The Backpack
A lot of times, when people talk about backpacks, they share bright, perky stories about Bento boxes and handwritten notes, report cards and sneakers for gym class.
I’ve never carried a Bento box. I don’t even know what one looks like.
I’ve been with the same boy for eight years now—ever since he was a plump, silent three-year old and rode the small bus to something called integrated preschool. Back then he wore diapers. I remember carrying them for him, and the sweet, powdery smell they left behind when the teacher took them out of my pouch.
During preschool I sat in a cubby and listened to the kids sing their songs. I think this is where the boy realized he could see the days of the week in color. Every Monday was blue on the chart they used for their morning meeting, and I think when he closed his eyes he would picture the bluest sky, or ripe blueberries.
I have never carried blueberries. I don’t think this boy likes them very much.
I have carried notes back and forth, back and forth. I used to carry notes that said what kind of day he had, if it was something called a thumbs down day or a thumbs up day.
On the thumbs down day, it meant he had a hard time. It meant he hit, or scratched, or screamed. He didn’t sit in his seat when he needed to, and he couldn’t keep his body still.
Quiet body Jack look in my eyes quiet body quiet body.
But on a thumbs up day, he listened to the teachers. He worked hard to drown out the noise of the garbage trucks on the street outside, and concentrate on the colors and shapes and sounds inside.
Where’s the triangle good boy Jack what color is it green or yellow listen to me now great job.
I am red. Well, mostly red. Now I have a few dark stains that don’t come out.
I have carried IEP plans, and granola bars he never ate, and small containers of applesauce.
I have brought home forms with phrases like autism spectrum and pervasive developmental disorder and occupational therapy and speech evaluation.
I have carried self-portraits he drew in art class and plastic bags with homemade play dough. CD’s full of Nicki Minaj and songs by Rhianna and, most recently, the Beatles. Books for show-and-tell and homework folders and long lists of spelling words.
Over the course of eight years, I have held his life in my pockets. I have held his diagnosis and his future and his behavior and his food.
We recommend speech three times a week for next academic school year.
Child is unable to read at grade-level.
We worked with handwriting today he got frustrated.
Ate all of his snack and threw away the wrapper himself.
I don’t carry a lunch box, because this boy buys hot lunch every day. He buys hot lunch so he can sit with the rest of his class at the table and look around and see that they are eating pasta and mandarin oranges in a cup and hotdogs with the bun and maybe decide that if they like it, he might, too.
Now he loves mandarin oranges.
I have never carried an invitation for a birthday party.
A lot of times he twists my handle with his hands, the one you’re supposed to use to hang me on the hook. He grips it tightly and twists it over and over. Twist, twist, twist. Usually he does this on the bus ride back and forth from school, when things are noisy and his stomach is full of fluttery butterflies.
Twist, twist, twist.
He started twisting my handle when he was just a little boy, with small, pudgy fingers. Now, his hands are long and he has a callous on his two middle fingers because he puts them in his mouth when he’s nervous. He bites his nails.
On the way to school he is wound up like a clock. He is all wiry nerves and tight coil springs. On the ride home, he is calmer—his hands fluid and limber.
I have felt shame in his fingers. I have known his hope, and his hesitation, and sometimes, sparks of bright, dazzling joy.
For a while he would chew on the handle. That drove his mom crazy. She said it was disgusting to chew on me like that. And, well, he tried to remember. He tried to keep her words in his head even when there are so many words floating around like snowflakes falling from a dark gray sky.
Thumbs up sit down please come back thumbs down not in your mouth Jack.
I’ve been to school, and to summer camp, and to water parks and on airplanes and in hotel rooms.
When he was nine, the boy started to memorize the roads on the way to school. Together, we’d sit in his seat and he would murmur the street names to himself.
Oakwood, Starwood, Ledge.
That year, everything inside my pouch was a bright royal blue; blue ruler and blue notebook and blue folder and a blue plastic box for his pencils. Blue made him happy.
In fifth grade I carried a single dollar bill every Thursday, wrapped carefully in a Ziplock bag, the kind you use for sandwiches. The boy packed the dollar in the bag on Tuesday nights because he was so excited for something called Snack Shop, where he could buy an ice cream after lunch.
I have been thrown to the floor in rage. I have been a reminder, a chore, part of a routine to nudge this child towards independence.
Jack put your backpack away put it away now you know where your hook is.
One year, this boy’s older brother got a new backpack; a bigger one, black with yellow trim. So the mom asked if he would like one too, but he refused. I like to think he refused because he likes me so much and we’ve been through a lot together, but it’s probably because he likes things to stay the same.
He hates change, this boy. He hates detours because of construction and two-hour delays in the wintertime. He feels better—calmer—when the bus is on time and school starts when it should and lunch is not delayed because of standardized testing.
Whew, standardized testing. Don’t even get me started on that. Let’s just say standardized testing is very, very hard for this particular boy. It is stressful and confusing and at the same time meaningless.
I have felt how much he longs to be like the rest of them, to trade Pokemon cards and chatter easily about swimming and math and lunch and teachers. To forgo constant conversation about street names, and instead high-five boys who pass the seat where he’s sitting.
But he can’t. He doesn’t know how. So instead he and I sit alone in the first seat behind the bus driver and he whispers.
Two more miles for school Oakwood Starwood Ledge one more mile.
It’s the middle of August now. Summer school and karate camp are over, and I’m hanging here on my hook in the dark closet.
Outside, the grass has yellow patches and the flowers are dry. During the day everything feels hot and still, and yet the air is nearly pregnant with change. The boy knows it. I can hear it in the way his voice rises and falls, rises and falls outside of the closet.
Who is my teacher not a para again what day is Snack Shop what time is the bus coming.
At night, there is a teasing chill to the air; the harbinger for autumn’s rich colors, and in just a few short weeks, this tall boy will sling me over his shoulders and climb the steps of the bus to sixth grade.
With each step, he is one foot further from the pudgy, diaper-wearing preschooler he once was, and another foot closer to the teenager, young adult, and man he will become.
I think if he could write a note to the world and put it in my pocket for me to carry back and forth so everyone could read it and share it and understand it, it would say something like this:
I am trying.
Kim D
August 10, 2015 @ 12:48 pm
I am crying, trying not to sob, with tears of understanding flowing down my face…as always, you write as if you are inside my head. My prayers will be with all of you that this year is as smooth as it can be and that Jack doesn’t have to try as hard, that he finds that true friend, and that one day that backpack holds that elusive birthday party invitation.
Lee
August 10, 2015 @ 12:52 pm
I look forward to your posts every Monday. Our sons are so similar and the familiarity in your stories provides me with comfort. For that, I thank you.
leighbug
August 10, 2015 @ 1:02 pm
Great story, I loved it. Check out my blog and maybe leave feedback? 🙂
Scott Wilcox
August 10, 2015 @ 1:30 pm
Again I thank you Carrie. Tears and sometimes sobs often accompany your weekly entries. Heather’s Angelman Syndrome is different, but on many ways the same. God bless us all.
Jennifer
August 10, 2015 @ 2:53 pm
Beautiful! Our boys are the same age and I can identify with so much of what you’ve shared here. Thank you.
Vivien Lobell
August 10, 2015 @ 3:23 pm
Every Monday I avidly read your postings and often share them with my colleagues. Todays post made me consider what I could possibly do differently for the beginning of the school year to make the transition easier not just for the autistic students on my case load but also for the parents, in particular dedicated moms. Any advice would be welcome After decades of practice as an occupational therapist with special needs students I am grateful for your insights and anecdotes. I (and many professionals on the team I work with) often wonder and marvel at how parents cope. So. We are open to your suggestions! Thank you for sharing your helpful blog! Wishing you a successful and productive academic year for all your beautiful children. Sincerely , Vivien Lobell
Sent from my iPhone
Lisa
August 10, 2015 @ 4:27 pm
I, too, look forward to your post every Monday. My grandson just turned four last week and I’m still trying to accept his diagnosis. Your blog and your books are invaluable to me. I can’t imagine being glad for his autism someday but I’ve heard you get there. Right now I’m stuck in the “looking for a cure” phase. I just want the best for him and his being typical seems like an easier life. Thanks for sharing your family, and especially Jack, with us.
Allison
August 10, 2015 @ 9:36 pm
Thank you. I enjoy your posts every week. Once I think I wrote a comment saying I live in LA now, but am from NH and return every summer to be with family. My son is autistic too, high functioning. The birthday invitations and friends are few and far between – I feel your pain (is it pain? I don’t mean to assume!). I worry about the coming tween and teen years, about depression (just learned a few months ago that this is a very real possibility) and really understanding how different he is. Although some of the differences are lessening as he grows, and others are becoming clearer and coming in to sharp and painful focus, at least for me. You are a brilliant writer and I thank you for many things.
NickyB.
August 10, 2015 @ 10:52 pm
I am crying now. So familiar, so true, so real, and beautiful!
Tammy
August 11, 2015 @ 12:50 am
I love reading your posts because I see a kinship. Today that kinship is sad….being the backpack, seeing the change is hard. Seeing the frustration, the change, the mumbles of words that feel good in your mouth, the look of panic that only a Mom can see on that face.
Dana
August 11, 2015 @ 10:18 am
Every time I read your blog, I picture my own son Triston. He has autism too andvis so similar to Jack.
MeanderingDude
August 11, 2015 @ 1:43 pm
Your story, well when you get in an elevator and it drops suddenly. That is what my stomach did. It was wonderful, I never tire of your style. Thank you.
Barb
August 12, 2015 @ 2:43 pm
Carrie, Thank you for sharing every Monday. I do not have a child with autism but I teach middle school and have had many in my classes. I read your blog to keep having new insight. My daughter is in medical school, and I was so excited for her when she told me last spring after a rotation that she thought she found he specialty…behavioral and developmental disabilities. She loved working with children and teens with autism, CP as well as other disabilities. I sent her the link to your blog. I know she will be fabulous at this as she has always had a passion for others with disabilities. Jack sounds like a fabulous young man and I wish you and your family all the amazing memories that family bring.
Scott Wilcox
August 13, 2015 @ 6:06 am
Barb,
Please thank your daughter from us, for her decision.
And thank you, too, for giving her the basis of compassion to go into medicine, and this specialty.
Pat Gauvresu
August 15, 2015 @ 4:33 pm
I presume you’ve heard of a Temple Grandin. The most famous autistic person on the planet. She’s been a blessing for cattle and the human race. Gives lectures and is making an enormous impact in this world on many levels.
Deb
August 16, 2015 @ 12:37 pm
You understand your son. So much of how he feels is how we all feel at times, his is more a matter of intensity. I’m not so different from your son, I suffer from intensity as well. It has it’s pluses and it’s minuses, as does everything. He’s lucky to have you as his mom. I’m sure it’s not easy raising him.
Why I Ride the Short Bus | The Dish
March 6, 2017 @ 1:47 pm
[…] Rose feel bad for me, but it is for me okay. I like it. I sit there in the quiet and I hold my red backpack on my lap and I twist the strap. It makes me feel good and peaceful, like a balloon that is letting […]