Just a few weeks ago my son asked me about autism. This question didn’t surprise me, make me wiggle inside, or even make me pause (for too long that is). The simple question, “Mom, I think I have autism, right?” started the whirling, swirling, beautiful 50-second conversation between Buddy and me.
“Yes, Buddy, you are you and autism is part of you, but it isn’t all of you.” I received a confused look from my 10-years young boy who clearly needed a different kind of answer to his question.
“Autism is a superpower,” I started. “It is your gift to the world. It is how you build things in your mind and then re-create them with your legos or a cardboard box. It is the puzzle that takes me three weeks to complete, yet invites you to finish in three hours. Your superpower is solving a math problem that seems too complex. It is how you focus on something so intently, even for hours, that you eventually become a master at it. It is the way you make sense of the world when you move and make your awesome sounds. It is the superpower that I don’t have.”
“Okay, Mom. Why do I have this superpower? Does Sissy have this same power?” asked a curious voice.
“Buddy, your superpower is unique, different than Sissy’s powers. Sissy is gifted in creating colorful masterpieces with her paints and doodle pens. She knows how to craft small lunchboxes and paint-pallets for her favorite doll, Mary Ellen. Sissy knows how to put ingredients into a pot and season them so they taste yummy. She dances and sings because it makes her feel happy inside.”
“Hum,” came a sound from my son’s buzzing mind through his mouth. “Thanks, Mom. I’m ready to play my game, again,” said a matter-of-fact voice. And just like that, Buddy shifted his thinking into the puzzle game on his device, moving pieces and rotating angles with his fingers.
I believe in this moment my son grew into himself just a little more. He took a big, confident step into recognizing that he is unique just like his sister is unique. He found a moment to hear that autism spectrum disorder is actually pretty cool, and that he’s capacity in the world is greater than he ever conjured by himself. Buddy noticed that life isn’t about what makes us different from others; rather, what makes each of us unique and special to the world.
I understand that my son’s perspective of the world is based on his 10-years of life, hundreds of hours of therapy, and many moments that probably felt chaotic in his small body. I also know that there is nothing extraordinary about perceving unique abilities as superpowers. I ask that you think about your own superpower – and then the superpower that your child or loved one offers the world. I ask that you look at these powers as what makes the person whole, rather than what they are lacking in life. Because when we do this, we are creating a world where all abilities are honored and valued.
And, you ask what my superpower is? Well, I believe my superpower is listening even when no one else will. My power is in the advocacy for the autism community that continues to grow despite others telling me otherwise. It is in the song, “Seasons of Love,” I sing at night to my daughter every night because it helps her to find sleep. My superpower is in the good-morning bowl of oatmeal that Buddy enjoys each day. My superpower is the part of me that no one else can feel.
So, what is your superpower?
To write about how my life is a thread of calm and serenity would be a lie right now. Even though I continue to practice meditation, deep breathing, healthy eating, good sleep habits, and the like – I am still flooded by instability that currently surrounds life as I know it. Like many around our country, I keep waiting for the moment when our lives shift back into what we know to be normal. I yearn for the comfort of knowing that my kids will grow up in a world surrounded by their friends, playing freely, and letting curiosity drive them. I grieve the tender asides of helping my daughter pick-out her school outfits in the evenings. I even miss the Sunday afternoons spent in coffee shops where I would devote hours to writing to this very blog. However, the thing I miss the most is coming home. Just knowing that my home is my place of being, of peace, of joy. My home.
I’m not sure I realized how deeply I appreciated the caveats of life until my daughter ran away from home last week. Now, before you gasp or decide to stop reading, please take a pause and read a bit more. My daughter, Sissy, packed-up her Elsa & Ana suitcase, filled with candied almonds, lollipops, coloring books, and the contents of an entire dresser drawer. She found her white sunglasses and a long scarf, tie-died and stamped with white peace symbols, and draped it around her shoulders. Opening the back door to our patio, she swiftly pulled her small suitcase across the patio and into the lawn that stretched to her playhouse.
Yes, my daughter knew no other place to run than her playhouse.
So, yes, take a breath and recognize that my 7-years young daughter didn’t actually leave through the front door. Instead, she sought comfort in her playhouse – because her home was so much more than a home in the past six months. She ran away to her playhouse to get away from the constant noise that surrounds our home during ABA therapy for her brother, zoom meetings that she eagerly anticipates ending, and endless, boring minutes of TV time. She ran away to a place that was just for her: her rules and her definitions of life. She left the insecurity not knowing when her mommy-daughter time would be honored for painting mermaid toenails. And she screamed and cried and cut up small pieces of paper with dull scissors because she knew no other way to express those emotions inside.
In this grueling moment, I let the the deep impact of the novel Coronavirus sink into my pores.
With my own mother on the phone with me, coaching me through what felt like the end of my parenting path, I listened to the only advice I had at the moment: help her move out. Yes, that is right. My mother nudged me to get Sissy a bottle of water and a granola bar in case she gets hungry or thirsty. So I did. She encouraged me to find a blanket and coat in case the cold nipped at her tiny toes. And I did. She gave me all the advice I needed to help my daughter move out. She advised me from her years of motherhood that, “this too shall pass, Amanda.”
In those moments, I helped my daughter move out of our home and into her playhouse in our back yard. She asked me for cans of green beans and boxes of Ritz crackers. And I found them and brought them to her. When she realized, and thankfully so, that eating with her fingers wasn’t really her style, she came back into the house for a fork and knife. Her brother, Buddy, watched as I supported his sister with love through her moving out session. And so, he also started to help. Suddenly, I heard things such as, “Hey, Sister, do you think you’ll want some music? You can borrow my iPod if you want.” And, “if I were you, I would also bring an umbrella and your raincoat because the clouds in the sky look pretty stormy.”
It was here, at this moment, that I found my seat on the patio and observed. I watched the love between Buddy and Sissy evolve as Buddy helped his Sister to prepare for life on her own. I listened to the exchange of words between my two children who pooled together allowance coins and dollars in the event Sister needed money. And, I listened to my own mother who reminded me that my next task would be to move my daughter back into our home. While this all unfolded, I allowed the dying branch, filled with emotions, break from this gust of wind. I felt the anger and the fear that seeped into my bones these past six months. I cried deep into my lungs the very existence and now extinguishment of what I know to be true.
And after my good, healthy weeping session, a small hand touched mine. “Mommy, I’m ready to move back in,” said a small, tender voice. And with a smile and a jolt of excitement, I walked to the playhouse and began to pack-up so Sissy could move back home. We all carted in pillows and blankets; canned food and water bottles. We created a sort of assembly line from the playhouse to our home, carefully moving items back to their rightful place. And, before our 8:30 PM bedtime story, Sissy was back inside snuggling into the creases of my shoulder.
I share this very personal experience with you because it helped me to recognize the depth in which my daughter, and maybe a child or teen you know, is coping in today’s world. I truly understand the slight charm and fondness of running away to a playhouse; however, I also know that my daughter is 7 and this is all she knows about “running away.” Given that my daughter was 15 years of age, I have little doubt in my mind that the front door would have opened – and not the back door. So, while it may seem that our children are reacting to small things in life, it is vital to understand that these reactions are real and carry great weight. If your child or teen is in crisis, please don’t judge yourself or them. Instead, tap into these resources:
Youth Crisis Hotline 1-800-448-4663
Teen Hope Line 1-800-394-HOPE
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Have you ever been in a conversation where you don’t feel heard or valued? A conversation where you put your heart on a velvet pillow and then the listener comes back with, um, a self-centered or “I’m so sorry,” response? The kind of response where you leave the conversation wondering what just happened and why or how it shifted away from your story to something completely different.
Here is a scenario: Let’s imagine you work hard every day at your job and there is finally an opportunity for a promotion. So, of course, you interview for the position because you deeply believe you are a qualified candidate. And, then, you receive the phone call that you’re not the person for the job. Suddenly, you are embarrassed and you doubt your (amazing!) abilities at work. Anything like this ever happened to you?
Now, let’s imagine you are sharing this story with your friend or loved one. You say something like, “I can’t believe I didn’t get the job. I am stuck in this position forever. I work so hard and no one sees it!” And then you hear one of these responses from your friend or loved one (the listener):
- The I Can Do It Better response: “Oh, come on! That is nothing! Before I landed this job, I had to interview about 12 times and I was in my third trimester of pregnancy.”
- The Advice Columnist response: “You know what you should do is …”
- The I Feel Sorry for You Response: “OMG! I’m so, so sorry to hear this! I just want to cry for you!”
- The Girl, You Have NO Idea! response: “Look on the bright side, at least YOU have a job. I’ve been jobless for 6 months now and my dog just … “
- The Eye for an Eye Response: “Those [insert profanity], let’s scour them on social media right now.”
- The Supreme Court Response: “You are just not prepared for this position. I’m sure I can help you through this.”
For me, these statements would be completely meaningless to me – and some even hurtful. In fact, I would question whether the listener even heard what I shared with them. I would wonder if they even cared. And, I would likely retreat into myself, trying desperately to process not only my interaction with the listener but also my experience with the job interview. Instead, what I’d rather hear is something like this:
“Amanda, I hear that you are extremely disappointed with not getting this job. If you are comfortable, I would love to hear more. …”
Right there … that is what opens my mind and my heart to the listener. This also helps me to build trust with them because I know that I’m in a safe place and there will be no judgment, no advice, no stories that are better than mine, etc. This is where the magic of empathy begins to take place.
Now, I want you to feel this same experience as it applies to your child on the autism spectrum. Think about the moments when your child is stuck in a sensory meltdown, the world whirling around him and the sensation of a scratch on the finger overwhelming all thoughts. Or the moments when the chicken nuggets and apple slices just all tastes “horrible” and he is hungry, but he can’t verbalize what it is he wants to eat for dinner because he is so overwhelmed with the horrible taste of the chicken nuggets and apple slices.
So much of parenting a child on the autism spectrum is about being an empathic witness. The term sounds a bit more complex then it really is. I like to think of this badge of honor as the person who hears your story with love and understanding. This is very different than being a compassionate witness, someone who gives sympathy or pity to your journey as a human.
It is about responding with love, even when you don’t totally understand. Being an empathic witness is when your child is hurt and upset and confused about the new routine. Listening with empathy is putting aside the judgment and allowing your child’s story and feelings to just flow and spill to the floor. It is hearing the cries and holding your child’s hand when he feels the hurt of someone’s words. It is saying to your child, “I hear you are sad (angry, upset, confused). I’m here to listen to you right now.”
I also like to think about an empathic witness as the person who holds sacred a moment on my journey – and listens to and tries to understand my perspective. In a moment of complete despair or confusion, I want to be heard. And, in these moments, I firmly believe our children on the autism spectrum need us, the parents and the care partners, to be empathic witnesses to their journeys.
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Motherhood is like carrying a paddleboard up the long ramp along the side of a hill with an impatient passerby trying to squeeze next to you. It is the cold earl-gray latte that never received a sip because of the water-hose crisis in the backyard. Motherhood is the one-glass-of-wine night because anything more might push you into a drunken state of oblivion. Motherhood is finding the giggle-button moments hidden between the melted popsicle on the kitchen floor and the empty bird feeders. It is the ultimate balancing act of doctor appointments on the left shoulder, making morning oatmeal on the right shoulder, lifting sad spirts because social distancing is just hard on the right tippy-toe, and taking oh-so-deep breathes just as you tighten your core.
A decade ago I would have sighed, thinking my life was on pause because it was impossible to have it all. I would have told myself that good mothers were awake before her children, preparing breakfast and packing lunch boxes for the day ahead. I told myself that it was okay to skip the workout because my kids needed the nighttime story and kiss goodnight. I also convinced my heart and soul that if I didn’t live up to some of these standards that my kids would see through me – and they would see that I was ill-equipped for this role of motherhood.
These beliefs are difficult to shake, especially when you know you are the stabilizing force in your children’s lives. It is painful to imagine life without you for your children. And, I write these words with great meaning because this is truly a belief system that guides my day-to-day.
And like the wind shifts the water’s movement on a lake, I opened myself to a new way of living. Autism Motherhood is about pulling out those favorite heels and pairing them with your favorite pair of jeans. Autism Motherhood is driving two-hours into the mountains with girlfriends to find laughter, respite, wine-drinking, and late nights watching the moon chase the water. It is also about telling my children that I am passionate about helping others, the written word, the soul of country music, and the steady reminder of the rocky mountains. Autism Motherhood is showing my children that I am me – a strong, confident woman who not only uses an electric drill to install shelves but also listens and cries with the very best. The true definition of motherhood is neither complex nor complete. Instead, it is a series of moments and mistakes and reminders about staying true to yourself. It is about learning big lessons in life from your greatest teachers, your children, about empathy, patience, and forgiveness.
And, hot damn, Autism Motherhood is totally rocking your job via Zoom meetings and phone calls at home while your kids decorate your head with hats in front of your boss. It is prepping lunch and making sure the supplements are still served all while still being a voice at the table with colleagues. It isn’t about apologizing for the noise in the background, rather it is saying, “my time is valuable so let’s get to work.” Motherhood.
So, the next time someone says your life is so crazy and chaotic, your response, fierce women, is, “it is a beautiful life and I wouldn’t change a thing.” Your response is my greatest gifts in life are not only my children but also my passion for listening to the trickle of water and helping others to find empathy, not sympathy, in autism. Your response, and mine, is yes, I am a dynamite mother because of the women inside of me.
Do you find this valuable? Do you know someone who might also enjoy this? Please share so we can collaboratively create a more empathic understanding of autism.
It’s been 35 days. I’m officially a master at Zoom meetings and Google Hangouts. No longer do I reserve carry-out for special nights. Movie night, a once sacred family occasion, is now commonplace after dinner each night. Strange, yet, beautiful things have occurred during the outbreak of COVID-19. My 7-year old daughter decided to dye her hair delicate blonde hair a fuchsia color for her birthday present to herself. The iridescent color, refusing to fade, is my daily reminder that 7-years young is really a toe into the 17-year old pool of the future. My significant other is now obsessed with the squirrels that continue to raid the bird feeders. Many failed missions to prevent the squirrels from feasting are photographed in our minds. And, my son, Buddy, still rises at 6:00 AM each day, eats his bowl of oatmeal with brown sugar, and sits in his same spot at our kitchen table for online learning.
During this shut-down, we have built bird feeders, spray painted the pots outside, racked leaves, created bath bombs with baking soda and citric acid, and made teeny-tiny books for the hands of Sissy’s dolls. There have been meltdowns, too. Not just a scream and a cry. No, these meltdowns consist of screeching and yelling and slamming doors. These meltdowns occur the minute I try to teach my daughter how to read and write in my own way or show my son how to navigate through his Google classroom.
And, I also want to have a meltdown. I also want to throw myself on the floor and scream, “Enough, I’ve had enough!” I want to cry because tomorrow looks the same as today and the week before. I want to run, run so fast that my legs can’t keep up with my mind anymore, and I can only feel the rhythm of my shoes on the pavement. I also want to have a catastrophic meltdown.
Maybe it would have been better for my family if I did have an epic, off-the-charts meltdown. It would be over. Done. Finished. Instead, I chose to show my frustration in the small moments each day.
A heavy sigh to signal my angst over the kitchen table is covered with glitter and glue from the day’s learning.
A frenzied yell to my children, “I need 5 minutes, please. Five minutes without any talking!”
A tense eyebrow looking at my jam-packed calendar that once existed in my real-world day, now compacted into Zoom meetings in the very discomfort of my home.
My exhausted brain at the end of an 11-hour day (at home, mind you) and trying to consider what to conjure up in the kitchen for the third official meal of the day (not including the 23 other unofficial snack fests that occurred).
I chose to truck through each day, committing myself to a hectic schedule to meet the needs of everyone in my household. I created a master calendar, hosting and cataloging all of the occupational therapy, speech-language therapy, reading interventions, child psychologist and morning-meetings-with-teachers meetings. And then I worked my schedule into my children’s very tight, non-negotiable day. I weaved my own morning meetings during the breaks between reading and the daily math problem. I muted meetings and listened while I watched markers bang against the table in pure frustration from Buddy. I interviewed candidates for teaching positions on Zoom while Buddy and Sissy built forts out of blankets and pillows just to the left of my computer screen. I hugged my son and let him cry, cry, and cry when he didn’t understand why his math looked and felt so different, why his daily schedule disappeared into the dust, and how to be in this new world of ours.
And in the chaos of these 35 days, I remembered my own words – I’m in control of my actions. This is something I share with kids almost every day. You are the creator of your world – the dreamer of your destiny …
So, now I am making a shift.
I now choose to have grace with myself. After 35 days of giving grace to everyone around me, it is time for me to have some breathing room. It is okay if I don’t make the last-minute Zoom lunch meeting. Why? Because this is the time I’ve built into my day for my family. It’s okay if I can’t contribute like I normally do in my board and committee meetings because I am doing the best I can right now.
I now choose to build play-time into my day. If there is only one thing I’ve learned during our country’s shutdown, it is the importance of play-time. I’m talking about the scooter races in the street, playing hide-n-seek in the middle of the day, jumping on trampolines, and going on scavenger hunts in the neighborhood. I’m talking about fun!
Of course, I also choose, really, seriously choose, to control my actions. There is nothing in this world I can control. However, I can continue to harness my response to the stress, the meltdowns, the anxiety, and the complete sense of being uprooted in life. I can tell my children that I’m feeling really frustrated and that I need to take a break and go for a walk. I can choose to say, ” I am sad today,” and then go find the paintbrush and watercolors to release it. I can choose to show my children how to live in this moment – this complex, uprooting time.
In a way, I’m grateful for all of the meltdown moments. These moments – along with Buddy and Sissy’s’ moments – continue to teach me about the threads of love in my family: grace, play, and openness with each other. For me, this matters more than the clean kitchen table, being in every Zoom appointment and meeting, and also pulling off the whole mom-thing. What matters is how we are living each day.
In the middle of the week, on a typical school morning, a small surprise awaited me outside: snow. Small hills cascaded over the birdbath and tree stump in our backyard. Our street, normally separating us from the neighbors, was now covered in a thick, marshmallow-like pillow. My first instinct: catch up on some reports, return those lingering emails, and market my new book. And, try I did. I pulled out my laptop during those morning cartoons, pounded away on my laptop keys, trying to get ahead so I could get more things done. Somewhere between the typing of an email the jotting of my to-do list, my kiddos’ giggles distracted me from the seriousness of it all.
It all started when Buddy announced, “I’m going outside! Now, where are my snow pants, Mom?”
Putting aside my laptop, I sat at the table and talked my son through the steps of getting the snow pants from the hall closet, the gloves from the wooden hutch, and the hat stuffed in the bottom of his backpack. I directed and coordinated these efforts from my chair with every expectation that I’d find some respite once my son trudged outside into the snow. And when I heard him say, “Okay, Aussie dog, let’s go play!” I opened my laptop and drilled myself back into my world of adulting.
A few emails into my so-called day of catch-up, I heard a voice from outside: a loud, bolstering laugh. The laugh was raw with joy. The laugh was something outside of the typical giggle that bops around the hardwood floors of our home. And at that moment my computer started to show me the spinning circle – the one that tells you that you’re working harder than your computer. So, I took that moment as my sign from the snow universe that I needed to see what all the laughter was about.
To my pure delight, I looked out the backdoor window and saw Buddy and Aussie dog throwing snow into the air – hands and paws. I heard the stillness of the snow in the backyard and saw the sparkle in Aussie dog’s eyes. The snow flew into the air with Buddy’s hands and then fell down like confetti catching a small breeze. Aussie dog opened her mouth and pounced into the air – grabbing what she could of those small snowflakes. And then I saw Sissy, fulling dressed in her purple snow pants, leopard winter coat, snowshoes on the wrong feet, and a turquoise bow in her hair. She waved her arms and legs into the snow, creating nothing less than a small-bodied snow-angel.
That moment told me to let go of being an adult. I shouted to my children, playing in those gleeful moments of a snow-day, and said, “Let’s go sledding!” …
… And we discovered the sledding hill by the creek. Our sleds lined up at the peak of the small mound, and one-by-one we each zipped and zoomed down the hill. Then after so many runs, we decided it was time to build a ramp – something our sleds could jump on and then catch some air. As a mom, I don’t recall ever building a ramp for sledding. In fact, this historically was something my son always crafted while I supervised. However, on this day, Buddy showed me how to pack the snow in a way that created smooth edges. The smoother the edges – the quicker the lift into the air.
“Okay, Sissy,” my son hollered up the small mound. “You need to get a running start! You can do it!” He chimed. His confidence beamed. His spirit soared. And then he cheered Sissy on as she took flight on the ramp of packed snow, leaping into the air and landing with her sled in a perfect twirl at the base.
And then it was my turn. Buddy showed me how to sit on the sled and how to move my body to guide the sled down the hill. He and Sissy counted, “1, 2, and 3,” and then they both pushed me from the crest of the hill. With the snow still sprinkling from the cloudy sky and the perfectly pathed sled ramp, I also took flight when I hit the ramp, landing with a soft thump into the powder. I rolled off the sled and squealed, “that was so much fun!” And then my kids bulldozed me with snowballs and nose-to-nose kisses. At this moment, I was my inner child, feeling the pure delight of the moment. I didn’t have an age, or a job, or a list to complete. My only mission was to experience fun.
Our day continued with more snow-ramps and treks into enchanted forests with magical icicles. We threw snowballs at the frozen creek, delighting in how the snow splattered on the hard ice. We romped around the snow with Aussie dog, touching our noses to the snow just like she does. Buddy and I engaged in a snowman building contest with Sissy took careful note of craft. The official winner – both of us!
So, on this day, I truly remembered how to play. And, as I write this, I look back and I remember the feeling from that snow day. I remember the joy that filled me up and the child that leaped out of me on that sled ride. I remember the confidence exuded by Buddy and the happy giggles from my daughter. On this day, I remembered how to play.