This past week, I experienced a new kind of homecoming. My family had the joy of being together, but we also had the sorrow of my brother Willie’s outbursts. For the first time in a long time, he had multiple instances of out-of-control aggression in the span of a week.
As such, World Autism Awareness Day is tinged with pain for me. It’s the grief of watching my parents incur injuries as they try to protect their son from self-harm. It’s the powerlessness of wanting to help and not knowing how.
Most of all, it’s the sound of Willie’s weeping after an aggressive episode (which I’ve come to think of as a ‘rage blackout’ because he seems to lose rational consciousness for a time). He always, always, always feels remorse afterward. And I can never, never, never stay angry at him when he cries. If you heard his weeping, you’d know what I mean — it’s a sound of total grief, a sound you wouldn’t wish on your worst enemy.
Yes, we’re searching for new treatments, doctors, and protocols to help Willie. But we’re also left with the reality of uncertainty. We don’t know what triggers these rages, so we don’t know when (or if) they will stop.
And — full disclosure here — this not-knowing makes us feel like failures.
My parents and I, like many families, face a tremendous paradox: we do everything we can to help Willie overcome his behavioral challenges, and, simultaneously, we accept him as he is.
At times, living this paradox is painful, and all we can do is cry out for help. All we can do is pray — the kind of prayer that consists more of heartache than words.
First and foremost, I think, today has to be about honesty. If we are to raise awareness, we have to start by telling our true stories. We have to begin by being in relationship — and telling the truth about our fears, failures, and hopes. (As such, I have to say that today, I’ve gone through eight Kleenex just trying to write this post.)
But World Autism Awareness Day is about more than just my story. It’s about solidarity. It’s about knowing that my family is not alone in facing the great mystery of autism.
It’s about loving someone different, and knowing that, at the end of the day, our love is bigger than our questions.
I treasure this line from Tolstoy’s Anna Karenina: “… if it is true that there are as many minds as there are heads, then there are as many kinds of love as there are hearts.” I hold it close to me, because even a small thing can be a lifeline in times of trouble, a flame that illumines the darkness.
I know that there is love in Willie’s heart. I know that he has unique and amazing gifts. I also know that those things can be obscured by his challenges and difficulties — but isn’t that true for all of us? Don’t we all struggle against our own demons, and hope against hope that we will be loved even in our imperfections?
And so today, I am choosing to Light It Up Blue for Autism Awareness. I am going to put on my one and only blue dress and walk out into the world. If anyone mentions the dress to me, I will tell them why I’m wearing it: for my only brother, who has autism.
For Willie, who I love.
What does World Autism Awareness Day meant to you? Tell me in the comments!
If this post spoke to you, please share it with those you love.
Recommended Reading: This week, I’m proud to share that With No Warning, The Window was selected as the winner of AbledLinks’ inspiring stories contest! The entry is based on an early AWCC post, so be sure to check it out if you’re a new reader! Likewise, The Secret to Knowing When You’ve Done Enough is currently featured at Know Me First. Thank you to both sites for sharing the stories!
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