You, Me, and a Boy
My name is Carrie.
I live in New Hampshire. My husband Joe and I have five kids. I never thought I’d have that many kids, but that’s another story for another day.
My second son Jack is diagnosed with autism. I never thought I’d have a son with autism, but that, too, is another story for another day.
However, there is no denying it. He has autism, and he will have it for the rest of his life because—as far as I can tell—there is no cure.
This is not bad, or wrong, or unacceptable. It simply is.
His autism makes other people uncomfortable. Again, this is a fact. I have seen it myself my very own eyeballs. It is not bad or wrong or unacceptable. It simply is.
His is too loud, and other times he is too quiet.
His body does not follow conventional rules of motion.
His brain does not adhere to traditional thinking.
Plus, he swears a lot. We’re working on it.
He has crippling anxiety, and some days it’s all he can do to put one foot in front of the other.
Have you ever been so afraid of the wind that you could barely leave the house?
Have you ever had to jump and hop around a room in order to regulate your body?
Have you ever taken a really long time to answer someone’s question because you needed to sort through all the words in your brain before you could find the right ones?
My son makes people uncomfortable.
That is okay. I mean, it makes me a little sad but for the most part, it’s okay. After all, it’s not about who I thought I’d have, but who I do have.
I mean, I thought I’d have a boy who ran the bases as fast he could and collected a few trophies here and there and maybe made the honor roll at school. I thought I’d be that annoying mother on the sidelines cheering so loudly people turned to look at us.
Instead, I am an autism advocate.
The first time I thought of myself as an advocate was when Jack was about eight months old. I was sitting in the pediatrician’s office with him in my lap, trying to describe to the young doctor how he couldn’t seem to manage solid food.
It’s hard to explain. It’s like he can’t move it to the back of his mouth and swallow it. My older son never had a problem.
Well, kids do learn these things at different rates.
No, I know. But something just doesn’t feel right.
By the end of the appointment, she had written me a referral for early intervention.
The thing is, the word advocate never even popped into my head. Instead, as I fastened Jack back into his car seat and drove home, I thought about how I was the only one who could speak on his behalf—who could be his voice amidst all the eerie silence.
Thirteen years later, I am still giving voice to a child who is often voiceless. Oh, sure, he has a voice and all, but he usually uses it to talk about Oreos or tell the same knock-knock joke a bazillion times.
This advocacy thing, I guess you could say it’s a little like building a house.
First, I remind myself that people are mostly good. This is my foundation. People are good and they have good intentions. From here, I build.
As Jack’s mother mother I have to feed him and love him and teach him and understand him. I have to make sure he knows how to cook an egg and look for cars before he crosses the street.
As an advocate, I have to show you how I feed him and love him and teach him and understand him. I have to tell how he cooks, but I still don’t trust him in the parking lot.
Basically, I have to bring my 5-foot, 8-inch boy to life in front of your eyes, even if he is standing—or stimming—right next to me. I have to tell the story behind the child, and describe the rich, colorful landscape beyond the stark diagnosis.
Once I’m done with that, I have to open my heart right up to you.
I have to let you know I never expected to have a boy like this but I do, and I Iove him so much can you see how I love him help me help him help me make room for him.
This second part is a place without armor—a space of the deepest vulnerability.
Then, after all that, I have to understand you. I have to cast all of my assumptions to the side like an old shirt, and try to figure out where you come from, how you think, and who you are.
Usually, I only have about four minutes to do this advocating. I might be standing in line at the bank, or sitting in a metal chair at a school band concert, or buying apples in the grocery store.
I have to connect with you quickly, and honestly. I have to be as transparent as possible. I have to be fearless, and sure. Believe it or not, this is the easy part of advocacy.
I know, crazy, right? What’s easy about baring my heart to strangers and explaining why my Jack-a-boo jumps around like there are ants crawling all over his body and why he takes so long to answer a simple question?
The hard part is the anger—anger at people who stare, or bring up ideas I’ve heard a million times about gluten-free diets, or suggest with a wink that maybe we’d all be a little better off if we just disciplined this kid for a change.
Believe me, I know anger. Anger is easy. I love sitting inside the adrenaline rush. It’s soothing, and satisfying.
People have built entire platforms based around anger. They have collected followers by the thousands by inciting rage and posturing an us against them philosophy.
The way I see it, there is no us and them in autism awareness. There is simply you, me, and a boy.
Believe me, this wasn’t easy. There were plenty of times I wanted to scream at people to stop staring, to be grateful it was me and not them dealing with a boy in the throes of a meltdown, or listening to colorful swear words because he stubbed his toe.
Now, after thirteen years, I have learned to recognize these moments as an opportunity to him explain him, and I have a sort of formula when it comes to raising awareness. Basically, I ask myself three questions.
Have I spoken my truth?
Have I changed someone’s mind?
Have I given another person a positive interaction with autism?
If I can answer yes to these three questions, I know I have advocated for my son’s rightful place in this world.
See, now I know. Advocacy does not sneer, or stomp, or rage. It is the quiet story, the simple smile, the outstretched hand. It is a soft whisper—an invitation.
Come with me.
Will you come with me?
Will you walk beside me as I fumble my way down this uncertain path?
You don’t have to stay forever, I promise. Just long enough to see his sweet face as he flips the egg in the pan, or to hear the cool wind of a New Hampshire morning whistle through the trees.
Will you come with me, and feel firsthand the fatigue of sleepless nights, and a baby who could not swallow?
Will you be curious, for just a moment?
Will you ask questions and wait for the answers and know his fear as if it was your own?
After we walk for a while, will you sit with me in the tall, cool grass and admire the house in front of us?
Together, we are here. We are building our house.
He makes really good eggs. Fluffy, with lots of butter.
You are good.
I want you to know I’m still cheering for him. I’m simply standing on a different sideline.
April 9, 2018 @ 6:39 pm
A house builder? I never thought about it that way, but it sure fits. I’m thousands of miles away from your family, and we have a different diagnosis, yet we are working on the same house. Hand me that nail over there, will you please Carrie? Jack and I trust you with the hammer.
April 9, 2018 @ 7:29 pm
I am coming with you as I read your blog. Perhaps, one day I will actually meet you and Jack. I feel like I know you both and care for you deeply.
God bless you all.
He is a handsome boy and has a beautiful smile.