To All of the Autism Parent Warriors Out There –

I see you. I really see you. I see you because I am you.

I know the thoughts in the deepest and darkest corners of your brain. I know your fears. Your pain. I know that you are exhausted from this long journey. A journey that is only just beginning. I know that you are questioning everything. Every behavior. Every word. Every social interaction. I know that your heart and your head are working in opposition.

I know that you are scared. I know that this is bigger and harder than you were prepared for. It was bigger and harder for me too.

The road to an autism diagnosis is not for the faint of heart. It is long and winding. It calls on you to be braver and more patient than you thought that you could be. It shakes you to your core. It forces you to look deep inside of yourself time and time again. To find the will to keep pushing forward.

And after all of the referrals and the tests and the appointments you are surrounded by words that you never imagined would be part of your parenting story; your child has autism.

These words take your breath away.

So much so that for a while after the diagnosis you cannot say the words. You actively hide from them. You use all of the strength and energy that you have left to block out the words. To block out the diagnosis.

And like a wave, more fear rushes in. You fear things that will happen right away. And, you fear things that are far in the future. You fear the finality of a lifetime diagnosis. You fear things that you do not completely understand yet.

Your instincts will tell you to run.

You ignore phone calls from the people you love. You start to communicate only in text. Because somehow typing the words is easier than saying them out loud. Or, hearing them out loud.

It is ok for you to feel scared. It is ok to meltdown and lose your mind. It is ok to cry. To ask “why is this happening?” It is ok to retreat. To protect yourself. To create a safe place to heal. To mourn. To figure out your next move.

It is ok to be angry and confused. It is ok to wonder if you have what it takes. It is ok to be jealous of your friends who are not on this journey. To question whether or not you can do this.

But I promise you this:  you will do this. The love for your child is bigger than your fear. Always.

Today autism feels big. Too big. It feels like it has taken control of you. Of your family. Of your future.  And, it will probably feel that way for a while.

You will learn that autism is ever-changing. But, you will also learn to change with it. You will learn that autism is unrelenting. But, you will also learn to be unrelenting in your response. You will learn that autism does not recognize boundaries. But, you will also learn to set and enforce boundaries of your own.

You will learn a lot of things along this journey. About autism. About yourself. About the power of love.

Standing at the beginning of this journey I was filled with questions and doubts. And, I still have a million questions. I still have moments of fear and uncertainty. But, along the way I became someone so much bigger than the person I was at diagnosis. I am stronger. So much stronger than I ever dreamed I could be.

I see you. And I know that you are strong enough to walk your journey. Just as I am strong enough to walk my journey. We are strong enough to walk this journey together. United. In our love for our children. In our fight against something big and scary. In our determination to never give up.

I know this scary. I know you are scared. But, you are not alone.

Jessica, Fellow Autism Parent Warrior

 

This is last picture that I took of my son before he received an official autism diagnosis.

I see a sweet and magical little boy. A boy filled with big emotions and big love. A boy who has taken our world by storm in all of the most wonderful and terrifying ways. A boy stronger and more steadfast than I ever imagined he would need to be.  I see the twinkle in those big brown eyes. The joy in his smile.

I look at this picture and my eyes see the same boy that I see in pictures today. The difference is not visible to the eye. But my heart can see. My heart knows that this photo marked a change. An end, and a beginning. In this picture he was not diagnosed with autism spectrum disorder.  And in every picture that came after, he was.

I took this picture in the car on our way to his diagnostic appointment. Our literal journey to diagnosis.  But, our true journey to diagnosis started long before that car ride.

The first time I thought “this does not seem normal” happened during a family trip to Florida in September of 2012. At the time my son was eighteen months. Something was just off. He was not himself. He screeched constantly, and not in a normal little kid way. He seemed uncomfortable in his own skin. None of our normal tricks helped him to calm down.

Over the next 6 months I observed all of his developmental and social behaviors. I became more and more aware of his same aged peers around us. I knew that his speech was developing slower than usual. I knew that he withdrew from other kids in social settings. I understood that the shrieks and screams that he used in lieu of speech were not typical. And despite everyone’s encouragement to let him develop at his own pace and not compare him to others; I just knew in my heart that something was not right.

I went to our 2 year old check-up in May of 2014 filled with questions. Luckily, we have an amazing pediatrician who listened without judgment to all of my rational and irrational first time parent rantings. She agreed that many of his behaviors were indicative of delays. To know more, we needed to know more.

We were referred to the Birth to 3 early intervention program in Walworth County. Within a few short weeks we had our initial meeting with Birth to 3. In June 2014 we began receiving in home therapy for speech and behaviors. I felt so comforted to have people in my home to discuss all of his behaviors and symptoms. It was very validating for my “mother’s intuition”.

I remember the first time someone used the word “autism” in reference to my son. I remember it because it cut me like a thousand knives to the heart.

From that moment forward everything seemed real on a new level. The stakes were higher. The fear was greater. The need to know became paramount.

In September 2014 our Birth to 3 team advised us to complete the necessary hearing check and pediatrician referral to get on the wait list for the Waisman Center in Madison, Wisconsin. When our team suggested the appointment they told us that more than anything it was to officially rule out an autism diagnosis. We completed the hearing test and got on the waiting list for the waiting list. At that time the center was under-staffed and 6-8 months backlogged on appointment.

In December 2014 we were scheduled for an appointment in April 2015. Another 5 months seemed unbearable. I turned to a close friend who pulled strings and got us into a hospital in Iowa in February 2015. We put the date on the calendar and somehow managed to move forward through the holidays.

In January 2015 Grayson was referred to the Early Childhood Program in our school district to begin planning for his service transition at his 3^rd birthday in May when Birth to 3 services would end.

On February 23^rd it was time to head to the Children’s hospital in Iowa. A task that felt equal parts relieving and daunting. I looked back at my sweet little boy in the back seat and thought about all of the hopes and dreams that I had for him. I knew that we would leave the day with answers. I took a lot of deep breaths. I convinced myself that I was strong enough to handle any outcome. I had to be.

We started the day with the ASOS evaluation.  My husband went into a room with my son and 2 therapist while I watched via video from the conference room. My instinct was to be in the room with my son. But, in the conference room I was surrounded by people who could answer my questions. It was the first of many “business” decisions I would make along this journey.

Before the test started my son started began shrieking. And something inside of me changed. I looked over to my friend, a speech therapist who kindly joined us for the rigorous day of testing, and said “we are leaving here with an autism diagnosis, aren’t we.” It was a statement more than a question. But either way she answered, “it is going to be a long day Jess. Let’s take it one moment at a time.”

The 7 hours of testing seemed to go on for days. During the down time we walked with Grayson to the cafeteria or to the gift shop to pick out a special treat. He thought that the hospital was a new and exciting adventure.  His face beamed with a smile every time he ran up the ramp. He looked in bewilderment up at the balloons in the gift shop display.

The reality of the day meant nothing to our sweet little boy. But the reality of the day would change his life forever. It would change all of our lives forever.

At the end of the day we walked into the conference room and took our seats. My hands fidgeted in my lap as I looked around the room. The room was quiet except for the sound of my son spinning in a chair. And then from across the table someone spoke. As the words came out everything around me grew quiet and still. Frozen in the aftermath of the words that changed our lives forever.

My son has autism.

JS

 

 

 

I knew that becoming a parent meant juggling a number of different roles. I am the mom, the planner. The guiding light.  I am the ouchy healer and the bedtime snuggler. I am the confidence booster and the ultimate cheerleader. And because my son is a puzzle; I am also the puzzle master.

When my son was diagnosed with autism spectrum disorder at two years old; we began unlocking the complex puzzle that is his brain. We did not know what to do with the pieces. We did not know where to start. We were scared. Scared that we did not know what to do with the pieces. Scared that the pieces may never fit together.

And, in that moment we could have given up. But we did not. Because the rules of parenting are actually quite simple:

Rule 1: Love your children fiercely. No matter what.

Rule 2: Protect your children and keep them safe. No matter what.

Rule 3: Be what they need you to be. No matter what.

And if my son needed me to be a puzzle master; then that is exactly what I would become.

My precious little boy is so complex.  His brain works in a way that leaves me feeling both amazed and terrified at the same time.

He is smart and calculating and strategic in everything that he does. There are no accidents. His actions are intentional. On-purpose.

At age one he used to intentionally throw his snack cup on the floor. After watching the cup hit the floor he would look up at us, gasp, and say “uh oh”. In those moments we laughed. We picked up the snack cup and said “Silly boy, it is not an accident if you do it on purpose.”

That sentence has become a defining sentence in our life. Trying to teach him about the consequences and rewards of his intentional maneuvers. Reminding him that sometimes the right thing to do is not the most logical thing to do. Because on his own he does not account for the human factor. It is unnatural for him to think about his actions in relation to other people’s feelings. It is easy for him to disconnect that way.

This is hard for me to understand. It is hard for me see him laugh at the sight of someone crying. It is hard for me to understand how someone so sweet and full of love and warmth can be so cold.

And then I remember that he is a puzzle.

When I believe that I have seen every side of his personality; he reveals a new side to me. When I think I know all I need to know about who he is and what makes him tick; he starts ticking in a different way. When I start to feel over-confident in my ability to plan and prepare for his behaviors; he throws me for a loop and shakes my confidence.

He is ever moving through his puzzle. Ever changing. And he is ever willing me to keep up with him. Physically. Emotionally. Mentally. He wants to take me on his journey.

I give it my best effort. And sometimes, even if only for a short while, I can keep stride with him. Then in an instant he is miles ahead of me soaring and twisting and turning in directions that I could not predict.

And he grows frustrated when I cannot keep up with him; physically, emotionally, and mentally. He does not understand why I cannot keep up. He grows frustrated as I fall further and further behind. And from so far back I wonder if he can still see my face. If he can see my longing to be beside him. I need him to know that I would give anything to keep his stride. To follow his journey. To let him lead. To be led.

I plead with him to slow down. To come back and show me the way forward. I ask him if we can take it more slowly, together. And even though he does not want to come back for me, he does. We begin to move forward again. He starts slowly alongside me. And then again, all too quickly, he is out of my reach.

Part of my journey as a parent of autism is to put my faith in things I cannot see. I cannot always see where he is inside of the beautiful puzzle of his mind. I can rarely tell where he is headed. My job is to teach him about kindness and compassion. To help him understand the way his behaviors impact the world around him. And the way the world around him impacts his behaviors.

My son is a puzzle. To me and to the world around him.  But I have learned that is it the pieces that make the puzzle and not the other way around.  I see all of the pieces of my son. It is not always clear to me how they will fit together. But, I see them. And, I will keep seeing them. Until one day, when all of the pieces just fit.

JS

My son Grayson does not see in gray. Ironic since the word is literally in his name. In fact, we typically call him “Gray”. But, his entire world is black or white. Happy or sad. Hot or cold. Up or down. Yes or no. The idea that something can exist in the middle does not make sense to him. The thought that a person can feel more than one emotion at a time is confusing. The concept of the distant future is very unfamiliar for him. My son thinks about what is happening now. Right in this moment.  The scenery. The sounds. The people. The feelings. The weather. He lives 100% in each moment soaking up every last detail. He is like a sponge that way. As he exists inside a particular moment he is reverting all of it to memory. Putting every piece of that moment into carefully organized files in his brain. This is exactly how he will remember this moment. And this is exactly how he will need this moment to be in the future. Re-living the same experience in a new way is very difficult for Grayson. He cannot escape his memory of the moment. He struggles to imagine things in new and different ways. This is not a choice that he makes, this is just how his brain works. Black. White. Up. Down. Yes. No. Nothing more and nothing less. And, nothing in between. The beach, a movie, play dates, dinning out, the zoo. Every experience, big or small, becomes a memory. And the memory becomes a script. Sometimes we fail to understand the true depths of the intricate way that his brain is organized.   And time and time again we are blown away. Blown away by the power of his beautiful brain. Amazed at his ability to recall even the most obscure of details. This is both a blessing and a curse. I love the detailed memories that fill his brain. I love that he is sentimental. I love the way he remembers people and places that we do not see as often as we would like. I love the way joy washes over him as he remembers something truly blissful. His eyes light up as he spins around and takes in the scenery. Remembering. Filling in the holes. Recreating the moment just as he has stored it away in his brain. But sometimes those memories create  obstacles. Because as you and I know, moments very rarely go the exact same way the second time. We often explain to our son that we can experience the same thing in different ways. This seems like such a simple concept to me. But, this concept is far from simple to our son. There is no gray. Did you know that the color gray is the color of compromise? In that sense, there is no surprise that my child cannot see the color gray. Compromise and autism are opposing methodologies. Autism is rigid and unrelenting. It takes what it wants, when it wants it. Compromise requires registering the emotional and logical existence of something or someone else. A pretty difficult concept for someone who sees the world one way. His way. Emotions are hard. Logic is hard. Compromise is hard. So many things that seem so easy are so hard along the autism spectrum. My son Grayson is not gray. Not in any sense of the word. In so many moments he is unrelenting and uncompromising. He is rigid and holds firm to his needs. He sees nothing wrong with his polar view of the world. Why? Because he does not know any other way. He doesn’t know that the middle exists. I live in the  middle. Me and my typical brain live in the typical middle. Willing my beautiful boy to join me. And maybe he never will. So I have learned to join him from time to time. To let go of the middle so that I can be closer to my son. And I can only hope that one day he will let go of his polar end to be closer to me. To friends. To family. To a life that is so much more than black and white. JS