Along the autism spectrum you learn to prepare yourself for disappointment. Not because you are a matter; because you are smart. Preparation lessens the impact of the disappointment once it hits.
But while preparing for disappointment you start to make lists. Lists of things you can’t do. Experiences you won’t have. A life you’ll only partially live.
And you live within the boundaries of those lists. You level set your expectations time and time again. You see the life you imagined slip away. You learn to make a home inside of a life that is defined by the your lists and disappointments.
But I am here to tell you that this life, an autism life, can be so much more than the tight corner boundaries and disappointment you box ourself into. Not always, and maybe not forever, but sometimes this life is every bit the life you imagined. No lists of things to avoid. No asterisk on your experiences. Sometimes the autism life does not feel like an autism life at all. Sometimes it is just a life.
Today my 6 year old son is at a water park. It is loud and chaotic and filled with unfamiliar people and sounds. We were here in this exact spot one year ago. A fact that is enhanced every time our son reminds us of the color of the slides and umbrellas around every turn. But this experience is completely different from last year.
Today he waits patiently in line; sometimes up to 30 minutes. Today he is joyful and excited, but also calm and collected. Today he is fearless. Today is running with the pack. Today he is tapping a child on the shoulder and saying “come slide with me.” Today he is living his best life. Today he looks no different than any other child at the water park.
That is a sentence I never thought I would say. And even now I say it tentatively. But I say it for the parents who are sitting in a much different place along his journey. To the who are hopeless and fearful. To those who are writing their “I’ll never be able to” lists. To the parents who feel very different from the other parents around them. For you, I say this…
It won’t always be perfect, but it won’t always be hard and painful either. There will be moments that carry you forward. Moments that give you hope. Moments that make you appreciate the hard work and tenacity it took to push forward. Remember the good moments. Revel in the fact that you are living a moment you never thought you would. A moment you proclaimed as “impossible.” Give thanks for this moment. Linger In the magic of it. Allow yourself to feel even just a little bit of hope.
And then get inside of that moment with your child. Experience all of the joy he feels. Exhale. Life your best life right beside your child. You both earned it.