few and far between. My moments on the town may be restricted to occasional weekend nights between the hours of 6 and 10pm. But in this messy middle phase of life; it is ok to live a “best I can do for now life.”

Because remember, it is all about balance. And even though I may be failing desperately to achieve balance today; maybe the real balance is still to come. Maybe the real balance is that we live for everyone else in the beginning; and that teaches us to live for ourselves. And the hope of that might just be enough to push me through the next 7-25 years.  

JS

Navigating Diagnosis; Again.

Leave a comment

Nothing prepares you to receive a diagnosis for your child. No amount of Google searching. No in-depth conversations reliving every single milestone in your young child’s life. No “just give me a sign” plea to the higher power in your life.

Nothing prepares you for the moment that a doctor sits across from you and changes your life with 7 words.

7 words you probably already knew were true.  7 words you spent countless nights wishing away. 7 words you feared. 7 words your ran from. 7 words you will never un-hear. Just 7 little words.

“Your son is on the autism spectrum.”

You look at your child a million different ways. From a million different perspectives. You look from top to bottom; inside out. And each and every time you change your angle, you will see the same thing. You see your child.

You see the physical traits. You see the behaviors. You see their emotional and physical responses to new situations. You see the facial expressions that tell you what kind of mood they are in. You see the preferences they are developing. You start to learn their triggers. The things in their path that pull them of course.

You look at your child and you see them for all that they have ever been; yours. All of them. Even the parts you wish you could heal. Even the pieces that you know might never fit. Even the parts that scare you.The parts you do not understand.

And then all the sudden someone else sits before you and your child. Someone who has only seen a small fraction of all the moments you hold so dear. Someone who will never know all the layers of your child. All the expressions and traits and behaviors.  That person sits before you and they change your world. They tell you that your child; the one who’s heart first beat from inside of you, is different from you in a way that you cannot change. In a way that you cannot begin to understand.

And for just a moment you stare back at the doctor as if they are a thief. As if they have just stolen something from you. Something that was yours; more than anything else has ever been yours before.  They strip you of everything you thought you knew and replace it with an uncomfortable blank slate. An empty slate. A new beginning in a foreign land.

My son was two-year-old when he first received his autism diagnosis. Every single day of the last four years we have navigated this foreign land. Using only the diagnosis as our guide, we walk this journey.

And I keep waiting for it to feel familiar. To find comfort in this never-ending journey. A journey we learn a little more about every single day.

But the comfort does not come. The familiarity does not set in. Each day feels as new as the last. Filled with uncertainty and fear and just a little bit of wonder. Something new awaits us around every twist and turn. And there are not road signs on this journey. No warnings of what might lie ahead.

Almost four years to the day from the autism diagnosis I found myself, as I often do, sitting before a medical team. And, I should have sensed the familiarity. I should have been comforted by past experiences. I should have recognized it sooner.

I did not.

I sat in an unfamiliar-familiar place and heard 7 little words. 7 new words. 7 words with a just a little bit of nostalgia. 7 words that would further complicate an already complicated journey. 7 words that will change our course. Again.  7 little words.

“Your son has a dual diagnosis; ADHD.”

I still look at my child and see the only thing that that has every really mattered. He is mine. He is mine more than anything has ever been mine. He is mine. His autism is mine. His ADHD is mine. Every piece of this beautifully complex person is mine.

And so we turn the page. A new beginning in a foreign land.

JS

Somewhere in the middle…

1 Comment

Life has been a little messy lately. Actually, life has been a lot messy lately. And…I have no idea why I just tried to filter my mess for you. I am not sure why I felt the need to try to make it a little more presentable for you. My mess is my mess. And, I did not come here to apologize for it. I came here to own it. I came here to tell you that even though my life is messy; it is still my life. My beautiful, messy, imperfectly, perfect life. And, I know life won’t always be so messy. I know the mess will rise and fall over and over again. And, I know that I will rise and fall with it.

I know I am not the only one who knows what it feels like to live inside the messiness of a life. I am talking to you. The people doing the best they can to put one foot in front of the other. To smile. To embrace the moment. To create joy and memories. To quiet the fears. To overcome the feelings of worry that hold us down. That fill our brains. That threaten to take us over. To work through the mess one day at a time. To fight the urge to quit. To give into the mess.

Life has been messy for a while now. After a fantastic year of progress and growth and HUGE academic gains; things came to a screeching (and untimely) stop in September. We started to see major regressions in my six-year-old son’s autism behaviors. We found ourselves caught completely off guard.

Shame. On. Us.

It is my job along this journey to hold on tightly to reality. To be a constant reminder to myself of the pain and hardship that we have experienced throughout the course of my son’s diagnosis. To focus on the present and future, but to remember the past. I have always thought of this as a survival tactic along this journey. Being a parent to a child on the spectrum means that you constantly live in a state of pivot; ever-ready to change directions on a dime. And this is always something that I have been really good at.

But our last good stretch was just a little too good. And, just a little too long. And somewhere along the way I stopped looking at life as “before” and “after” diagnosis. Life just started to be life again. And I cannot tell you how incredible that felt.

We were going places and doing things that we never dreamed we could do. We were braver and bolder than we had ever been as parents. We were living a life without boundaries. Without limitations. We were free.

Except we weren’t. Not really. Because you cannot be free from a life sentence. Autism is not something that you get to walk away from. It ebbs and flows. It gives and takes. It inside outs and upside downs. It moves in a million different directions at a million different speeds. But it does not stop. It never stops.

And for just a while I forgot that. And remembering was like living through diagnosis all over again. One reminder after another that we are not free. That we are, and always will be, living in the “after diagnosis” phase of life.

We had to learn a lot of things over again. We started to remember what it felt like to say no to things because we just weren’t up for it. We started to wonder if the entire life we built would start to unravel one piece at a time. We watched as autism moved back into the center of our life. And we were so angry. We were bitter. We were filled with resentment. We were all the things you would expect to be when you falsely believe you have beaten something that you can never beat.

So here we are. On a journey we will never understand. And even though this journey is familiar; the course is brand new.

Six-year-old autism looks A LOT different than three-year-old autism. Have you ever met a six-year-old? So bold and steadfast in who they are; yet wildly uncertain and terrified at the same time. Filled with new and powerful language (thank you very much recess chatter). Change moving through their bodies and their brains faster than they can begin to understand. Six is really the first year of being a “big kid”. And new to the big kid world they start to test boundaries and push the limits. A collective army of little people on the brink of becoming who they will be.

Six-year-old autism looks like all of that. And so much more. Six-year-old autism is filled with new physical sensations and experiences. The first time my son lost a tooth he walked out in the morning and I said, “I have a wiggly tooth.” Until that moment I didn’t even know for certain that he knew what that meant. Four minutes later his tooth literally fell out of his mouth. I am sure that tooth had been wiggly for days, maybe weeks. But six-year-old autism did not know how to share that information. He experienced all of the sensations of his first wiggly tooth. And I never even knew about it.

Six-year-old autism is also filled with so many new emotions; BIG emotions. Happy times are a little more happy. Hurt feelings hurt a little more deeply. New adventures are a little more adventurous.

And six-year-old autism is even louder than three-year-old autism; I truly did not think that was possible. And, man is it stronger. I have been on the wrong side of a meltdown enough times to tell you, that six-year-old autism is not messing around. It is strong and loud and tough and fast. And six-year-old autism is scared. Scared of the new feelings and emotions and sensations it does not understand. Filled with language, but still figuring out communication.

So here I am. 4 years post diagnosis and just as uncertain as ever. Doing the best I can to navigate the messiness in this place. This moment in time. This stop on a journey that has no end. And, there is a lot more to this story. There are a lot more stories to tell. And I am so beyond happy to be back in this space sharing our stories.

JS

There are Lots of Ways to be a Boy.

Leave a comment

rowan

If there was a day at the hospital after giving birth when they handed out instruction manuals and rule books; I missed it. Perhaps I was too busy gazing into the eyes of the most handsome men I had ever laid eyes on. Perhaps I was falling deeply in love with my babies. Perhaps I was struggling to master breast feeding. Or perhaps I was simply marveling in the pure joy all around me.

Never the less; I missed the “how to” day at the hospital. And even if I had attended, even if that was a real thing they offered to first time parents, there is no way they could cover every single thing. Every obstacle you may encounter. Every triumph you will experience. Every struggle you will navigate. Every decision you will second guess.

So we go out into the world and we become experts in the art of “winging it”. We make decisions we are uncertain of. We navigate obstacles we don’t understand. We lead with love and we hope for the best.

And every day we navigate things we never expected along our parenting journey.

Case in point.

My four year old son wears dresses. He has a beautiful imagination filled with magic and princesses and happily ever afters. He loves to wear dresses and jewelry and wigs and sparkly shoes. He likes to unhook his glasses strap so he can pretend it is a ponytail. He finds random things around the house and turns them into fashion accessories.

When he plays pretend he is usually a princess. Or a damsel in distress. He talks about being a bride and getting married in a dress. He only sings the girl part of most Disney duet songs. He sings and twirls and dances his way through life. He is filled with joy from the top of his wig to the bottom of his sparkly toes.

He started dressing up when he was two years old. It started with my shirts that he pretended were dresses. And his love for dressing up in all the beautiful thing just kept growing.

He does not understand why he has to wear black leggings to dance when the girls in his class can wear pink and purple tutus. He does not understand why he cannot wear dresses to school. He does not understand why anyone else would care what he is wearing. Because he is so sure of who he is. And because he is happy.

And I get that it might be shocking to see a little boy in a princess dress. I understand that other boys his age are playing sports and running wild.

But here is the thing; he is doing those things too. He does the things that make him happy; all of the things. And as his mom my most important job is to love and support him while he figures out who he is.

I give him the freedom to express himself. But, I also set boundaries. I buy him dresses and wigs. But, I also buy him sport shorts and t-shirts with bugs on them. I tell him that I love him every day. I embrace all of the pieces of him. I want him to know that no matter how he chooses to present himself to the world that he will always be my son first.

This is my son. He is wildly creative and confident. He is un-apologetically who is every single day. And the best part about that is that he doesn’t even know who he is yet. But he is figuring it out a little more every day.

One day at a time.

One creative make believe story at a time.

One fort creation at a time.

One Disney princess fashion show at a time.

One play-doh masterpiece at a time.

One dance class at a time.

One basketball practice at a time.

Each and every experience will play an important part of shaping the person he will become. Even dressing up in princess gowns.

Maybe he will grow out of it. Maybe not. The fact the matter is that either way; I don’t care. I only care that he keeps his spark. Keeps his magic. I only hope that he finds who he is and holds tight to it. That he continues to live a life that is bold and creative. That he never worries what other people need him to be. Or need him to do. Or need him to think. Or need him to wear.

This is my simple truth, the only thing I will every truly need my children to be; is happy. The rest just doesn’t really matter.

JS