Ten weeks ago I started a new adventure: a podcast. This podcasting world is still very new to me. I sometimes stumble when searching for the right words. I embrace technology and I also embrace simplicity; sometimes these two worlds collide without grace. And, getting comfortable in my closet, the only quiet place in my house, is a bit of a challenge still. Yet, I am hungry for more learning; more conversations; and more reflection. Why?
Shared experiences: Through my conversations with autism parents and individuals on the autism spectrum, my learning is that I am not alone. If anything, we collectively have more experiences that bring us together than those that divide us. Take my conversation with Catherine Hughes, the Chief Inspiration Officer of Caffeinated Advocate, for example. Much of her early parenting journey was molded by the cold stares and harsh judgments from people who didn’t even know her. In fact, her journey as an autism mother started when she was arrested because of a snap-judgment made about Catherine’s parenting during her son’s sensory meltdown. I am also aware of sensory meltdowns, and I have also lived in fear of what others will think of me when watching how I respond to and support my son when his world is overtaken by his surroundings. Am I worthy of this mothering gig?
Empathy is the only option: Yes, we are all uniquely different. We are beautiful and different snowflakes: no two are alike. When we assume that our children will respond and react the same way as another child, either with autism or not, then we are telling the world that listening to someone else’s perspective is no longer important. In essence, the question that I continue to hear throughout my conversations is this one: How can I help? This is the question that mothers with kids having a sensory meltdown want to hear from us, rather than steely stare and hushed talked to others. This is the same question that self-advocates want others to ask when we notice someone who is pacing in the grocery aisles because of feelings of overwhelm and frustration. And, this, is the question that our kids deserve to hear. Our kids need to hear that caring humans surround them and are also there to support their parents and friends and neighbors in times of need.
Let go of expectations around desired outcomes: I’ll be the first to raise my hand with a response to this statement. I truly hold so many expectations around my professional life, my fitness goals, my sleep patterns, how my kids SHOULD respond, and even my love life. And, you guessed it. The tighter we hold onto to our desired outcomes, then the more difficult it becomes to just respond in the moment; to be present; to listen to each other. As an autism mom, I know the expectations that I put onto myself and, yes, even my own kids because I am so committed to goals and how goals can help us realize our dreams when they bloom. I am also learning, and practicing more and more, that just because I’m armed with so much knowledge from my twenty-years serving in public education as both a teacher and a school administrator, doesn’t mean that I know what is best in every moment for my own kids. My guests on my podcast have certainly taught me this in more ways than I can even refer to right now.
So, thank you to each of you who has tuned into the Empathy, Joy & Autism podcast. Thank you to my guests who are my teachers of courage and empathy.
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Have the words, “I’m not doing enough,” or “I’m failing my kids,” ever crawled into your mind? Lately, these phrases seem to be sneaking in and surprising me, leaving me feeling a bit anxious about “what more” that I can give. Just recently, my family went into quarantine because of some positive COVID results. (And, yes, we are all recovered and doing okay). The three weeks inside our home working as an assistant principal from my laptop computer, taking temperatures and tracking O2 levels, and negotiating with my own children to engage in online learning were, undoubtedly, some of the most complex moments I’ve recently experienced.
The impact of this pandemic shook me in these recent weeks because I watched my son digress rock his body back-and-forth not just during his online learning, but during our discombobulated dinner time and before falling asleep at night. There were days when my son relearned how to find the right temperature with the shower faucet. And when our online shopping order brought a different brand of chicken nuggets, there was a period of five days when the only thing that was consumed was taco shells with refried beans and bowls of oatmeal. His bi-weekly ABA in-home therapy and center programs extinguished leaving me to fill in the necessary gaps with social skills and idioms.
Please hear me, I do consider my family fortunate because our COVID symptoms made a known presence for about 10 days. We experienced fevers, root-pulling fatigue, sharp body aches, and bouts of nausea. Our nights consisted of my son waking-up numerous nights around 2 AM because his over-the-counter ibuprofen wore off and the only thing he could feel was his body screaming. He told me things like, “Mom, my body has a headache.” and “I can’t feel my legs right now.” And when his fever dropped just ever so slightly, Buddy would find any stored energy to zip through the house, playing and laughing just like normal. However, before long, all his energy was zapped, and he would crawl onto the couch for a nap (something I haven’t seen him do since he was 3 years old). Moments like this prompted me to wonder if my kids were drinking enough fluids and if was I doing enough?
And when my daughter started to doze off in her virtual classes and also ask for a break from school so she could take a nap, I finally realized something had to give for the time being: my job. So, we watched loads of movies and cooking shows. We tried new recipes and then took naps wherever the fatigue took over. Many days, my son snoozed with his beloved Aussie dog on her bed in the middle of our family room. My daughter enjoyed more of the comfort of the couch and snuggly blankets with her three drinks within close reach. There were also new life skills developing: Buddy quickly learned how to monitor his O2 levels and his temperature – and proceeded to check both Sissy and my vitals whenever he could. I watched my son as he learned to take care of himself as witnessed in his comments such as, “I need more to drink because my body is weak right now, ” and “I haven’t had my Vitamin C today, Mom,” nudging me as a reminder. And on these days, I secretly wished my kids could just find a book and read all day. What had I not done to invest in their love of reading?
Somewhere between days 9 and 14, all existing house rules were suddenly null-and-void. Either it was the complete fatigue consuming my body or the sheer-lack of not knowing what to do anymore, that the words, “Yes, you can ride your scooter in the house,” came from my mouth. Suddenly Sissy and Buddy glided from one room to another, giggling because they knew they had “won over” their mom. And after those words came from my mouth, other strange things started to get “mom-approved.” For whatever reason, I confirmed to my kids that they could use the permanent markers on shirts of their choice. My son, being the neat and tidy kid that he is, found his bleach-white polo shirt for this new project. My daughter picked out her favorite pink, sparkly shirt for this creative endeavor. They both created lines and rainbows and doodles on their shirts during one of my Zoom meetings. After wondering why the house sat in silence, I turned off my video and muted myself (because, yes, Zoom allows us to gracefully exit like that) my meeting to find both of my kids quietly creating masterpieces (on cardboard – thank goodness) with permanent markers on the floor. In moments such as these, words such as, “I’ve had enough. I can’t anymore,” trickled through me.
Reminding myself – and you – that it is okay to take a break. It’s okay to bend your rules sometimes to allow for the flood of change happening in our world not to envelop you. I believe that while I want so much to be doing more: more 1:1 time with online learning, more silent reading before bedtime, more dedicated time for creativity in our makeshift makerspace in the garage. When so much of the world we live in today is about shifting and pivoting, I believe we are doing enough. I believe, most days, that I am doing enough. However, I’m a mom and I’m human and there are times when it nice to be reminded that, “yes, I am enough.” And, so are you.
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?
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?
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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