words can cut

words can cut

When I heard the words, “is it okay if I act like an autistic and screech at you?”, a sharp pain heaved inside my body. The words came out of the person’s mouth so easily, effortlessly, as if the language used were commonplace. My mind swirled into the moments when my own son recently worked with his ABA therapist and shared that he screeched at others when he felt stressed or scared. In a very vulnerable moment, my son, Buddy, shared with me how he likes to make a noise like a pterodactyl because he doesn’t know how to express his stress at the moment. Instead, he envelopes himself into the high-pitched screech that signals to me and his loved ones, that something isn’t right in life. He sometimes raises his arms up in the air and then flaps them up-and-down, repeatedly, as if he were a pterodactyl flying through the sky. I know in this moment that my cue is to turn down the noise in the house, dim the lights, and diffuse some vetiver oil into the room. I also know this is my moment to listen to his screech because it is his moment of stress. His stress, like mine, can sometimes consume my behaviors because it owns my thinking. And while I don’t make noises, I do, in fact, eat chocolate, isolate from my family, and even cry. Neither response is correct or right; however, both are responses to stress.

The words “is it okay if I act like an autistic and screech at you?”, prompted an abrupt, yet simple response: “Excuse me, do you know what you just said? Do you know how hurtful those words are?” After I received no response from this individual, I realized that my tone of voice wasn’t compassionate or calm. Instead, it was sharp and defensive. I dropped all my previous training and work in the education field in these few seconds. Yet, how can I expect a response from someone when I am only bouncing the ball back with the same judgment?

So, after a few days of reflection, I now believe my response would have been better received if I put aside my emotional connection to my son and focused more on empathy. Perhaps this individual would have received my perspective better if I shared why some individuals on the autism spectrum screech. Or maybe there could have been a conversation with an invitation to explore autism. Or maybe I would have come to understand this person was also victimized by hurtful words – and was only putting more back out into our world.

What does matter is that there is still great work to be done with creating more empathy around autism spectrum disorder. I invite you to say something the next time you hear a joke about a person with unique abilities. I ask you to say something not only because you may impact the viewpoint of the speaker, but you may inspire an onlooker to do the same. And, while the words I heard still rattle like a sharp needle in my brain, I do know that I can do better. We can all do better. And, our world, our children, deserve to see this kind of better – the kindness and empathy tucked into the small moments.

Can you join me?

running away

running away

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:

Teenline 1-888-747-TEEN

Youth Crisis Hotline 1-800-448-4663

Teen Hope Line 1-800-394-HOPE

Do you find this valuable? Do you know someone who might also benefit from reading this? Then please share away.

empathic witness

empathic witness

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.

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.

finding me in motherhood

finding me in motherhood

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.

autism & choosing love over the things

autism & choosing love over the things

Just a few days ago our family experienced “a day” or “one of those days.” It might be the never-ending summer, businesses opening and then closing, again, or the general anxiety of COVID-19. However, as a mom I believe our day was attributed to the in-and-out of the car, ABA therapy, errands to the pet store and gas station, finding new shoes for my very opinionated 7-years young daughter, and helping my mom to sort through memorabilia in preparation for a down-sizing move. When I look at this day, there is a lot of things to do – and very little joy. There are lots of things to attend to – and no time for play. And, honestly, I wasn’t unhappy or dissatisfied on this day. Yet, on this day, I learned a little bit more about love and compassion.

Between looking at the clock and timing my attempt to go into the pet store while leaving a popsicle in the car and dashing to the ABA therapy location so I wasn’t “that” parent that showed up a few minutes after pick-up,” I now know that I didn’t take enough time to pause. To breathe. To recognize that, “s*it, this day is over-the-top busy and I’m exhausted!” Instead, allowed my energy and emotions to control the outcomes of my day. And, that they did.

So, here it is. After all of the errands and running to-and-from appointments, my daughter sat at the piano bench at my mom’s house on the hill. She oohed and ahhed over the small treasures that her Grammie no longer wanted – and was generously giving to her. Her eyes bubbled with excitement when she saw the vintage 1960’s Barbie music box. The perfect porcelain figure wore a long royal blue dress and white gloves that touched the elbows. A satin, royal blue cape draped over the figure’s shoulders and tickled her neck with a snowy fur. Alas, the best part of the porcelain Barbie figure, was her hair, according to Sissy. Her hair, blonde and long, swirled perfectly to the right side of her head into a small bun. I watched as my daughter caressed the hair on the figure and announced, “She is so beautiful, Grammie! I love her! I really do love her.” And with that giggle of pleasure, my daughter and her Grammie carefully wrapped the porcelain figure (along with a teacup, saucer plate, cookie platter and ceramic chickens) in paper and placed it securely in a box with the other treasures being sent home with us.

Then we piled into my car, placing the box of porcelain and treasures in the back of my SUV. We turned on the radio and just listened to the music while we drove away from Grammie’s home in pursuit of our final destination – my son’s ABA therapy appointment. During this drive Sissy said, “Mom, where can I put my new doll?” and “Can we hang a special shelf for her somewhere?” and “I want to listen to her tonight when I go to sleep.” I smiled to my daughter through my driver’s side window. She returned the smile with a wink – an affirmative for, “Yes!.”

And our trek continued. … We picked-up Buddy from his ABA therapy, we snail-crawled through traffic to get to the west-end of town where we lived, and we listened to Pirates of the Caribbean’s My Name is Barbossa musical composition not just once, but thrice. And then, at last, we pulled into our driveway.

Before the engine turned off, doors flew open as if we were arriving to our final destination spot after a 12-hour drive. I popped the hatch of my car knowing I needed to haul in a box of treasures into our home. And then I heard it …

a pile-up of fragility

scattered on our front drive

pieces and shards of glass everywhere

“Oh, Sissy,” I declared as I looked at the pile of broken treasures on our driveway. “I’m so sorry that your treasures are broken!”

“It’s okay, Mom,” she said with calm confidence.

“No, really, it is okay to be a little upset because I know how much you liked the doll with the blue cape. She made you smile.” I said.

“It’s okay, Mom, really. It is just a thing. All of these are things.”

“Oh, Sissy, I love your heart! Thank you for being so understanding.” I responded.

Buddy interjected with a broom and dustpan, announcing to the entire neighborhood that we needed to STEP. AWAY. FROM. THE. GLASS. And, we did just that. Buddy carefully swept all the pieces into his dust pan and then let them fall into a plastic bag, making clanging and clashing sounds.

“Hey, Mom! Look, this one survived!” pointed Buddy to a small teacup and saucer set that had somehow rolled onto the grass parallel to the driveway. The delicate white porcelain held painted lilies on it. The cup itself was no larger than a tangerine – the perfect proportion for my daughter’s young hands.

“Sissy – look! You still have something from Grammie’s treasure collection! Look – the teacup and saucer survived!” I proclaimed.

She gently, and protectively, held the small cup and saucer in her hands and walked into our home. She smiled at the small set and started to talk about her doll, Mary Ellen, who now wanted some blueberry tea with a spoonful of sugar. She announced that Mary Ellen needed to change her clothes into something more comfy – because having tea is relaxing she implied. Then, as she placed the cup and saucer on the counter, Buddy rolled into the room with his pirate-ship and crocodile.

And, then, another crash.

Now, looking at the floor, the three of us remained speechless for a few seconds. Five-hundred-and-two thoughts ran through my head: it wasn’t meant to be, all things happen for a reason, there are more treasures to be found, I hope she isn’t too upset, and on. … During my few seconds of processing time, Sissy noticed a subtle shift in her brother’s behavior. Suddenly, his head drooped down and chin touched his collar bone. Boogerd sniffles snarled through his nose and then tears started to crawl down his face. And before I could respond to my child’s sadness, my daughter stepped to her brother and wrapped her arms around his body. She spoke soothing words, “It’s okay Buddy. I’m not mad. It’s just a thing. Things can always go away. It’s okay. It’s okay Buddy.”

In this moment, I could only hug both of my children who also embraced each other. I relished in the compassion my daughter showed for toward her brother. I delighted in knowing that she chose love over a thing. I leaped for joy inside because she understood life.

I share this story with you because so often our neurotypical children stand tall and strong without us recognizing it. Sissy is compassionate beyond her years and I attribute this to her heart – and her brother who has taught her the art of patience.

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.

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