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.
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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At first, my walks outside with Aussie dog consisted of me and, of course, Aussie. She walked steadily at my heel, carrying her rainbow llama stuffy in her mouth. We strolled to the block where the green patch of grass spread long, like a narrow runway carpet. Zipping in between the trees, Aussie walked, carrying her rainbow stuffy, and stopping only when she found the perfect place. And as if the stuffy no longer existed, she dropped it from her mouth and started the tedious task of sniffing. She sniffed and scratched and burrowed her nose until she found it: her potty spot.
This potty walk often took twenty minutes. I learned to love these walks because they brought me moments of respite from what felt like blaring sirens inside the tiny walls of my condo. These potty walks occurred at 4:45 AM when the wiggles could no longer be contained. These potty walks dipped into my regular dish-washing time at 7:30 PM. These potty walks took my routine and harnessed new energy into my days.
And then one day, after another normal evening walk, I walked down the long hallway back to my condo to hear screaming. The cries pulled the roots of my hair because the cries sound like my children, Buddy and Sissy. Aussie’s ears also perked up and her stride quickened because her new love for my children told her something wasn’t okay.
Turning the corner of the long hallway, my children stood in the hallway with our neighbors, who did what they could to calm the heightened cries. Looking at me, Buddy screamed, “you and Aussie left me! I feel sacred!” Locking eyes with mine, Sissy blared, “I’m scared, too, Mommy. Buddy scared me when he cried.”
I breathe in deeply.
I exhale long and completely.
The neighbor turns to me, smiling and then winking an eye at me as if saying, “I know and I get it.” And with a gentle touch to the shoulder, the neighbor turns to my children, offers a gentle smile and says, “See, everything is okay.” Then I sigh. I smile. I hug my kids. I reassure them that everything is okay. And then our nightly routine begins.
And the next night, when Aussie’s potty walk ensued with her wiggly-butt and nose-nudging in my knee, I begin to dress her with her harness and leash. And, like every night prior, I said to my kids, “Aussie and I are going out for our walk.” But on this night, both my kids ran to me and cried, “no, don’t leave us alone, Mommy!” And without any question, both kids bundle into their snow boots and winter coats.
When the elevator hits the ground floor, I hear the quintessential pterodactyl screech from Buddy, initiating a loud rebuttal from Sissy, “stop making so much noise!” Aussie softly looks to Buddy, knowing she needs to calm him, yet not knowing how with a leash tethered to me and him running 10 feet ahead of us. I’m sure I also heard a deep breath in and long exhale from Aussie that night.
The walk continued with Sissy singing a song about unicorns in the sunshine and also dancing a ballet-like dance on the narrow strip of sidewalk. Buddy tromped along, heavy footsteps, angry and sulky like. The intermittent exchanges between Buddy and Sissy consisted of screams, tongues sticking out, finger poking, and even raspberry blowing from lips. Our Aussie dog continued to hold her rainbow llama in her mouth, steady in her walk and purposeful in her search for the perfect spot. And for me, my routine potty walks that inspired new energy into my days was now injected with thick tension.
And the walk ended.
I breathed in deeply.
I exhaled long and completely.
On the second night of our potty walk, I set a new rule. “Okay, kiddos, tonight we will practice meditation walking.” Two sets of eyes looked back at me with questioning and confusion. “Mom,” I can’t be still if you also want me to walk said, my wise daughter. “Yeah, Mom,” interjected Buddy. “How are we supposed to be still? You know the way you are still in the mornings on your yellow chair?”
I giggle inside. I know what I am saying does sound crazy. I also know that Aussie and I have to find peace in our walks, again.
“Let’s try it anyway,” I respond. As I explain how tonight’s walk will be different from the night before, I suddenly hear my daughter asking, “Mom, what if I have a question on the walk? What if I need to go potty, too? What if I need to sing a song?”
I giggle inside, again.
“Sissy, then you wouldn’t be on a meditation walk, would you?” I say.
We pile into our elevator and wait for it to hit the ground floor. I hear the quintessential pterodactyl screech from Buddy, initiating the usual loud rebuttal from Sissy. “Remember, our meditation walk begins as soon as we walk outside. So, get out all of your questions now.”
I wait. No questions.
We walk. Aussie holds her rainbow llama stuffy in her mouth. Buddy walks next to Aussie in the grass, looking down at his footprints in the crunchy ice-like snow. He holds a bubble in his mouth, a term he learned in his elementary classroom, to help him to keep his words inside. And he walks. And he makes footprints. We walk. And then Sissy begins, “I hate this. I just want to sing, and I don’t know why I can’t. I’m going to sing!” She looks at me with a small grin across her face. I give her a gentle smile. And Buddy, Aussie and I listen to her sing for our entire walk.
Like clockwork, when we reach the interior of our building, my son finally lets the bubble from his mouth drift away. He yells, “Mom, she didn’t follow the rules of our meditation walk! She cheated! This is so unfair! Why is my life so unfair!” Sissy smiled and then caught his bubble in her mouth for the elevator ride to the 2nd floor and the walk down the hallway to our condo.
On the third night of our potty walk, I say the new rule, again. “Okay, kiddos, tonight we will practice meditation walking.” Two sets of eyes looked back at me with questioning and confusing. “Really, Mom? After last night, you think we should do that, again?”
Small bickering begins. Aussie picks up her rainbow llama stuffy and harnesses her leash around my body. Opening the door, I ask my kiddos if they’d like to join Aussie and me for a meditation walk. “Ugh,” I hear from both Buddy and Sissy. “I guess we have to, right, Brother?” says a confident Sissy. “I guess so,” says an equally confident Buddy.
And our walk begins as soon as we roll out of the elevator. Buddy puts another bubble in his mouth and walks ten strides ahead of me and Aussie. Sissy holds a bubble in her mouth, too, and carries a small umbrella over her head. The moon shines bright and I can see the Little Dipper above me. I hear the crunch-crunch of the ice-like snow beneath me. I watch the small steps ahead of me. I look behind me and see Sissy twirling her umbrella between her purple-fleeced mittened hands.
And we walk.
And I, again, harness this peaceful energy.
Ten months ago we learned that my son would be getting a service dog. Excitement bubbled up as my son quickly began to prepare for his new dog. He put thought into where his dog would sleep and what color ball he would enjoy catching. He pondered the size of the bowl for drinking water and the height at which the bowl would need to be placed for the dog to drink the water (without too much strain). He pronounced, “when I have my dog, I will be able to go outside by myself, right, Mom?” And, “When my dog gets here, I will have a friend to walk to the mailbox with, right, Mom?” Statements like, “Mom, do you think my dog will like me reading books to him?” and “What time do you think my dog will need to go to bed at night?”
Ten months ago when we applied for a therapy dog, we learned that our son, instead, qualified for a service dog, We learned that our son needed help preforming simple tasks, such as entering a room without having an anxiety attack; help with falling asleep at night without his body stimming and flailing; and reminders and simple nudges to stay calm. We learned he needed another layer of support – not just the emotional layer of being calm and happy when surrounded by the comfort of a furry companion.
That was ten months ago.
Then, a few weeks ago, I was sitting at my office desk one day, plugging away at numbers for next year’s master schedule for my school. My brain was twirling with information and I was focused, very focused. When my phone rang, I anticipated that I’d be connecting with a community or family member from my school. Instead, the voice on the other end informed me that my son had been matched to a dog.
Matched to a dog.
Matched to a dog.
Keeping my composure over the phone, I listened as the angel on the other end of the phone told me about Aussie. “She is very calm,” and “she loves playing with kids,” shared the voice. The voice continued, “we think she will be a good match for your son because she meets all of the criteria and requirements from your initial application and interview. …” And here is where I said a silent prayer of gratitude.
I’m sure the voice at the other end had heard mothers like me before. I’m sure she was prepared for the well of emotion, the tears to spill. However, for me, this seemed like a moment that was always too far from reach. It seemed like my son would continue to revert inward, making it more and more difficult to connect with him. My boy. I’m sure I didn’t need to tell this voice that the timing was almost miraculous because my son’s teacher is still learning about autism; leaving my son either in sensory overload or completely confused about what was next. I didn’t need to tell this voice about the short trips to-from school where my son, 8-years old, falls into a deep sleep because it is all he can do to just function during the school day. Nor, did I need to tell her about the daily tears and loud squaks and his unwillingness to eat anything other than chicken nuggets. She didn’t need to be reminded of how our family avoids going to restaurants and movie theaters and crowded parks because it is too difficult for my son.
She already knew. Yet, she listened anyway. And we made arrangements to meet Aussie.
A mere two weeks later, our non-traditional family, living in two homes and rebuilding from a disheartened past, met at Freedom Service Dogs in Englewood, Colorado. The Co-Parent and I made a rare agreement and understanding to bring a service dog, Aussie in particular, into our son’s life. And so, we shuffled into the board room and shared updates from the past school year. We learned about the upcoming 13-week training program that both of us must attend. We learned about the vest the Aussie must wear in all public settings and the treats that we should carry with us for training purposes. We learned our dog, Aussie, a beautiful black English Labrador began her training over 10-months, ago, too. Just after her first birthday, she began learning how to walk on the left side of her human. She learned how to jump with soft feet and how to use restraint from barking at nearby pups. She learned her manners in a sense. And, we learned Aussie was a girl dog, not a boy as my son requested. However, when asked by the team of trainers about there being any problem with a girl dog, my son replied, “I don’t care. I just want a dog.”
And, finally, the trainers of Freedom Service Dogs escorted Aussie into the board room. She carried a neon colored llama in her mouth and wore a purple harness (my son’s least favorite color). But she nudged her small face into my son’s even smaller hands. He giggled and pet her on the head. He turned to me and said, “Mom, this is my dog.”
Post Match Meeting:
Now we are in the waiting period for our training to begin in two short weeks. In the interim, my son looks at pictures of Aussie on a daily basis. He tells wild stories of soon-to-be-adventures with Aussie to his para-educator at school during their daily walks outside. He is working hard to transition from the top bunk to the bottom at the Co-Parent’s home because he understands that Aussie can’t climb ladders. He is practicing opening the front door of my condo complex, and holding it for his sister and me, because soon Aussie will also need help with this. He is already growing and emerging from the shell of autism.
And while Aussie isn’t even part of our lives, yet, she has brought us hope.
A BIG, Beautiful Credit to Freedom Service Dogs of America in Englewood, CO and to the Disco Dogs training program, that specializes in training dogs to serve children (over 5-years old) with autism (ASD), traumatic brain injuries (TBI), multiple sclerosis (MS), cerebral palsy (CP) and more.