There is a numbness that settles in after diagnosis. It is a numbness that takes over every part of you. Instantly. In the moments after diagnosis it is as if someone outside of you reminds you to breath. In and out. In and out. Breathe. You cannot survive unless you keep breathing. And this goes on for a while. You breathe because you know you have to. You breathe because even after everything else; you know that you need to push forward. To live. To fight. And so you breathe. The breathing feels heavy, forced. The numbness washes over every part of you. It tunnels your vision. The only things in the world that matter are your child and the life sentence they have just been handed down.
And because you do not know what else to do; you do nothing. You do nothing for a while. You do nothing until doing nothing is no longer acceptable. You do nothing until you realize that doing nothing is getting you nowhere. I know that my words are hard to hear. I know that it is sad to imagine us in such a low place. But we were there. We lived there, alone, for a while. We did that because it is a part of the process. We did that because what was happening to us is real.
In the autism community they refer to the time after diagnosis as the mourning. People who have experienced death may have a difficult time with my using the word mourning to describe what we went through. Let me say that I truly mean no offense. Having lived through this time, it is the word that most accurately captures the way that I felt. My heart felt heavy. My hope was lost. We do not always know the perfect thing to say or the exact way to move forward. And, it was our mourning following the diagnosis that gave us the permission we needed to completely fall apart. To have no clue what to do next. To feel lost and scared and alone. And then from somewhere inside of us that we did not even know existed; we found the strength to rise above together.
Look, the things we talk about here are not comfortable. They are real. These are real things that happened to us. And they are real things that could happen to anyone. For me, giving our experience words feels like giving our experience wings. We’ve talked about diagnosis. About hearing things about your life, about your child, that you never thought you would hear. This is about what comes next. The mourning. The pain. Finding the strength to move forward.
Driving home from the diagnosis is a blur. I know that we got home, paid the sitter watching Rowan, unpacked our luggage, started laundry and went on with our normal nightly routine. I know that we did these things because we had to do these things. But I do not remember exactly how I programmed my body to get through these things. The numbness set in fast. It took over every part of me. I remember feeling like I needed to snap out of it, but I couldn’t. The best way I can describe this time is feeling like EVERYTHING and NOTHING changed all at the same time.
Grayson was still the exact same person he was when we walked into that hospital. He had the same behaviors, the same limited speech. But somehow; our life trajectory seemed completely different. In that moment everything was different. Harder. He was the same. We were the same. But everything felt different. He felt smaller, more precious. He felt like something we needed to protect. During the days after the diagnosis I would often catch myself staring at Grayson. Trying to see the autism in him. It didn’t matter that my head knew that it was there, my heart just did not want to see it. So I would stare at him and will it away. I would find ways to argue about diagnosis being incorrect. I Googled so many times about 2 years olds being mis-diagnosed. I Googled about 2 year old autism and hoped to find that most often it turned out to be anything but autism. I needed it to go away. I needed to rewind the clock to a time when we lived in hypotheticals. To a time when Gray was just speech delayed; nothing more, nothing less. I needed those things, but I needed them for me. I needed them because they helped me move forward, but they did not help my son move forward. So I found the strength to push those thoughts away. To dispel my hopes that this was just all one big misunderstanding.
For the first few days I could not say the words out loud. Even to my very best friends and my parents. I could not say the words; so I wrote them. And as I wrote them tears pooled down my face. As I wrote them my head filled with fears and worries and sadness. I mourned things that I didn’t even have yet. My head raced to middle school sports and high school prom and college and weddings and children. I dreamt up all of the worst case scenarios and pictured a life for Grayson that was much more difficult than the life I dreamed up while I was pregnant. The fear and the worry took over my brain.
I went to work during the day but I was just existing there. I sat in a daze letting my head fill with fear and worry. I would stare blankly into space and search for the strength to snap back into reality. At home I would do my best to be the mommy that Grayson and Rowan needed, but I just wanted to crawl into bed and pull the covers over my head. I wanted to be somewhere else, anywhere else.
Sometimes I did have to hide away. Sometimes I would wake up at 3am from a deep sleep and find myself sobbing in bed. My husband would roll over and put his arms around me and just hold me while I cried. I was crying for Grayson. For the life I had dreamt up for him; and for the harder more challenging life I now knew he would live. I cried for myself. For the sadness over lost friendships and changing ways. I knew that the diagnosis would change our course; so I mourned the old course. The old friends. I prayed that they would make the journey with us, but I mourned the idea that they may not. I mourned the idea of having a conversation with my 2 year old. I mourned the milestones we would not pass. I mourned the school I was told we would have to leave behind. I mourned the friends at that school that Grayson and I would have to say goodbye to. I mourned the idea of starting over at a new school. I mourned the idea of being different.
At that time I felt like autism was an ugly mole that I had to hide away. It was something that I needed to control; to hide. I was not sure yet what Grayson having ASD said about him, about us, about our life. I needed it to be something that we kept close to our hip. And so we did. We circled our wagons and tightened our circle. We kept ourselves safe from the outside world. We stopped going out completely for a while. We felt completely alone, on an island. That first 3 months after diagnosis we tried to exist alone. Our families were far away and we were living life minute by minute together. We knew we would make a million mistakes, but we did not know any other way to move forward. People often ask about James and I and our marriage. They read the reports about autism and divorce. But, I will tell you this….we went through this together, every single step of the way. And it has bonded us in a way that most people cannot imagine bonding. Sometimes our life feels like a pressure cooker for our marriage, but when we step outside and look in we realize that we are handling everything life throws our way with as much patience, understanding and grace as we can muster. Sure, we are not perfect. But our life is not perfect. And we give each other permission to be imperfect.
You see, during all of this mourning we still had a life to live. I was still a mom. We had to keep moving and shaking and living our lives. In fact, it may surprise you to hear that during this time of such intense mourning, I arranged all of Grayson’s Mercy Options Treatment. I spent countless hours on the phone. I prepared paperwork and documents. I attended meetings and answered questions. Doing the best thing for Grayson; fighting for him and his services was like second nature to me. In fact, it was the only thing that truly let me escape the mourning. It was the thing that gave me life. Fighting for Grayson became the thing that I was best at. And quickly I learned that my voice mattered. I learned that picking myself up and finding a way to fight was the only option.
I do not think that ending the mourning was a decision that entered my brain. One day, it was just over. I am not going to lie to you; there are still moments on this journey that send me to the fetal position. There are moments or days or weeks that feel like they are just going to swallow us whole. I tell myself each day that I can be better than I was the day before. I can fight harder or be more patient or find more energy. I set expectations of myself that I know I will never live up to. Sometimes as words leave my mouth I know that they should have been different or in a better tone. I still mourn things. I still feel sad about missed experiences or opportunities that pass us by. I still hope that our future path is less full of challenge and struggles. I still pray that the people in our life find a way to relate to and accept our journey. I still feel all of these things because they continue to be very real for us. For the longest time I felt like I had to protect my journey and maybe even feel shame for it.
Today I understand that the only shame I feel is for the lack of understanding and compassion from other people. This journey is only what I make of it. So I choose to give our story wings. I choose to put words to the things that no one explained to me after diagnosis. I’ve said before that I wished there had been a tour guide or a book to walk us through the steps after diagnosis. But, the kind of book I needed did not exist. I needed someone to tell me that it was ok to completely freak out. Like, for a while. To lose complete control of my emotions and my logic and my reason. To lose hope a thousand times. To question and run and hide. To make autism something scary hidden in a box, under a blanket in a deep dark closet. I needed to know that it was ok to leave it there. To keep is locked away. Until I was ready. And then I needed to know that I could slowly let it out. I could first remove the blanket. And the move the box into the open. And then let the autism out of the box. And the embrace it; live with it. Grow with it. Even learn to love it. I need to follow this journey. And I think this is something that other people experiencing diagnosis need to be told. FREAK OUT. Because it sucks and it is scary and it is something that you never imagined on your path. Freak out until it is less scary. Until it is something that you can imagine living with. Freak out. And then, move on. (If you remember, my 4 year old taught me that!!)
The morning after the mourning is calm like a calmness you have never known before. It is peaceful and steady. It is an understanding that life if different, but you are ok. The morning after the mourning has come. And so you move forward.