Dear Danny,
Today is World Autism Awareness Day, yet again.
The first time I wrote to you about Autism was this day in 2013, and while that seems like it has to have been a lifetime ago, the math doesn’t lie: 4 years. An eternity and yet an instant; minutes and days gone in the blink of an eye.
4 years ago I knew what to say on this day. I was new to the conversation, and I felt a sense of community in the puzzle pieces and blue lights. As the years went on and I found other resources and more authentic voices to rally behind, I tried to adjust my words and my actions based on what I had learned. I follow blogs and websites and journals; I am invested deeply in the lives of children I will never meet. I gain perspective and hope as I read the writings of autistic adults; some who have made a way in the neurotypical world, and others who have not. Or will not. Or can not.
And if there is any one thing – one common thread that seems to run through all of these writings it is this: I am doing it all wrong. One day you will grow up and be angry with me for the way that I have documented your life. I don’t understand, and can never understand, anything about what it is like to be you.
So, you know, #parenting? Or something like that. I’m pretty sure that much is true for all of us.
When I started writing my thoughts down for the invisible audience on the other side of the screen, my only intention was to help the world see you the way that I see you. I wanted to make it clear that we were absolutely in love with our little boy – that the challenges we were facing and the joys that we were experiencing were one in the same. Not one without the other.
But soon into the endeavor I started to see this as something more. Because I know – I know – we are doing many things wrong. I know that there are gaps in your understanding of the changes that you have faced. You know whatwe’ve done, of course. But when you need to know why…maybe you can start here.
I could no more tell you what it is like to be autistic than I could tell a bird what it is like to fly. Your story is yours alone to tell. But for now, these are my words. And I am not speaking for you, Danny. I am speaking to you.
So today, on our 4th time experiencing World Autism Day together, I want to tell you the single greatest thing I’ve learned in the years that we’ve been on this journey. It isn’t any single thing that we are or are not doing or any one decision that we’ve made.
It is the shape of the path, and how to pace myself to walk it with you.
4 years ago when your Dad and I first stood in the valley and looked up at the mountain of uncertainty that had formed in front of us, we could only see the rocks right before our eyes. On that first climb we were lucky if we ever saw further ahead than the next step.
You qualified for services.
Step.
We met the teachers and the specialists.
Step.
We had the meetings and the observations and the interventions.
Step.
We found the first thing that worked. Really, truly worked.
Step.
And before we knew it we were standing at the top. And it was so beautiful and clear. We let out the breath we had been holding since the foot of the mountain and lifted our eyes to look around for the first time.
That is when we realized what should have been obvious…there is more than one mountain.
And we would need to climb them all.
Now, 4 years later, it is easy to love the ascent. There are difficult moments in these times, but they pale in comparison to what we gain. Milestones are met, goals are set and achieved; relationships and friendships are formed. We’ve learned not to care how long it takes us to get to the top as long as we are still moving.
But at the peak…we want to stop time altogether.
It is the easiest to love the peaks. Those all too brief times when everything falls into order. When we look at each other and exhale, realizing that even now we still hold our breath the entire way up. We see the other mountains in the distance and we know they are spectacular but we just want this space to last forever.
So when the first rocks start to fall, we speak quietly…trying not to set off the avalanche we know is coming. We whisper excuses and pretend not to see the ground shifting beneath our feet.
It is the hardest to love the fall.
The fall makes us question everything; makes us wonder if we have ever done anything right or if we will ever make it up the mountain again. While I will never know exactly how it feels for you in these periods, I know that for me it is suffocating. It is isolating. It is being blanketed in doubt and turned around so many directions that I am not even sure which way is up. It is weeks where the days are long but the pace is frantic. It is uncertainty – expecting the phone call, waiting for the other shoe to drop.
This is the secret though, Danny. This is the simple truth that gets me through the fall:
We are always moving forward.
We start at the foot of the mountain and we load up all the equipment that we’ve accumulated over the years and we set out for new and great heights. And when we get there, it is so easy to want to stay. But when you have reached the top of the mountain the only way to stay there is to stand still. Even on the way down, even as the avalanche sweeps us up in its power and we feel helpless and hopeless, we still end up further down the path than we’ve ever been. And when the other shoe finally does drop, you might just find that you have both feet on solid rock again.
Powerful things happen in the valley. My decision to change careers came during a complete free fall. Our decision to seek help for you, the help that became the foundation of every mountain since, came from the lowest point of them all.
It is hardest to love the fall, but it is the most important part.
In recent days, we have been in a bit of a slide, culminating in you bringing home the worst daily report of your 2ndgrade year. When I received the details via an email from your teacher, I was disappointed but not surprised.
I came home and asked you about it, expecting that you would “shush” me, or otherwise let me know we were not going to discuss it.
I could tell that is what you wanted to do.
But instead you told me the story. You told me what you did, and what some other kids had done. It was immediately obvious to me that you had lost it in class because you felt unfairly punished for something that you felt everyone was doing, but when I asked you why you didn’t tell your teachers everything that you had told me, you didn’t have an answer.
The next day at a birthday party two of your friends got into an argument. Quickly and without hesitation you flew through the door to call for help.
As we talked later about what had happened at the party, I told you how proud I was that you asked for help. I reminded you that you can always use your words to advocate for yourself.
Calmly and confidently, in the way that you that you sometimes talk to me with striking clarity, you told me that you only “tattled” at the party because you thought someone might get hurt. No one was getting hurt at school.
I flashed back to the guidance lesson you brought home several weeks ago about tattling. A lesson that I am certain the counselor thought was way beyond that red head shifting in his seat, ignoring the directions and coloring the cheerful “No Tattle Tongue” worksheet into rainbows. A lesson I have to admit that I would not have attempted with you myself.
And just like that, from this valley, we start to climb.
We’ve seen the heights and the depths of what this life can throw at us, and we are just getting started. But knowing the shape of the journey has allowed me to see, over and over again, that every peak has been worth leaving; to remember that no valley has ever been permanent and that every climb has been worth the fall.
And one day we will have climbed enough mountains to be able to write this story together, kiddo.
Just you wait.
This Joyful Noise 