You see a parent who doesn’t care enough to discipline their child.
You think if you were that child’s parent, that child would never behave that way.
What you don’t see is that our children are in pain. They’re lashing out against a world that assaults their senses. They’re sweet, they’re funny and they’re beautiful and bright. They’re each individuals.
And I for one work with every breath and piece of energy in my being to make my boy’s world easier.
You don’t see the constant communication going on from home to school, the endless phone calls, the meetings, the social workers, the educational psychologists, the sensory toys, the books upon books we soak up in the hope of making life easier, in the hope to making people like you understand.
You don’t see that our children are perfect. Yes, they spin, they talk to themselves, they stand out in the playground. But they’re gentle, they’re sensitive and they’re trying to learn social skills and a whole hidden language that neurotypical people are born with.
You see a naughty child; I see a child who was brave enough to leave the sanctuary of home today. A child who feels like his eyes may explode because of how bright the sun us. A child who covers his ears and rocks side to side because there’s too much noise, and he can’t make it stop. A child whose own clothes irritate him as they scratch against his skin.
I don’t know many people who would be brave enough to leave the house when their world is so terrifying, but our children have to do it daily.
Stop judging, start smiling.
Yes, my child is different, but he’s brave and he’s clever, and if he can face this chaotic world every single day, then he can do anything. He can change this world, and I am here to help him.
But first I need to change your opinions. Our children aren’t naughty, they’re not bad; they’re very much loved. They have amazing parents who would change the world in a instant to make their children’s pain go away.
I used to think love — deep, radical, boundless love — was a family thing. Maybe a close friend thing. But I was wrong.
I started to notice it after my baby (“Baby Bee”) was born, before we had the autism diagnosis. We had doctor appointments and specialist consults and hours of crying and screaming and not knowing what was wrong. We suddenly had people at our door with food. People coming to clean the kitchen and take out the trash. People running to the store to pick up prescriptions. People stopping by to offer a listening ear. We hardly knew most of them.
Fast forward a few months and we experienced the daily kindness of receptionists and support workers from private occupational therapy to public Early Intervention offices. Folks who worked hard to get us connected to services, said comforting things and never forgot to ask how we, the parents, were holding up.
Then there was the kind mama from our local Buy-Nothing group who responded to my desperate plea for an infant swing (for my 25-pound toddler) because our old one broke and Baby Bee doesn’t sleep without it. (We’ve tested this theory.) That day, she drove out to my house, with her own kids in tow, to drop off a replacement swing. On my porch. While I was at a doctor appointment with Baby Bee. I wasn’t even home to thank her. I didn’t know her.
Did I mention my town raised money to install a swing at our local park for kids and adults with disabilities? And what the community didn’t raise, the local government covered? I felt the entire community’s support as they created a space my son and others would someday feel comfortable exploring.
I felt that deep love again when I met up for our first playdate with a new friend who just moved to town a few weeks back. “You’re a good mama,” she said as I was silently wondering if I’d done the right thing by bringing my son to someone’s house and awaiting his inevitable meltdown. She meant it.
We live in a small town where love abounds. I’ve come to expect a high level of support from neighbors, organizations, moms, and yes, even the local government. We’re incredibly lucky.
Consequently, we’re nervous to venture beyond our community’s cocoon.
But yesterday, love showed up silently, in a city that’s not my own. We went to one of those big box stores to stock up on groceries (and thus reduce our need to venture out again anytime soon).The decision to bring Baby Bee grocery shopping is usually more out of necessity than true choice. We got out of the car.
“Cart. Cart. Cart.”
I knew we were in for it. We approached the red shopping carts stacked up against the building. It was busy. People rushing. Cars pulling in and out. “Cart! Cart! Cart!” His chanting increased to a frantic level.
Deep breaths. “All right, Baby Bee, we’re going to put you in the cart so Mama can get groceries.” I held my breath waiting for what I knew was coming next. The screaming started; I was grateful we were outside. I wheeled us over to a less busy area, partly for him and mostly for me. Something happens when your child gets a diagnosis or acts differently than other kids. You start to pay more attention to what people say and do. You start to listen every time some stranger — who is still developing their own skill set of appropriate social commentary— demonstrates they have room to grow.
And it’s always at the grocery store because it’s just about the only public place you bring your kid anyhow.
I whispered our next steps, hoping it would soothe him. “Now, I’ll buckle you up so you stay safe in the cart. Here’s the buckle. Click. Click”
He was yelling now. “It is loud, isn’t it, Baby Bee? I hear lots of people and cars and carts. Listen? Do you hear that? Woosh, woosh.” I did my best imitation of the electric doors we had to enter sooner or later. “That’s the sound of the doors opening and shutting. In a moment we are going to go through those doors and walk up and down the aisles to get the food we need.”
“LOUD! LOUD! LOUD!” and then suddenly, “Bike. Big. Bike. Bike. Bike. Bike.” I knew what he was thinking. Our local grocery store has full-sized bikes around the perimeter as decoration. I guess it’s a small town thing.
“The bikes aren’t at this store, Baby Bee.”
“BIKE! BIG BIKE! BIKE!” He was fixated. He’d spend the rest of our trip intermixing “Bike!” and “Loud!” and “Cart!” If that was all that happened, we’d consider it a success.
But then someone bumped the cart. He was crying now, the full-on meltdown crying that seems to have no end when you’re in the middle of it. Occasional bursts of “Loud!” and “Ouch!” came through with a fair number of “No! No! No!” thrown in for good measure.
People were staring and avoiding in turn. Shaking their heads. As a parent, you wonder if people will blame your parenting. Your genetics. Your decision to reproduce.
Or the fact that you went back to work at two months postpartum instead of three.
When I looked up, I saw her. A mom with a preschooler stood to the side, watching. I whispered into Baby Bee’s ear to drown out the sensory chaos. The mom leaned in to hear what I was saying. She watched the way I pressed the sides of my hands on either side of his body to provide some deep pressure and used my body as a shield from the visual stimulation around us. Her daughter stood, watching us too.
Several minutes later, Baby Bee had calmed and picked up his “bike, bike, bike” chant again, which I took as a positive sign. I gathered my courage and faced the ever-wooshing doors.
She was still there. Not staring. Not rudely prying into our difficult situation. But standing respectfully off to the side seemingly observing, educating herself and maybe rehearsing the conversation she’d have with her daughter about how everyone has different challenges in life. Her look was compassionate and encouraging.
And then she caught my eye and smiled at me with a smile that conveyed it all:
“There’s more of us out here, you know. We’re here if you need us. If you’ve got too much going on, we’ll bring you dinner and clean your kitchen. And I noticed that your kiddo has a lot going on, are you doing OK yourself? We’ll drop the infant swing or whatever else on your porch, if you can’t pick it up. I don’t mind at all. Oh, and please, don’t worry, we already made a donation for accessible play structures at our park — your child is welcome any time he likes. Remember, you’ve got allies all over the place, not just at home.
And you know what else?”
She nodded toward my little guy, chanting away, and smiled again.
“You’re a good mama.
A really good one.
I mean it.”
“Thanks, Mama,” I silently smiled back. “So are you.”
The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.
Not everyone understands autism — including first responders. And if an individual on the spectrum is, say, pulled over, it may be difficult for him or her to act in a way society deems appropriate. To prevent any misunderstandings, the Autism Society of Alabama (ASA) has partnered with the Alabama Department of Public Safety to create autism identification cards (below) that people with autism can show first responders if need be.
Since announcing plans for the card (which has not been released yet), hundreds of parents and caretakers have requested one for a loved one, Bama Hagar, ASA’s Police and Program Advisor, told The Mighty in an email. Hager’s 14-year-old son has autism.
“The communication and delayed processing challenges associated with [autism] may be interpreted as noncompliance by an officer, for example,” Hager told The Mighty. “The card, kept near the person’s ID or non driver ID could be presented so a first responder is alerted to the presence of ASD symptomatology.”
Families who wish to apply for an ASD Alabama identification card may email Bama Hager at [email protected]alabama.org or call the Autism Society of Alabama for information on date of availability.
“This is a win-win for everyone,” Lt. Bart Barta of the Coral Gables Police Department in Coral Gables, Florida, told The University of Miami. “It helps both sides in any given situation with law enforcement and first responders, when people might be stressed.”
You can head here to request a customized card from The Wallet Card Project.
Well, gang, I knew it was coming. My blogging wife finally came up to me and asked, “Will you write?”
Of course I will write. I have thoughts and opinions. Wait a second. I just agreed to write something thousands of folks from all over the world will potentially see. Hmm… issues? Nah. I’m going for it.
My line of work involves way too much windshield time. Alone with my thoughts, gas station breakfast and a lukewarm cup of coffee. This alone time is the key to me being there for my wife, Nikki. I’m doing my best to be the guy she needs me to be. Because here’s the deal — she’s not normal. Those of you reading this who just giggled out loud must know her. Those of you reading this who thought that was a strange thing to say about my wife need to meet and know my Nikki.
The simple deal is that my Nikki is my perfect. From the day I met her, I knew it. When I say she’s not normal, it’s actually meant to compliment her occasionally insane levels of compassion and caring. She doesn’t yell — ever. This is not normal and completely awesome at the same time. God’s plan? I believe He thought the world needs this combination of Nikki and our son, Tucker. He needs people who will power through the tears of struggle and dance their butts off every chance they get. They will live it. They will learn it. They will grow from it. Nikki often shares our story, and others will benefit from it. Tuck can’t have a normal mom so God gave him Nikki. She’s our angel.
We don’t believe in normal at our house. Honestly, it took me awhile to buy in to it, but the underlying truth is that everyone has their own story and labels suck. Therefore, you be you.
I know I’m supposed to be writing about my thoughts and feelings regarding autism, the spectrum, Tucker and my relationships with all those involved, but to get to that you’ve got to understand where I’m coming from. I came in late to the party. Nikki and I met and married after we had kids from previous marriages.
I wasn’t around for the initial early childhood trials and tribulations Nikki and Tucker lived through. I’d heard of autism but never had any direct interaction with kids or parents coping with it. I knew there was a spectrum but had no idea how stinkin’ big it was or what it all entailed.
However, in the beginning, I knew a couple things for fact.
I was head over heels in love with this woman.
This was a package deal.
I knew I’d better get dialed into this autism thing. She told me all about upside-down TV watching in the reflection of the window glass. She told me about heavy blankets. She told me about brushing his body. She told me about bumps and bruises. She told me about tags. She told me about socks. She told me about grounding and hugging. She told me about huge poop. She told me about all kinds of crazy business, and then I met Tucker and had about a billion questions. This is when I first had the spectrum explained to me in detail.
This is also when I first came to understand the incredible challenge facing everyone touched by autism.
This is also when I learned that autism is not something you cure but rather something you cope with.
Tuck is over on the high-functioning end of the spectrum, which means to the casual observer, he’s a naughty kid. Can’t sit still. Too loud at the wrong times. Obstinate. Guess what? Everybody has a story.
The old me would have thought the kid is a total sh**head.
Thanks to my guy, I now try to emulate my lovely wife’s goodness and leave my judgy-mcpudgy pants in the closet.
Every day I read my “autism” Google Alerts and hear about the troubling stories going on in our community. Between teachers who allegedly lock their students in cages to try to control them, to other teachers who allegedly show up hungover to school where they can get away with it because they have only nonverbal students, it’s clear to me that we need to do a better job of weeding out teachers who have no excuse being in our loved ones’ schools (it also takes attention away from the amazing teachers out there).
And then there’s you. The teacher who told a student that only white children could have autism so “you don’t have to worry.” You may have thought to yourself, “What was the harm?” No other adult was around when you said it.
However, I was there. I was 26 and working at an after school program. And I heard you.
For the longest time, I wanted to say nothing — to let it go like I misheard the conversation you had with the boy completely. Truth be told, I’m not sure what your intentions were, but what I want to tell you today, if you ever read this message is this:
Today, African-American and Hispanic children are diagnosed far later than Caucasian children, according to the Centers for Disease Control and Prevention. Still, I continue to hear the stereotype that autism is a “white person disorder.” As we continue to break barriers in our community, I hope this is one we can break as well. I want you to understand that in our society, so many students are falling through the cracks because of a lack of a proper diagnosis, and saying things like this will not help our community moving forward.
So, the next time you think of possibly stereotyping autism in this way I hope you can think of the person instead of their race. Could autism be more prevalent in white children than others? Absolutely. However, take a minute to think about our community. Take a minute to think about the autism awareness we’re building right now. Don’t let this ignorance lead another to think the same way. Today, I know children with autism who are Caucasian, African-American, Asian, Hispanic, etc. With 1 in 68 children affected by autism, it hits all of us in someway.
Even if you were trying to make this student feel better, you also did a huge injustice to a community that, more than ever, wants to be accepted for who they are as individuals. Trying to scapegoat a tired stereotype to comfort the needs of a student shows why we need to always be acknowledging autism as a difference, not a deficiency.
I hope the next time a conversation like this comes up with a student, you can instead encourage them to learn the signs of autism and help them understand how wide the spectrum of actually is. We need people today to see autism as what it is, which is simply…
“People with autism should eat more strawberries.”
“Too much automotive exhaust is a leading cause of autism.”
“Chemicals found on non-stick cookware may trigger autism.”
The one about maternal bonding is sort of painful for me. The truth is, I did have a hard time bonding with infant Jack. The little guy shrieked and whined and cried for a solid year. He started sleeping through the night at 6 weeks and stopped at 3 months.
I was exhausted, and my husband, Joe, and I were fighting constantly — bickering and arguing and long screaming matches. For the first time, I could feel my marriage slipping away from me like sand through my fingers.
And my first child, Joey— sweet, uncomplicated, good-natured Joey — was a year old at the time. His easy nature only highlighted his new brother’s fussiness.
But I’m certain there is no one on Earth more bonded to this boy now, and guess what? He still has autism.
I am happy to announce that I do know what caused Jack’s autism, and without further ado, I’d like to tell you.
Wait for it.
It’s kind of a big deal.
Drum roll, please.
Jack has autism because, as his 5-year old brother Henry says, he was “bornd-ed” with it.
Yes, I believe autism is a genetic condition. I believe that somehow Joe’s DNA mixed up with my DNA, and together we had a child who thinks Wednesday is orange. Perhaps his unique genetic coding makes him more sensitive to things in our environment like lead and mercury and plastic.
I don’t know about the strawberry thing though.
(For years I blamed Joe’s side of the family for the autism gene. But a few years ago I went to a funeral for someone on my side of the family, and I looked around the room and was all like, hmm.)
I was in a coffee shop last week, and a woman came up and introduced herself to me. She said her daughter, Lily, is in Jack’s fifth grade class. I nodded and smiled, took my cup of coffee — OK, OK, and my cupcake —from the counter and turned to leave.
“Wait,” she touched my arm. “I just wanted to tell you something. Lily told me that a boy called Jack ‘weird’ the other day in class.”
I cringed. “Oh, well, yes. That happens.”
“Lily said she told the boy that Jack isn’t weird. She told him he’s exactly the way he’s supposed to be.”
You can see my dilemma. If I start running around declaring autism an epidemic and screeching about how we need to find out where it’s coming from and who started it and how to cure it, well, that sort of contradicts the whole message of acceptance and tolerance and open-mindedness.
This fragile glass house we’ve been working so hard to build over the past decade will explode into a thousand tiny pieces.
But on the other hand, it sort of is an epidemic. Other families are going to have babies and maybe they would like to have some idea of how to prevent this tricky spectrum disorder from striking. My own children will have their children, and if autism is indeed caused by automotive exhaust, it would be good to know so we could all buy electric cars.
At the same time, I don’t want to focus so much on the “what” and “when” and “where” and “how” that I forget about the “who.”
Because I don’t care where it came from.
But I am kind of curious.
It doesn’t matter to me why Jack has autism.
But it might be good information to have.
There’s nothing wrong with him.
Maybe there’s a little something wrong with him because he just spent the last 45 minutes talking about all the different kinds of gum that Wal-Mart sells.
I wouldn’t change a thing.
I might change a few things.
I celebrate autism and all of its spectacular wonder.
I hate autism because it makes my son talk about gum and Wal-Mart so much.
He is broken.
He is whole.
Autism is no one’s fault.
Maybe I should stop using Tupperware and make him eat strawberries even though he hates them and re-paint the house to make sure there’s no lead on the walls or the windowsills.
Maybe I should throw away our frying pan.
Maybe I should have loved him harder, deeper, more when he was a tiny swaddled baby squirming in my arms.
Maybe this is my fault.
As you can see, my feelings about Jack’s autism diagnosis are as complicated as a prism with a thousand colors and angles and light. Some days, my doubts are soft whispers within my heart, other times it’s as though someone is shouting in my ear.
I am not a scientist. I am not smart enough for that. But I am a mother. And although I am not really smart enough for that either, I do know autism from that angle. I know the rigidity and the obsessiveness and the rage over having an aide in school. I know the disappointment and the fear. I know the quiet longing that comes with being different or weird, because I see it every single day.
When you live with someone who has autism, you say the phrase for now a lot.
So, for now, I’m going to believe Jack’s autism is because of DNA and RNA and heredity.
For now, I will try to add broad splashes of green and blue and purple and orange to science’s black and white brush strokes. Together, we will fill in autism’s canvas until a clearer picture comes forward.
I don’t know exactly what that picture looks like yet, but I like to imagine it’s a utopia of sorts — the perfect intersection of science and people. There are strawberries and puppies and lots of peppermint gum in Wal-Mart (the kind in the blue container).
There are tall, blond girls named Lily and boys with glasses named Jack.
And if you look hard enough, you can see a glass house in the distance — almost on the horizon. It glints and sparkles in the sunlight, and it is breathtaking.
If you look closer, you will see a sentence etched into the front door. This one sentence — this collection of eight words — well, they are very, very big.
They are a shored wall against a flood of uncertainty.
They are a million bright stars in an otherwise long, dark night.
They are peace and forgiveness, power and pride. They are everlasting absolution.
The first time I heard them, I was in a coffee shop buying a cupcake.