Time is Running Out
Next week is my son Jack’s birthday. He will be eleven.
He stands almost at my nose now, and when we bought new sneakers last week, he picked a bright blue pair of Nikes—from the men’s department.
Double digits plus one.
Five years until he’s eligible for a driver’s license, and six until junior prom.
Seven years until high school graduation.
Ten more years until he can drink, and vote, and live in a college dorm or an apartment.
When I think of him turning eleven, there’s a tight, quiet panic in my chest. I feel like time is running out.
For so long I wanted a crystal ball so I could see into Jack’s future; when he was a pudgy 3-year old, I longed to know what he’d be like in kindergarten.
When he was in second grade, I worried about fourth grade.
And now that he’s in middle school, I still wonder about high school, about graduation, about his life as a man.
But at the same time, I want to turn the clock backwards, to nudge the minute and hour hands with my finger until it’s 2004, 2005, 2006 again. I want to do it over.
Although, to be honest, I can’t really say we would have done anything differently.
We had him evaluated for a speech delay and motor issues when he was just a year old—a baby, really. He was diagnosed with PDD-NOS, later changed to autism spectrum disorder, when he was barely a toddler.
Right away, we started speech therapy and occupational therapy and look in my eye therapy and point to the bird therapy.
(I’m just kidding about look in my eye therapy. This isn’t a real therapy. It means we told him to look in our eyes all the livelong day.)
(Point to the bird therapy is a real therapy. It was when every single time a dog/cat/truck/airplane/person went by, we would ask Jack to point to it. Look it up if you don’t believe me.)
(Don’t look it up.)
We did the hard things. We put him back in his chair seventeen-thousand five hundred times so he would know how to sit through dinner and use his napkin and eat with a fork.
We insisted he wear a shirt even though he was in his no-shirt phase.
We chased him through the mall so he would learn to hold our hands.
We played a game that we named after those brightly colored plastic bricks to show him how to climb steps one leg at a time: one Lego, two Lego, three Lego.
We taught him how to stay seated until the bus stopped, and we helped him figure out how to tie sneakers with laces so he wouldn’t be the only boy in class still wearing Velcro.
We showed him how to pray.
And still, I feel like there is an hourglass bolted down on our kitchen counter, and we only have so long until the sand filters to the bottom.
Was it enough? Is it enough? Will it be enough?
A decade plus a year.
Jack has so many plans for his own future. He wants to drive a Sequoia like his father and work in a fast food restaurant because, according to Jack, fast food is just about the best invention ever. “It is food. And it is fast.”
He wants to go to college that has a water slide.
He wants to get married.
He wants five kids.
He is complicated.
Here’s an example that I think perfectly captures my tender son.
Once a week, each class at school gets to buy a treat from something called Snack Shop during lunchtime. Jack’s class gets to do it on Thursday. Around 5:00 every Tuesday afternoon he starts counting his money over and over again.
“I need. A dollar. For if to buy the Orange Blossom.”
He counts it and then he packs it in his bag, then he unpacks it and re-counts it and packs it again.
“The Crazy Cone. It is seventy-five cents. It is so good to taste.”
Snack Shop is the highlight of fifth grade for Jack, and he looks forward to it so much that it makes my heart pull and ache and hurt in a thousand directions.
It is one more reminder of his naivete—his youngness, and watching him fold and re-fold his dollar bills, the things we need to prepare him for in the next ten years pile up in my mind like thick, wet snowflakes.
How will we keep him safe from Internet scams and sexual predators and drug dealers?
How will he learn about politics? How will he vote for a candidate or understand traffic detours or navigate the subtleties of romance?
And algebra?
I mean, really. Algebra? I can barely understand algebra, and my brain isn’t exactly cluttered with Orange Blossoms.
It’s not that he’s dumb. Certainly, emphatically not. It’s just that—how can I explain it? His mysterious mind locates a single topic or subject or movie like a runaway train on a track, and once he finds it, we are powerless to change the direction.
How will we ever make room for x-(y+345)= x- 2Y?
(This may not be an actual example of algebra.)
Although getting Jack and his brain-train through his day can feel like a Herculean job requiring a boundless supply of patience and fortitude and love, it really takes so little to make him happy.
Taylor Swift on the radio during a long car ride.
A family bowling trip, or when we all go to the movies to see the latest Disney movie.
An afternoon without homework, and the Orange Blossom from the Snack Shop.
A few weeks ago, the whole class lost Snack Shop because they left too many wrappers on the floor. Jack was beside himself. Then they all lost it again the following week for throwing food.
“I did not. Throw this food. Why is it. No Snack Shack? For me?” he asked wistfully about nine-thousand times.
I think I always longed for a crystal ball so I could stay one step ahead of him. But the truth is, there are some things for which I will never be prepared, and having to explain to my almost 11-year old wearing size nine men’s sneakers why he can’t buy ice cream at lunch because some kids threw their food is one of them.
Time is running out.
But I have not given up hope. I mean, from the moment this boy made his way into our world ten plus one years ago, I have hoped.
I hope he stops crying.
I hope he starts talking.
I hope he sleeps through the night.
I hope he points to the bird.
Now—eleven years later—I remain deliriously, ruthlessly hopeful.
I hope he doesn’t have to write another haiku for homework.
I hope he’ll eat this baked ziti.
I hope he sleeps through the night tonight.
I hope they get Snack Shop back.
I guess what I really want is not so much to look back or into the future, but to hold time perfectly still in my hand.
If time stood still, I could forget how many mistakes I have made with this boy. Because, oh, the mistakes I have made.
I snapped at him to put away the dang dollar before he lost it and I let him skip the poem assignment because I didn’t have the energy to fight about it anymore. I did not know how to explain that sometimes, an entire group of people are punished because they can’t figure out who threw the sticky wrapper on the floor.
If time stood still for a while, I would be able to help him understand the difference between Republicans and Democrats, how a credit card works, and why you try to hold the door open for people at the mall.
I could smooth his soft brown hair when he’s crying on his bed, and suggest a trip to Dairy Queen after dinner for his favorite cherry-dipped vanilla cone since he didn’t get the Orange Blossom at lunch.
I could keep him from being lonely, or sad, or lost.
I could keep him safe.
If time stands still, I can’t look forward or backward. I can only look at Jack. I can only see how possible he is.
But time stops for no thing—not even autism.
So in the meantime, as the clock ticks, I will try to remember that Jack’s progress has never been a linear equation, but rather a complicated algorithm of puddle-jumping and regression, untied shoelaces and forks thrown to the floor.
It is like algebra.
He has always done things on his own timetable; walking and talking and pointing at the bird, and his hourglass—like his future—is unlike anyone else’s in the entire world.
Maybe he won’t drive until he’s twenty instead of sixteen.
Maybe he’ll start to like teams sports in high school, maybe he’ll go to college a little later.
And maybe, when he’s ninety, he’ll finally use a fork to eat his meatball.
Like Jack himself, it is all possible.
In the meantime, we will return to the basics. We will continue do all the hard things that made our Jack-a-boo who he is today; a boy who will hold my hand in the parking lot and bend his head to pray in church, an eleven-year old with bright blue sneakers and a dollar folded neatly in his backpack.
Together, we will take one colorful step at a time. One Lego, two Lego, three Lego, four.
Lyle's Autism Diet
April 27, 2015 @ 2:59 pm
God, so much of what you say here is what goes through my head every day. At some point soon I have to make financial and legal arrangements for my son. But when I try to think about how he will live after his dad and I are gone, it makes me so depressed I can’t even talk to my husband about it let alone make an appointment.
Best wishes….
Amy Richardson
April 27, 2015 @ 4:03 pm
My Jack will be 14 this coming Sunday! I don’t know how it happened so quickly!! I LOVE your blog – can relate completely to everything you write. Thank you for sharing your heart so beautifully!!
Rebecca
April 27, 2015 @ 5:42 pm
i know how you feel. I raised an autistic girl. We got through it. She’s ok and we’re ok. Its not perfect but it’s do-able. I just loved and repeated and trained and prayed and prayed. And never gave up. I know you will do the same. I will be praying for Jack and for all of you that he will find his place in his world and that you all will be ok. Because sometimes ok is good enough x
Lori OBrien
April 27, 2015 @ 6:12 pm
My son is now 18 and will be graduating this year. Your blog took me back to when he was in 5th grade…the first time we were acquainted with the word “Asperger Syndrom”. Denial took root over the next 4 years as we tried to account for his nuances with individual explanations. Fast forward and he can tie his shoes, ride a bike (though he still doesn’t like it), achieved Eagle Scout, he’s taking his first college course (computer intro, what else?), and has driven back/forth to school (20 min each way) for over 6 months without incident. So proud of my kiddo! They grow quick, but some things take a bit longer. He’ll be graduating H.S. next month, but will stay here while he goes to Community College, and if not ready for that, will find his first employment. We still have work to do together before he can maneuver in his world. It’s still a 2 steps forward 1-3 steps back…..But with God in his life, and parents available to assist (though not without mistakes!)….we have such hope! Thank you for sharing your journey!
NickyB.
April 27, 2015 @ 6:26 pm
So many similarities as my son will be 11 in a couple of weeks. I feel the same way. Time is running out. I’m doing my best to make the best use of the time I have left.
Carol Bruce
April 27, 2015 @ 6:48 pm
Happy Birthday to Jack.
Mike Idenden
April 27, 2015 @ 8:58 pm
First of all… Happy Birthday to Jack!! I’d also like to thank you for perfectly encapsulating everything that goes through my head every day… from the hopes & wishes to the mistakes & the frustrations & everything in between. I’m so grateful that I found your blog. My Nick will be 14 in June & you have repeatedly made me feel like you’re inside my head. Thank you Carrie.
Deb
April 27, 2015 @ 11:11 pm
What a beautiful photo of Jack. And you made me cry, just a little. My baby girl turns 23 in less than two months.
Tammy
April 28, 2015 @ 12:31 am
I look forward to Monday because I get to read your blog. I feel like I have a friend who understands the life we lead daily with our 9 year old Nash. It all seems to fly by….I hate this! I want the slow down button 🙂
oshrivastava
April 28, 2015 @ 3:25 am
Reblogged this on oshriradhekrishnabole.
Kim Landis Black
April 28, 2015 @ 10:14 pm
Happy birthday jack!!
Kathy
April 29, 2015 @ 6:06 am
Carrie, I love your blog!! But I have one question—and it’s been bugging me for a while—what exactly is an Orange Blossom?
Carrie Cariello
April 29, 2015 @ 7:27 am
Haha…an Orange Blossom, according to Jack, is some kind of orange creamsicle on a stick. He loves them!
Libby
April 29, 2015 @ 9:59 pm
You lead such an inspiring life. I truly believe God only gives Special children to Special people. I can’t even begin to imagine what you, and Jack, and your family experience on a daily basis. It is as if the days go by so slow, but the weeks go by so fast. Not having children on my own yet, but having lots of experience and education with Early Intervention and Family Therapy, I can honestly say that I believe you must be the best and most perfect mama for Jack. As you said, he will do things…but he will do them on his own time. As humans today, we fret so much over time when really we must remember we have no real control over our time anyway. Continue to be encouraged and know that Jack loves his mama and Jack doesn’t see your shortcomings or failures. Ultimately, maybe Jack’s autism is a protection against certain aspects of the world and keep him from becoming jaded and bitter like the rest of us. God bless your family.
Mary Ann
May 1, 2015 @ 7:07 pm
Carrie, in the three months I have been reading your blog, I have always thought of you and Jack as my “crystal ball.” Thank you for your testament, it means so very much.