Dear Danny,
On September 2nd 2014 my alarm went off at 4:45 AM, signaling the beginning of the school year schedule and the end of calm, peaceful mornings as we had come to know them. I packed up the supplies that hadn’t made it with us to Back to School Night, and put together a lunch full of your favorite things for your first day of school. The last step was to get you out of bed, dressed and into the car by 6:05. At 6:06 I turned around to face you in the back seat. “Happy Birthday, buddy!”
You returned two long blinks and an outstretched hand: “Thanks. Pop tart?”
And so began your 5th year on the earth – with a flurry of activity, a haze of exhaustion, and an entirely – amazingly – typical conversation.
It has been quite a year, kiddo.
Since your last birthday you have mastered many things – the list of skills that you add to your repertoire every week is astounding to me. You have become independent and confident. You can read and write your name. You can ride your scooter around the block so fast that your Daddy has to ride a bike to keep up with you. You “watch for cars” when you get to a road. You can navigate nearly any electronic device you encounter. You can watch TV programs and movies and truly understand what is going on. You talk.
You talk.
And while we still have a long way to go with that last one, the progress you have made in the last year has been nothing short of a miracle. This year you are going to Kindergarten – a full day program filled to the brim with content, therapy, field trips and special programs. Your teachers are positive and energetic and your classmates are bright, happy, chatty little people – just like you.
Right around your 4th birthday, something really exciting happened in your life: you made some new friends. We all did, really, and those friends have had such an impact on our family that it would be impossible to explain this past year of your life without talking about them.
I am completely certain that you will remember Miss Jen – her family, her friends, and her beautiful children – for the rest of your life.
I am completely certain that you will remember Miss Jen – her family, her friends, and her beautiful children – for the rest of your life.
You see Danny, about 6 months before we met Miss Jen, a lot of things went wrong – things that made me question how we were spending our time as a family and how I would continue being a part of some of the things I loved. I was so emotionally worn that I’d convinced myself that the only solution for both of us was a total withdrawal from anything that wasn’t mandatory. I was wrong, of course. I was just too tired and scared to see it.
There is a popular writing that surfaces from time to time called “Welcome to Holland”. It is an essay that tries to explain what it is like to parent a special needs child by comparing it to planning an elaborate vacation to Italy, only to arrive fully prepared for the time of your life…in Holland. That essay shows up in Autism communities a lot and while it rings true for many, I’m sure, I just never accepted it as our story. I always felt like I’d gotten off the plane in “Italy”; I just never seemed to know where I was going.
But this year we met someone in this foreign land who was speaking our language. Who already knew where to find good music and cool coffee shops. Sure, we may travel in different parts of the city than our typical counterparts, but that is because we aren’t tourists – our trip has no defined ending, or guaranteed flight home.
So now instead of isolating ourselves we take risks – we go to the playgrounds, malls and parties. We send you to camps and choir practices and trust you with your peers. We push you further than we would have ever imagined a year ago and slowly the walls are coming down. We try everything, and then we try it again.
Physically you have grown into a strong and athletic boy – full of long legs and elbows. Save for the mass of red curls all over your head, there is not a trace of the tiny, chubby baby we met 5 years ago. You are 100% kid, whether we like it or not. I have worried for years that your looks and strength betray you – that people expect more of you because at first glance they believe you to be older and more capable than you are. I knew that I was relying on words like “toddler” and “preschooler” to explain your behavior, and I dreaded the time when I would have to reach for “Autism” instead.
It isn’t always popular in the ASD community to acknowledge that this life is not easy. Not for you. Not for us. Yes, there are those great days. When the routine goes smoothly and plans work out and everyone eats well and gets enough sleep…I look around and sigh and say, “yes, this is perfect.” I rally behind puzzle pieces and internet memes and I think – I know – that we can conquer the world.
But other days…when transitions are hard and fun activities disintegrate into melt downs. When a non-preferred activity causes a tantrum that lasts the entire weekend, or when a request to play outside is denied because of a thunderstorm and we spend the next hour in bed huddled under a therapy blanket. On those days I fight to keep this singular thought from taking root in my heart: We don’t deserve this.
Because of course, no one does.
And for better or worse…Autism is a part of who you are. If it was possible to separate this dragon from your castle I would slay it with my bare hands just to hear you tell me about your day. Just to know that you would tell me if you were hurt, scared, or sad. Just to be sure that you understand us when we tell you how much we love you.
But the fact of the matter is that this dragon is both strong, and wonderfully magical. And since he has made his home in you we’ve had no choice but to befriend him, admire his beauty, and do our best to avoid the flames.
One day I hope you will find the words to tell us the whole story, the one I know is forming in your beautiful mind. I hope your bright eyes and endless laughter mean that the story is a happy one, and that you don’t hold the bad moments against us. That you will forgive us for the things that we have had to say and do to keep you safe in these years where our communication has been so limited and your behavior so unpredictable.
“Behold, I stand at the door and knock. If anyone hears my voice and opens the door, I will come in…” Revelation 3:20
We have a picture in our house, Danny: Christ at Heart’s Door by Warner Sallman. It came from my Grandparent’s house – a place as sacred to me as a child as my parent’s house is to you now. I asked to keep it because the lesson behind the picture has always been profound to me. In the image, Jesus is standing outside a closed door surrounded by flowers and light. I remember staring at this picture as a little girl trying to figure out what was so special about it. When I eventually realized that the wooden door didn’t have a knob, I asked my Grandmom why. She answered that it was the door to the heart – those doors can only be opened from the inside.
You are a fan of doors, little man. It was your very first interest and is still your “go-to” activity when you are stressed or upset. Your doors have enabled many things in our lives. They were the foundation that our first games and communications were built on so your Dad and I…well, we’re fans of doors too. The thing is – most of the time no one is allowed to touch your doors. You stand on one side of whatever you have created and call for us to come through. You have always been the gate keeper.
So it is with your games, so it is with your mind. So it is with your heart.In the beginning the door was so imposing and you were so far away. We’d stand at the door and knock but you couldn’t hear us; we’d press our faces to the wood but you couldn’t see us.
But now more and more I feel like I see you peeking through the slats from the other side. We’re so close now, Danny. You’ve unlocked the door; we just need you to open it.
Knock knock.
This Joyful Noise
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