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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You are so courageous, Caroline. I’ve got my blue on today, too.
Thank you, my dear Mary! Way to rock the blue. 🙂
So beautiful, my dear! It was lovely to see you last week.
🙂 Indeed it was. Thank you for being YOU. xoxoxo
Caroline, amazing. Keep on being who you are.
Autism Awareness Day—
For me it meant:
Hello!!! We Exist! We are not aliens!
Hello!!! Look at our caregivers and loved ones! They go for broke to care for us and they take us for who we are!!! …So pléáse do give them the slack, the space they need so bad….
What a great comment, Erik! Thank you for sharing what Autism Awareness Day means to you.
[…] blessing. And whenever Willie prays, I think of how beautiful it is to be led by him. I am hoping against hope that we will continue to ‘unlock the mystery’ of autism, that we will continue to […]
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Thank you Caroline for your honesty. As I read your blog I had tears in my eyes, knowing all too well the paradox of wanting to “fix” my child yet loving him unconditionally. Thank you for your openness.
Ann, thank you for that beautiful affirmation! I’m so glad the post spoke out to you.
Thank you for all that you do to increase awareness. I have read several of your posts and feel your burning desire to unlock the causes of autism. I stumbled upon this article earlier today and as you have mentioned diet (a possible contributor), I thought of you when I saw this:
Blessing to you always,
Thank you very much, Patricia! I appreciate that, and am heading over to read the article right now!
[…] some reason, I started thinking about my brother Willie, and how, on top of everything else, he’s dealing with recurrent cold sores (which result […]
Thank you for your kind insight! I’ve spent so many years feeling like a failure, and I realize that FEELING like a failure doesn’t mean I AM a failure. I’m still trying to wrap my head around how to translate that into my life-how to feel better about my efforts. I guess it comes down to endorsing myself for my efforts and not for the outcomes (we really don’t have control over most of the outcomes). I hurt for my son-for his anxiety that builds until he melts down, and for the despair he feels after losing control. I believe he is an angel sent from God to teach me patience, forgiveness and love (a destroying angel at times, but an angel nonetheless!) And from the depths of my soul I know that someday in the life after this very difficult and instructive life we all are living, I will know him as a person whose mind and body are whole. I look for glimpses of that person- the one who is trapped inside the disability we call autism. Thank you for your gift of bringing sight . . . and tears to my eyes.
Cindy, thank you for sharing this! I share your faith in a future of wholeness, and I will hold you and your son in prayer.