We have shared our lives with an Autism diagnosis for 8 months now.
That is the triumph of our last year. And yes, I mean triumph, as strange as that may sound. We spent much of your 3rd year chasing a “word”. Naively, I believed the word we were chasing was autism, but we had already captured that one. The word we actually needed was diagnosis – a word that changed everything by changing nothing at all.
Because of course we knew, didn’t we? It wasn’t a surprise. When we found the right doctor it wasn’t even a question anymore. The why’s, where’s and when’s faded into the background – only how’s as far as the eye could see. This word had yielded a plan, and we were off.
It is difficult to explain what this last year has been like. Our wins have been nothing short of miracles and even our losses were filled with profound lessons, measures of mercy and grace. You are who you have always been, but we are catching up. The world is catching on.
Once again, today is World Autism Awareness day – part of a whole month dedicated to getting society to recognize the beautiful gifts of the autism community. Many people will wear blue, the schools will decorate puzzle pieces, and some businesses will “Light it up Blue” – all with the goal of increasing support and acceptance for individuals and families affected by autism. Inside the community there will be debates about which organizations have the best intentions – who reaches the most people without marginalizing them. There will be debates and blogs and protests but, mainly, there will be conversation. In my book, that means that they are all doing something right.
In the biggest picture, Autism awareness should have many effects. It should result in compassion, creativity, and courage – a dedication to helping individuals on the spectrum grow and learn. It should go beyond awareness and into acceptance, even love. In the smallest picture, the one I see from behind my own eyes, it means much more.
“Come,” Jesus said. So Peter went over the side of the boat and walked on the water toward Jesus. But when he saw the strongwind and the waves, he was terrified and began to sink. “Save me, Lord!” he shouted.
Jesus immediately reached out and grabbed him. “You have so little faith,” Jesus said. “Why did you doubt me?” Matthew 14: 29-31
You were about 18 months old when I first saw this storm in front of me. When I started to see the waves lapping the sides of the boat my first instinct was to wrap you in my arms, bow my head, and hope for it to pass. We stayed like that, huddled safely in the boat, for a long time. Occasionally I would hear the call to come out on the water, but…you were so small, and the ocean was so unforgiving. I reasoned that I could do something – parent better, read more, work less. I could fix everything, and we could stay in the boat forever.
But the call came over and over again, until it couldn’t be ignored a minute longer. I took the timid steps out onto the water and took you to your first evaluation. I was surprised by how wonderful the specialists were – how helpful and kind. I stood confidently through test after test, certain that the storm was passing us by, until one specialist brought autism into the discussion as though it should have been obvious. I felt the water rising up around me – the clouds were as dark as I’d remembered. The ocean was as deep as I had feared. I cried out “Save me!” and just like that we were back in the boat, pretending that the waves had all been a bad dream.
“If I had to listen to that every day, I’d kill myself”
That is the worst thing anyone has ever said to me about you.
We were waiting in line to check out with a cart full of groceries and you were chatting to me about the doors opening and closing behind you.
Honestly, I was shocked anyone could even hear you.
I was leaning with my elbows on the cart, trying to make sure you knew how interested I was in hearing you talk about something that was clearly so important to you. At first, I didn’t even notice her staring.
And there were those awful words hanging in the air, heavy and low.
For the first time in ages I didn’t know what to say. I had prepared myself for the reality that your behaviors would make you stand out – that there would be people in the world with little patience for your routines, your temper, or your perpetual motion. It didn’t ever occur to me that at your best, you could still attract the attention of someone who might say something so awful about a child. Any child.
I will never think about autism awareness in the world without seeing her face. Without remembering her giant wedding ring and bags full of juice boxes and crackers that made me believe that she was a Mom. Without remembering how she looked straight at the most beautiful thing in my world and saw only an inconvenience.
For awhile I had convinced myself that once on the water was enough. We ventured out, we fell, we asked for help and we received it.
But of course that isn’t where our story – or anyone’s story – ends.
Every time we need to make a new decision – an IEP, a placement, a new specialist – we must commit ourselves again to stepping out into the waves.
Any time my fear convinces me to keep you at home, to avoid a new place or new people, I am taken back to being huddled up with you in that boat.
Fortunately, the Voice that calls me out onto the water does so without ceasing. When I am most afraid, I hear caring teachers who remind me that I can trust you, wonderful friends who remind me that I can trust myself, and your own tiny voice – a beautiful sound that I hear more and more often these days.
My commitment to autism awareness now is to listen for those voices. To recognize when I have simply built a bigger, more comfortable excuse for myself instead of pushing us forward.
I can’t promise that the seas will be calm, or that we won’t end up in the water more often than not.
I can only promise to get us out of the boat.