Why I (Sometimes) Love Autism
The other day, Jack and I had to run into the grocery store for a couple of things. We needed tortillas for dinner, milk, and—according to Jack—yellow apples.
He’ll only eat them if they’re yellow. Yellow apples—again, according to Jack—are the best apples in the world.
We talk a lot about yellow apples. Like a lot a lot a lot a lot yellow apples they are for the best they have to be yellow buy them yellow not red not green but yellow.
During the short drive to the store, our conversation went something like this:
[Abridged version.]
“We need. The yellow apples.”
“Yep, yellow. I’m on it.”
“You can’t be on an apple. They are for too small.”
“Uh huh.”
“Yellow.”
“Yes, buddy. Yellow. I am on—I will buy them,” I said, catching myself before I made the same literal mistake again.
It was dark out already, thanks to the cruelty of daylight savings time, and I was tired. I still had to pick Rose up from dance and drive Charlie to football and fix dinner and make Henry take a bath and Joe and I had argued earlier that day and my nerves felt all jangly. I didn’t want to talk about apples anymore.
“Mom. For how to. Feel better do you.”
“What do you mean, Jack?”
“Feel better.”
“How do I feel better or how do you feel better?”
“Yes.”
“Which one?”
“To feel better.”
“Is something wrong? Are you hurt?” All of a sudden I felt nervous.
“Not to hurt.”
“What, then?”
“How do I feel better?”
“TELL ME, Jack. What are you saying?”
“For nothing.”
“Is something hurting you?”
“Yellow. They have to be yellow.”
“I KNOW, Jack! You are literally driving me insane.”
“YOU ARE LITERALLY DRIVING ME INSANE!” he echoed at the top of his lungs as we pulled into the parking lot.
We walked into the store together, bickering and griping, and I couldn’t help myself. I pictured a lifetime tethered to this boy, a lifetime of trips to the grocery store niggling about apples.
Lately I’ve noticed quite a few websites proclaiming to be “Asperger Experts” and “Autism Specialists.” These are funny to me. Funny-funny-funny.
Yet not so funny.
I live with autism twenty-seven hours a day, three hundred and sixty-five days a year.
Jack lives with autism thirty-two hours a day, three hundred and sixty-five days a year.
According to common core math, that’s exactly, 1,239,708 hours of autism experience between the two of us.
Yet the spectrum disorder takes us both by surprise every single day. We are not experts. In fact, we are the opposite of experts, whatever that is.
(Amateurs. That’s the word I was looking for. We are autism amateurs.)
Maybe I could find an expert to tell me why, after making waffles every single Thursday for over two years, Jack stopped altogether. He won’t touch a waffle. He won’t look at a waffle. For this boy, waffles have ceased to exist.
Or how he can barely lift his head to say hello to his grandmother, but when his brother, Joey, walked in on Saturday morning—tousled and disheveled from a sleepover—he suggested, “Let us. Offer for Joey a pancake.”
I could use a specialist to sit next to me at the kitchen counter while I watch Jack mix his new favorite pancake batter and tell me what to do when I hear him whisper to himself, “I am. Lonely. Lonely. Lonely.”
And when I ask him–in a voice that I am struggling to keep even and still—why he feels lonely, should we have a friend over, or play a game together, and he clamps his hands over his ears and says no more talking about I can’t for talk about, well, I could really use an expert to help me decode his mysterious communication and the pain he’s hiding.
From the moment Jack was born, I have loved autism for the same reasons I hate it: it is whimsical and slippery and erratic. It equal parts delights and depresses me.
Over the past few years, I’ve had the great fortune to meet two brilliant, remarkable psychologists—the closest I’ve ever come to meeting someone who is an expert in this field. One of them explained to me that people are drawn to those on the spectrum because it challenges all of our assumptions about human behavior.
When she said this, I thought about all the assumptions I’d made about my son and his autism in the past eleven years.
When he was first born, I assumed I was the best person for this job.
Yet when he was a toddler, I felt so ill-equipped to handle his tantrums and his whining and his wandering that I was grateful to hand him over to an integrated preschool for a couple of hours. Some days, I could not wait for school to start.
I assumed the tantrums he threw were because he was difficult and hard to please and stubborn.
I assumed he didn’t sleep because he didn’t want to sleep.
I assumed he would outgrow it.
I assumed that the invisible umbilical cord binding us together would eventually stretch until it—what? Not snapped, exactly, but dissolved. Disappeared, to some degree, leaving us to buy whichever apples we prefer.
I assumed I would be a good mother—not a great mother, but certainly not the kind of mother who would scream at her special-needs son that he is driving her insane in the parking lot of the grocery store.
I expected the pain to ease.
I assumed we would be eating waffles on Thursday mornings every single week for the rest of eternity. That’s why I bought a giant bag of waffle mix from Costco.
I thought I didn’t know how to love unconditionally.
I assumed it would be harder for me than it is for him, because I didn’t think he processed loss, and regret, and loneliness. I thought he would never understand what he’d been denied in the complicated genetic battle that landed him on the spectrum’s sloping bell curve.
I assumed I wasn’t the best person for this job.
I assumed that every day autism presented me with a choice: to feel frustrated or help him make progress. Now I know it is okay to be feel both. They are mutually exclusive, yet oddly concordant, even necessary together.
Some days, they are linear—other times, they leapfrog over one another—anger and growth, irritation and enrichment.
And when it comes to this boy, no conversation should go unfinished. No matter how painstaking and irritating and hard it is, I still have to tease out the words.
Because after a million hours with autism, I know sometimes progress tiptoes in like a mouse after the tiger’s fierce roar. When this happens, my satisfaction—my joy—is always tempered and bittersweet, like tepid coffee or bacon that has been burned.
I am hungry for it, but it never tastes as good as I’d hoped.
“Hey, Jack? Remember last night in the car? What did you mean about feeling better?”
“I am PACKING. MY SNACK NOW. The BUS is for in six minutes.”
“I know. Can you put it down? And answer me? Do you feel bad?”
“Yes.”
“You do? When?”
“Sometimes.”
“Like when, buddy?”
“In school.”
“You feel bad in school? Why?”
“In school. I cry on the inside. Because for I am misssing you.”
And he shoved in the big yellow apple he’d chosen the day before, zipped up his backpack, and walked out the door.
Tammy
November 9, 2015 @ 10:34 am
I am struggling today and most days with the strangeness of autism. How it sometimes goes in way that nothing ever should. I get asked uestions about what autism is. I can give a clinical statement but that does not cover how painful it is when the school picture comes to me that I have paid for and the autism mask is there and it screams….AUTISM! MY CHILD IS DIFFERENT AND I DON’T WANT HIM TO BE! Yes, I hate autism! When things are going badly I look at my son and say….I hate autism. Nash will smile and say “I hate autism!” We treat autism like a cousin we don;t like to play with. This makes it easy for Nash to know I do NOT hate him but the things that autism brings to our house. Thanks for being there 🙂
Theresa
November 9, 2015 @ 10:53 am
In one second the tears welled up and I was gone. My son is not technically autistic but he has struggled with learning disabilities and some pretty tough social bullying throughout his life. He is a senior in high school now and I still cry sometimes knowing that he is always walking uphill trying to “fit in”. When (hopefully) he graduates this year I really think 30 or 40 of us should walk with him. The village of friends and professionals who have done their part in helping to raise his head to process and thrive in the world. It is isolating for us Moms who have these kids. We have to work hard to not just close the door to the other families of children who take multiple AP classes and attend every social function with their group of 20 close friends. Thank you, Carrie, for keeping your door open for all of us who struggle with the day to day and who have the need to talk it out now and then.
marie
November 9, 2015 @ 10:55 am
This is wonderfully written. As a mother, I feel pain whenever my child is in pain. That is the hardest thing to bear about “Autism.” We watch them go through their struggles every day with respect to school, communication and loneliness but we know that there is a very loving and intelligent little boy “in there.” At the same time, we struggle with our own frustrations toward the autistic behaviors of the child that we love so dearly. My son is 17 and he doesn’t like the idea of ever moving away from us. Our kids love us and find happiness in us. That is the bright side in our daily challenges. That is, we are able to bring them some happiness among their daily struggles. **Hugs and Blessings to you and your son***
Pam Carlson
November 9, 2015 @ 11:53 am
Carrie, thank you for putting into words the way I have so often felt about my 30-year-old son with Autism. I cry when I read your blogs.
Pam Carlson
November 9, 2015 @ 11:53 am
I also laugh out loud when I read your blogs! 🙂
Jeannie
November 9, 2015 @ 5:56 pm
That is exactly what I said last week about Carrie’s post. I agree – even though her situation’s not just the same as mine, I recognize the truth in what she writes So blessed by this blog.
Mxtrmeike13
November 9, 2015 @ 7:26 pm
Thank you for this glimpse into Jack’s life (and yours, too!). I’m in my last year of school to become a therapist and I’m looking to specialize in 1) autism spectrum disorders and 2) gender dysphoria, two things that oddly seem to go together frequently. It’s very refreshing and great to read about ASD from the caregiver’s perspective, and you do it in such a beautiful way.
Deb
November 9, 2015 @ 10:02 pm
This for to make me cry.
Bianca
November 10, 2015 @ 7:04 am
Your Monday blogs remind me show more care & patience towards my 3 yr old boy. Your blog makes me a better mother.
Marlene
November 14, 2015 @ 5:15 am
Carrie, I laughed and cried as I resonated with your story. Thank you for your honesty, for baring your soul to strangers…. you are a blessing.
Sonya
November 14, 2015 @ 4:16 pm
Go to NAET natural healing for autism
Dineen
November 14, 2015 @ 4:57 pm
My daughter’s conversational idiosyncrasies that sometimes feel like emotional root canals, teasing words and phrases out over the course of days often have just this sort of feeling. Oh, the joys of loving someone on the spectrum.
As a wife to a man with ASD and a mom to a daughter with it as well, I am happy to have found your blog through Ann Voskamp.
Pam
November 15, 2015 @ 7:26 am
Today was hard. Very hard. Frequently at a loss in dealing with all the fallout related to my precious boys spectrum issues. So glad I found your blog cause sometimes it just helps to know that others ‘get it’ and I am not alone in some parallel universe with all this.
Vicki
November 15, 2015 @ 2:01 pm
Beautifully written. You are a blessing, not only to your family, but to all Moms. I hope you feel the support of other women as you go about your day.
sheri Shingler
November 17, 2015 @ 2:04 pm
Isn’t it strange how lonely autism can feel? Sometimes I don’t realise it until I read your words
Fuzzy Panda Barista
April 4, 2016 @ 9:14 am
This is so beautifully written. It is genuine. Thanks for sharing.Most of us know very little about Autism and Asperger. Just know this: you are the expert on your son and therefore you are the best mother for him. May God give you strength, patience and wisdom every day.