What Autism Has Taught Me
One day a young Buddhist on his journey home, came to the banks of a wide river. Staring hopelessly at the great obstacle in front of him, he pondered for hours on just how to cross such a wide barrier. Just as he was about to give up his pursuit to continue his journey, he saw a great teacher on the other side of the river. The young Buddhist yells over to the teacher, “Oh wise one, can you tell me how to get to the other side of this river?”
The teacher ponders for a moment looks up and down the river and yells back, “My son, you are on the other side.”
A couple of years after my boy was diagnosed, I wrote a post in which I claimed that I hated autism. My reasons at the time were sound: I believed that my relationship with my son was broken because I would never understand his world. And as a result, I would never understand my boy.
And that knowledge broke my heart over and over again.
In between the emotional cyclone of inconceivable joy and inconsolable tears that might happen at exactly the same time, in between the excitement over a single word spoken clearly and the fear of the absence of the other thousands he would need to fit in, sometimes it would break me.
And I would mourn what might have been.[sws_pullquote_left]In all likelihood, you know someone on the spectrum who is just waiting for you to enter his or her world. [/sws_pullquote_left] But you see, that’s the beauty of raising a child: there’s rarely time to mourn for long.
There are games to play, trampolines to bounce on, cuts to kiss, hugs to give; in other words, life to live. And when all of that is enhanced by the cyclone that is sometimes autism, time does tend to race.
So I raced along with it.
And while we raced together, I realized something: I don’t hate autism. Like all the best teachers whom you can’t stand while they’re teaching you, I hated autism. But later, sometimes you realize how much they’ve helped you.
That’s where I am with autism today. I’ve found myself on the other side of the river.
Alongside all our struggles to help the boy grow and develop, he’s helping me do the same. Here are a few things I’ve learned from my boy and autism:
1. I’ve learned to shut up and listen.
2. I’ve learned that colors work best in the right order.
3. I’ve learned that when something makes you laugh, you should watch it repeatedly.
4. I’ve learned that bouncing like Tigger is the best thing in the world.
5. I’ve learned that being carried is OK when you’re tired.
6. I’ve learned that making faces is sometimes the best way to communicate.
7. I’ve learned that floating on your back looking at the clouds as they roll by is the absolute best way to spend a day.
8. I’ve learned to laugh when you’re laughing, cry when you’re crying, sleep when you’re tired, eat when you’re hungry, and play when you’re awake.
9. I’ve learned that when you don’t feel the need to fill every quiet moment with words that people really listen when you do speak.
10. I’ve learned, as The Buddha did before us, there is no side, there is no river, there is no box that everyone should fit in.
Once I saw things for what they were, my boy and I connected. I found my son.
Which isn’t that always the way with every kid, even those who aren’t on the spectrum? If we want to connect with our children, we have to enter their world. My boy’s world may be harder for me to enter (I do, after all, have words to thank for my positions), but that doesn’t mean it’s impossible.
And for autism’s ability to teach me that, I am forever grateful.
What You Can Do
Since my boy was diagnosed the incident rate for autism has risen from 1 in every 151 to 1 in every 68 children. In all likelihood, you know someone on the spectrum who is just waiting for you to enter his or her world. The Autism Resource Foundation is a great place to start when looking for information about resources but also events, community awareness, leadership, advocacy, and financial assistance.
Once we get outside of ourselves and our own fears and begin the journey to connecting with others, the things we saw as barriers begin to blow away.
Not even the wind moves tonight as I slide the boy into bed.
For the world comes unglued in the stillness,
falling away from me, into night.
And I reach for it
to secure it
draw it into me.
But instead I take his hand
growing into mine.
So I am grounded into now.
Till the wind blows over the moon.
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Dad, hubby and irritator of students and school boards alike, Russell Winn is committed to ensuring that the Huntsville City Schools provide access to the educational support system for every student. When he's not enforcing grammar rules or arguing the ethical minutia of Kant's deontology, he spends his time loving his kids, reading anything by Stephen King or Christopher Moore, and attempting to speak truth to power on behalf of special needs kids. You may follow his rants at www.geekpalaver.com or on twitter at @russwinn.
Outstanding!!! I have 2 young cousins that are both Autistic, and we have just recently found out that our son might be on the spectrum. I found your experience to be inspiring and helpful. Everyday is different and challenging but i think it makes us love him that much more.
Thanks, Tiffany. I’d be lying if I said that we don’t have impossible days sometimes. (Honestly, when I was struggling to carry the boy upstairs just to redirect him during a meltdown on Saturday, I was thinking that I might need to revise my post a bit.) We still have no idea what upsets him sometimes, and that is extremely difficult to handle.
But, as they say, it gets better.
And I find it extremely important to remind myself of that.
I wish you well on the journey. If you’re in the Rocket City, there are an amazing number of support organizations for autism here. Two of the best are Making Connections and the Autism Resource Foundation.
They are run by families with children on the spectrum, and they are amazing people.
Gorgeous article. I have to be reminded sometimes that “there is no box”, and to think much, much bigger than that, especially during the ADD struggle. It’s great advice for every parent, and every human being.
Yep. I have to remind myself of this everyday with my daughter (especially as she approaches her tweener years).
We have 3 daughters under 5 who all have autism. When our oldest was diagnosed, we felt very much like you first described. Our view is so much different today! Our daughters are amazing as they are 🙂
The best part of my week is getting to go into my boy’s classroom and interact with the other kids there. I don’t know any group of kids who work and play harder.
Thanks for reading and letting me know I’m not a weirdo! 🙂
Thank you Russell. How blessed you are. And a blessing to all you touch.
Thank you so much for taking the time to read and comment on this. It means the world to me. Your embodiment of compassion towards even those who are abusive towards you taught me long ago that love really is the most excellent way. 🙂
Miss you and I hope you’re well.
I consider you a SuperDad, Russell. I’ve watched you enter Matthew’s world so many times, and it never fails to leave me in awe at your compassion, patience and understanding. You are a wonderful advocate and parent!
Nah, I’m just a guy with super kiddos. 🙂
This was a joy to read. My son is not autistic but has cerebral palsy and sensory processing disorder. I loved the list and as I read each one I was reminded of the new way that I see the world as well. Thank you for reminding me.
Thank you Mary Ellen. I was truly worried that this wouldn’t ring true with others who’s kids might not fit into some preconceived box. I’m really glad to know that my concern was baseless.
I loved this! My granddaughter has Asperger’s, Trichotillomania, and ADHD. Most people don’t know it now because she has truly progressed since we enrolled her in private school (with the exception of the Trich). The children don’t make fun of her because she doesn’t have brows of lashes. She actually has a few friends now. To hear her laugh brings joy to my heart. She still takes most things literally and we may have to tell her when we’re joking but she’s even trying to make jokes! No matter the child’s condition, embrace with love, patience, and “try” to understand. The love we get back is priceless.
True. Quite true, Cynthia. Thanks for sharing. Nothing makes us as happy as watching the boy interact with other kids.
Russell, This was awesome! It brought tears to my eyes. If I had to describe you I would say you are a passionate person, but seeing this article put me at a loss for words (and we know that’s hard to do) because I felt the word passion is not good enough to describe someone like you. Watching you parent “The Boy” has impacted my life in more ways than you will ever know. I have been blessed by you professionally and I am just thankful that God saw fit for our circles to continue to “bump” into each other so that I may be blessed by watching your parenting and stance for equality in education. You Rock!! (I learned that from you, haha)
Thanks, Kay. You’re far, far too kind to me.
So well written, Russell. Yes, you are a bit of a weirdo the way English major types are weirdos ;-), but that just makes you more perceptive of what makes both of your kids work! You don’t miss a thing. Somewhere along this long & winding road with my son, I learned to get past the acknowledgement stage and on to the acceptance of Evan for exactly who he is – and he is so delightful! You’re right about the difficult days, too. We don’t have those often anymore, but they are still baffling when they happen. Sometimes I still hurt, too, just as I do when my older daughter is in pain. I believe that’s called parenthood. Thank you for the truth — our joys may be for reasons other than a home run hit or some other usual childhood feat, but we can still almost burst with joy if we allow ourselves to share the no-box with our “different” children .
Dang it Marikay, you just wrote my entire post using about a 1/10 of the words.
Yep, I’m a complete weirdo. 🙂