My Lonely Boy
“Mom, why I am. A lonely boy.”
It was a typical late-afternoon in our house; homework was finished, Jack was upstairs listening to his music on the karaoke machine, and the other four kids were outside playing tag with the little boys next door. I was trying figure out if I should make dinner or convince Joe to take us out to our favorite Mexican restaurant.
But then Jacked interrupted my deliberations of burritos or pork chops with his bombshell. With a single question, he took my breath away.
“What, Jack? What do you mean?”
“Nothing.” He turned and stomped away.
I mean, we knew this was coming, right? If I had to be honest, I’d have to admit this was always my ultimate concern—not that he wouldn’t speak in sentences or become potty trained or learn to put his snow pants on by himself, but that he would never fit in.
I feared the aching loneliness that accompanies spectrum disorder the most.
He’s terrible when it comes to playing with other kids. He is so stinking bossy. He never wants to be “it” in tag or hide-and-go-seek and he screams if things don’t go his way. A lot of times, he quits in the middle of the game and wanders off on his own, leaving the team short a player.
It’s like watching a finely tuned orchestra, where everyone is playing and singing in harmony. But there is one musician who is a little different. He wears a turtleneck instead of a dress shirt, and in the middle of the performance, he stands and shouts that Bing Crosby died on October 14, 1977 and it was a Friday.
You can’t help but cringe, seeing that person, because he is so completely out of sync with the others.
But this musician, he knows the mechanics of music. He knows how to hold his instrument and push the keys and read the notes. It’s the subtle nuances of the symphony that he misses; the crescendos and the chords and the quick change in tempo. He doesn’t understand the joy of playing together.
My son is lonely.
I went to a conference a few years ago, and the speaker—an accomplished psychologist—told the audience that, for people with autism spectrum disorder, social situations are like walking on icy pavement using only stilts.
“First, we need to dry up the pavement,” she advised. “And then we need to teach stilt-walking.”
This didn’t make sense to me. It still doesn’t.
Does the ice represent fear? So we need to dry it up and take it away? Are the stilts like the rules of a game, and Jack has to try to learn to balance?
Every time I think about it, my head hurts.
“Jack, come back here! I want to talk to you!”
He turned around and started counting to ten. This is his charming new habit when you try to talk to him about something and he’s lost interest. It isn’t annoying at all.
“Jack, what do you mean—“
“One, two, three, four—“
“Jack, I am trying to talk—“
“Five, SIX—“
“JACK!”
At home, it’s different. We kind of get him. We are all—even 5-year old Henry—are starting to see that behind the rudeness is fear, and beneath the counting is a boy who is stalling so he can search for the right, most relevant words.
I mean, I wish you could see my two oldest boys in the morning before school. If it isn’t Waffle Day Thursday or Pancake Day Friday, then Jack insists he wants a “Joey omelet. For me Joey will cook.”
After the three younger kids get on the bus, Jack sits at the counter while his 11-year old brother fries him an egg. And they talk.
“Joey. Joey. Not very wet. Don’t have the egg wet.”
“Jack, I know. I know how you like it.”
“Joey. What was it you liked the most, in fifth grade.”
Joey doesn’t rush his younger brother. He doesn’t correct his unusual speech pattern or prompt him to make eye contact. He waits for him. And sitting at the kitchen counter while Joey cooks for him, Jack is finally in tune with another person’s rhythm.
For that half hour, he is not lonely.
But then he climbs on the crowded bus and heads off to school. His day is full of conversation and chatter, changing in the locker room and lunch in the noisy cafeteria. All day long, he is working so hard to balance the sounds around him with autism’s inner metronome.
By the time dinner rolls around, his social capital is all used up, and as soon as he finishes his last bite of ice cream, he disappears into the recesses of the house to listen to music and build long, strange playlists.
At first this was painful for Joe and I. We’d call him back down the family room to watch TV with the rest of the kids or demand he turn his music off and talk to us. But over time, we’ve come to respect his need for distance. He is simply finished for the day; this musician cannot play one more note.
The next evening, after the homework was done and the snacks were eaten, the other four kids started to put on their snow gear and head outside. I saw Jack start to slink upstairs with a CD in his hand.
“No, Jack. Tonight you are going outside for a while.”
“No! I can’t play!” he screeched.
“Yes, you can. Just for a few minutes.”
“One, two, three, four—“
“JACK!”
He trudged back down and reached for his jacket. But after a few minutes outside, he rushed back into the house.
“Jack! You need to stay out longer—“
“I need. My BOOTS. The driveway is with ice.”
“Okay buddy, but be—“
“Joey. He said. I have to be it. It is my turn to be it.”
I watched him shove his feet into his black snow boots, and once again I thought about my lonely musician; marching, marching, marching to his own beat.
I don’t know how to repair the small tear in his heart before it turns into a large, gaping hole. I don’t know how to make sure my lonely boy doesn’t turn into a lonely teenager and eventually, a lonely man.
But I think might be getting closer to the stilts thing.
If the ice is too slippery, then you should wear boots.
And if you don’t understand how to balance on stilts or play tag or make the perfect egg, just ask your big brother. He’ll help you walk high and tall and straight on the pavement. He’ll teach you the rules of the game and keep you moving in time to the music.
With him nearby, you’ll never be lonely.
vickiecouturier
January 12, 2015 @ 4:42 pm
thanks for sharing this,,as i have mentioned we have just got a diagonsis for my 4 yr old grandson ,,they are trying him on some medications to see if it will help with some of the behaviors,,,he actually took one of his Christmas toys apart and ate the lithium battery! he didnt swallow it but it was scarey,, i know he is lonely too,,he just doesnt play with with others,,he gets either too rough or quits,,its sad to see him without any friends,,my daughter just got custody of him and his sister a yr ago,,so we are still finding things out,,not good things that this kid had to go thru before he state stepped in,,,
learntolovefood
January 12, 2015 @ 9:43 pm
What a beautiful essay! It is a really lovely moment of peace when Joey is frying Jack his egg!
Lisa
January 13, 2015 @ 5:55 am
I love your writing! When you said ice and stilts it made me think that the icy pavement represents the difficulties we face in life. We have to move forward anyway even though it’s difficult, scary and if we don’t move correctly, we might get hurt. The stilts represent, to me, our manner of movement, the only way we know. In Jacky’s case, it isn’t the best way to move on ice, he stumbles more, doesn’t work as efficiently and is scary.
We can all dry the ice by understanding that it is a scary, difficult obstacle for some and learn how to manage stilts so we can help with balance. We can all help in some way to melt some of that ice. Your family seems to be doing an amazing job with that!
Lisa
January 13, 2015 @ 5:58 am
Jack, not Jacky. (i have to remember to always proofread)
jenmarie33
January 13, 2015 @ 7:24 pm
Your boys are so cute!
Kaeley
January 26, 2015 @ 1:17 pm
Love the way Joey looks at Jack in the second picture….melts my heart!
wifeysinger
July 9, 2015 @ 10:06 pm
carrie, thank you for sharing this. i found your blog tonight and can’t stop reading. your jack reminds me of my elijah (6).
anyway.
i wept through this post, i love my lonely boy. ❤
wifeysinger
July 9, 2015 @ 10:08 pm
carrie, thank you for sharing this! your jack reminds me of my elijah (6). i wept through this post, i love my lonely boy. ❤
found your blog tonight and can’t stop reading!
xo hannah
Patti Smith
January 7, 2016 @ 12:15 pm
Tell me..what happens to children who are diagnosed with autism when they become adults? What did we used to call and do with these poor souls before the diagnosis of autism was made?