Navigating Diagnosis; Again.

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…

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