Because of You
I almost lost my marriage because of you.
It was the year my son named Jack was born, and you were born right along with him.
At first, we had no idea. He was just a squirming chubby baby who didn’t sleep too well and hated to be swaddled and cried a little more than we expected.
Slowly, you made your presence known.
The sleep got worse.
The cries got louder.
The quiet got quieter.
He was sick all the time; reflux and ear infections and a deep, barking cough.
Then eighteen months later, on a gray day in early November, an official diagnosis of autism spectrum disorder.
I charged full-steam ahead. I wanted to read about you and research your symptoms and figure out the best plan for speech and occupational therapy and maybe some sign language and then integrated preschool and if we had time we should do music class because everyone knows music is great for kids who don’t talk a lot.
My husband, Joe, took the wait-and-see approach. He wanted to slow down, and understand you. He wanted to be thorough before we jumped into anything.
I was right, he was wrong. He was right, I was wrong.
I was frantic.
He was methodical.
I was raw.
He was angry.
Because of you, we were both lost.
Oh sure, we never fought about you specifically. Instead, we fought over who got more sleep and who spent more money and who did more housework; all while a wolf knocked quietly at the door—an interloper in the dark of the night.
Inside every marriage is a secret language, a private code of nicknames and jokes and memories. Some days are full of a thousand tiny hurts, followed by a million small recoveries.
Once you bared your long, yellow teeth in our house, the jokes ebbed. Our nicknames faded, and our attempts at recovery were dwarfed by the hurt. Most of our spousal dramas played out on our big tan couch, with one of us rocking and patting a fussing Jack.
I said I would look into—
Why can’t you just calm down?
Calm down? Calm down? Something is really wrong with him. You know it’s true.
I always hated that couch.
Because of you, our young marital ground was sliding beneath us, and separately we each battled the nagging feeling that the landscape of our little family was shifting for good. We were a statistic, a number, a plot line on the spectrum’s sloping bell curve.
Ever since November 3, 2006, you and I have been like two boxers in a ring, circling and jabbing, trying to gain whatever ground we can against each other.
We are brother and sister at the end of a long, hot car ride, poking and needling and annoying and griping.
We are the quintessential cat-and-mouse, and we take our turns chasing and hiding, hiding and chasing.
I am always watching you to see what move you’ll make next.
And like a stray cat in the dark, you are always waiting for me to give up or get tired.
I will never get tired.
Well, that’s not exactly true. Some days I am very, very tired. I am tired because you wake him up at the crack of dawn and told him that he has to make pancakes because he made pancakes on this exact day two years ago except this year is a Leap Year so it was different but still he should make them.
But I will never give up. I vow to be as tenacious as you are determined, as resourceful as you are wily, as steadfast as you are slippery.
Because of you, I came this close–thumb and forefinger close—to crashing my minivan into an oil truck, after you made 6-year old Jack shriek and scream when he saw an orange cone because he was afraid of anything that was orange that year.
Because of you, I missed the first half of my oldest son’s fourth grade play, when you whispered in 9-year old Jack’s ear that the auditorium, with its colorful stage and crowded audience, was too loud, too bright, too much.
Because of you, he feels threatened by every single thing around him—a loud noise in the kitchen, or a street light that suddenly goes out, or a different item on the lunch menu. He spends his day in a perpetual state of fight-or-flight, trying to protect himself from an invisible, nameless attack.
Because of you, 11-year old Jack has the hardest time with language, and he communicates with the world around him in his very own dialect. Sometimes it is funny, sometimes it is frustrating, but always it is fascinating.
And how would you like your burger? Medium?
NO! I want it LARGE! I want a LARGE BURGER.
Because of you, I have to watch his inner torment over something as simple as choosing the right clothes to wear; his ceaseless longing to fit in with those around him balanced precariously against his need for order and routine.
Everyone. All the boys. They for wear shorts. But I will be too cold. To wear shorts. I think for my turtleneck.
For months now, you have trapped him inside of his own private blizzard—you have cloaked him in fury and tantrums, curse words and depression. He is sad one minute, mad the next.
My son is hurting and I can’t reach him and this is all because of you.
Although his diagnosis is clear, his future is as hazy as a morning in springtime. A high school diploma, a driver’s license, and an apartment of his own—they all dangle just above his head, like lightbulbs burning in a chandelier.
Because of you.
Because of you I had to call our local police department. I worry he will run away from me one day into the street or through the woods or out of the car, and I will need their help to find him.
I want them to know about you—about the wolf that shadows my child and clutches him tightly, even as he thrashes and squirms and begs for release.
Because of you, I worry all the time.
I worry about the f-word in the line at Chipotle because they ran out of guacamole and he really, really wanted guacamole and I worry my about my other four kids and whether their childhood will always be overshadowed by the phrase your brother has autism and I worry he eats too many pancakes.
I worry he spends too much time on the computer and what will happen if I die and whether or not I should make him brush his teeth better.
I worry one day my marriage will buckle beneath this tremendous weight, that we are just one meltdown away from complete chaos, because parenting this boy together is so hard.
I want to hate you, autism, but like a child picking petals from a flower, I vacillate between hate and love, loathing and tenderness.
To hate you would be to hate a fundamental piece of my Jack-a-boo, and that is something I can never ever do, no matter which way the silky petals scatter in the wind.
I know you love this boy almost as much as I do. In some ethereal way, I know you chose him—you chose me, and us.
Because if you, I know the kindness of strangers and the devotion of teachers.
Because of you, my children are flexible, and tolerant, and tender, and kind.
Mom, it’s no big deal. Nothing really happened in the beginning of the play anyway.
Because of you, this dark-haired man and I found one another again. In the midst of diapers and speech therapy, doctor’s visits and long, sleepless nights, we rediscovered our own private language.
He said he wanted a large burger, it was so cute.
He decided on a short-sleeved shirt with cargo pants.
I can’t believe you got him in here before the second act, headphones was a good idea.
So today, autism, I’m going to hang up my gloves and stop chasing you. I’m going to try to understand you, and give you the room you need to help this boy blossom.
I only ask one thing. Share him with me. I miss him.
March 21, 2016 @ 10:04 am
Oh girl. This is good. Very timely and a little heart wrenching. Great post!
March 21, 2016 @ 10:14 am
Thank you for this post. My son had horrible reflux too as an infant. I must have gone through 7 different pediatricians in order to “fix” it. In the end, I think he just outgrew it. 🙁
March 21, 2016 @ 10:32 am
You are definitely a gifted writer. What a moving post! I hope your son’s spirits will lift soon. I am sure you had him evaluated for depression and generalized anxiety disorder, diagnoses which may be delayed or missed in children on the spectrum. In our case, we initially tended to attribute most symptoms and behaviors to autism. Eventually, we realized that there was another diagnosis as well, which changed the way we and her physician approached treating her symptoms.
March 21, 2016 @ 11:56 am
Definitely could be depression and/or generalized anxiety disorder going on. Still waiting for an initial assessment for my daughter. In the meantime, she’s been obsessed recently with why we adopted the cat with whom she shares a heightened sibling rivalry that goes both ways; and why won’t we adopt our daughter (no explaining she was a gift to us directly from heaven and we didn’t need to adopt her). So she’s screaming/crying at me yesterday ‘WHY WON’T YOU ADOPT ME’ and ‘I’M NOT GOING TO DIE FOR THE REST OF MY LIFE’. I promptly decided to adopt her. Really enjoy your writing.
March 21, 2016 @ 12:50 pm
Perfectly stated, Carrie. Perfect.? I *get* everything you were talking about.
March 21, 2016 @ 12:50 pm
Perhaps if you stopped looking at something that is an integral innate part of your child as something separate, alien, something to fight, and accepted your autistic child as the person that he is, you might find more peace in your heart and in your family. I know that there is so much messaging out there making autism this fantasy boogie man than families need to “fight” to “rescue” their child, but I have found that as I have moved from fear to acceptance, my life and the lives of my three autistic children have improved immeasurably.
March 21, 2016 @ 1:07 pm
I have two on the spectrum, ages 4 and 6. I saw a lot of myself in this post. Very well-written. 🙂
March 21, 2016 @ 1:32 pm
What a gifted writer you are. I have an autistic daughter so relate to every word. The way you express it on paper is breathtaking and beautiful and I wish you’d write a book. ❤️
March 21, 2016 @ 1:42 pm
Thank you for the great post! We just visited a family with an autistic boy… We got “warned” by the dad, and we could clearly understand the difficulty by looking at his mom… I hope one day they will learn how to love hating/ hate loving this situation…
March 21, 2016 @ 2:24 pm
“I can’t don’t know” used to be the cute statement in our house. I still say it. Ellis, not so much. He played basketball this year. His play was “Jelly (his nickname) on the block. When he heard that he knew he was supposed to get under the basket. I’m getting t shirts made up. Our autism diagnosis anniversary date is May 2005. Autism…..the love hate war…
March 21, 2016 @ 2:56 pm
Carrie,
So beautifully written. Thank you for allowing us to enter into the paradox of life with autism. Jack and your other children are certainly blessed to have such a strong woman as their mom.
March 21, 2016 @ 4:34 pm
Carrie, you are an incredible writer. The way you can paint pictures and stir up emotions with your words – it’s a gift. It’s also a powerful tool. Right now, you are using that tool to build up an image of Autism as the enemy, some sort of demon possessing your child.
In the middle of this piece, you write “To hate [autism] would be to hate a fundamental piece of my Jack-a-boo, and that is something I can never ever do, no matter which way the silky petals scatter in the wind.”
That message, however well-intentioned, is drowned out by the thousand words that came before it. Please. Reconsider the way you talk about your son’s neurology. If he were reading these words, would he pick up on that one line towards the end? Or would he, like me, feel an overall message of hatred and blame himself?
March 21, 2016 @ 5:17 pm
Hi Vi, thank you for your reply to Carrie’s piece. It is always good to have varying points of view. As a mother of an autistic son, I relate very strongly to what she is saying and feeling. I want my son to be free of the suffering he has a result of autism. I am angry and hurt and suffer myself that he must go through so much because of autism. That is why we, just every once in a while, in pain and sorrow and tired and grief and frustration let out a teeny little hatred for this terrible autism that causes so much suffering in our child and wish it wasn’t so. It is never our deeply loved, much sacrificed for child that, it is for the autism. It is not just neurology. It is his life and his feelings and his hopes and his dreams and his friends and his wife and children, much of which he won’t get to have all because of autism. I hope you can understand.
March 21, 2016 @ 4:46 pm
It was wonderful meeting you Saturday in Framingham. I laughed and cried along with everyone else. You truly are a gifted writer and speaker. Thank you for sharing and speaking so frankly about your familie’s challenges and victories with Autism.
I wasn’t so lucky with my marriage but I wouldn’t trade my two boys and their Autism for anything. They have taught me more in their 17 and 13 years and given me more love and gifts that I will treasure for a lifetime.
Keep doing what you do. Thank you.
March 21, 2016 @ 5:46 pm
Thank you so much, Carrie. I read your postings every week. I am grateful. I am to learn what you go through and how you cope and get to know your family. This really helps me so much. And therefore, you and your beautiful writing and your column and your family help my son. I also weep nearly every single week. I weep for the love and the sacrifice and the exhaustion and the patience and the suffering and the grief.
March 21, 2016 @ 11:13 pm
Carrie…thank you so much for your posts. I am a mother of an 8 year old boy who has autism. It’s so hard to put into words how I feel about autism and what it means for my son and us as a family. You have a way of putting into words what I think about but can’t quite verbalize. Thank you!
March 21, 2016 @ 11:46 pm
Heart wrenching. Thank you. I feel you deeply. You resonate so loudly with me. Hugs. Different diagnosis, but still similar torments.
March 23, 2016 @ 5:24 pm
I deeply feel your pain. Being an older grandmother with a grandson on the spectrum. I understand how difficult it is when there is nothing you can do to change what you have been handed. Continue to fill Jack with your love and remember God will never leave you alone, he shares your pain even more then you can understand. Thank-you for sharing your most inner fears and frustration. God bless you and your family this Easter Season.
March 24, 2016 @ 10:55 am
Beautiful., elegant.. Honest and so touching. I can relate to every word. Thank you for sharing. Thank you for writing.
March 28, 2016 @ 12:54 pm
Carrie, I truly feel like we are walking along the same path at the same time – we are in the midst of the storm and I can’t see the shore for the waves. I know there is some turmoil going on in my son’s head but he can’t tell us what it is or how we can make it stop. We are searching for someone that can talk his language and help us get through…but every day, my emotions range, much as yours, from adoration to fury and frustration – back to love, always love. You put into words so much that I think about but don’t express to anyone. Thank you for speaking and writing so well – for those of us that can’t. And please know, that even though we don’t know one another personally, you and your family are in my prayers.
April 1, 2016 @ 8:00 pm
This was so powerful and moving. I have three children, none diagnosed with autism, but all with anxiety or bipolar disorder. Different monster, similar situation. We just want so much for them. Want the life we imagined for them when we felt them kicking inside. But it is what it is. Every person, every child has some burden or challenge they will face. Some are more visible than others, that’s all. Some are lifelong, others come and go. “Acceptance” helps, but so does being able to honestly express how pissed off or sad or jealous or overwhelmed we are as parents. I often feel desperate, exhausted, isolated, misunderstood, defeated. Stories like this are like a soothing blanket wrapping around me, saying “You are not alone.” And it reminds me that within the struggle there are many, many blessings. Thank you.