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.

our kids need to know

our kids need to know

 I am saddened, outraged, and confused about the unnecessary killings of George Floyd, Ahmaud Arbery, Breonna Taylor and countless other human lives.  I ask myself, like so many of you, how can racial injustice still thrive in 2020? 

As soon as I am ready to begin a dialogue with someone about race, I remind myself that I’m white and I am privileged because of my whiteness.  I remind myself that I’m also raising two children, also white, with the same privilege.  We go on walks to the creek by our local park –  and we don’t even question our safety.  We ride our bikes in the street because we trust that others will slow down when they see us. I feel valued and heard when I make a phone call to my child’s school or doctor’s office.  I have a steady, fulfilling profession where I can take healthy risks and still be appreciated (and paid).

And while we don’t live a lavish lifestyle, I recognize that the life I’ve created is truly privileged. So, now more than ever, I truly believe it would be more of an injustice to my kids, at the young ages of 6 and 9, to avoid talking about the deep pain points in our country.   It would be wrong to ignore what is happening because of thinking such as: my kids are too young, my son has autism, and I must protect them from the ugliness of the world. …

In fact, in a recent conversation with my son, Buddy, who sees things in one box or another (and never in a basket), I learned just how disheartening today’s climate is for our children.   After reviewing some visual cards to break down the story of “why” George Floyd was killed, my son said, “I don’t get it, Mom.”

My response to him was about trying to understand what part he didn’t understand.  Was it the part where Mr. Floyd was arrested or the part where people became very angry.  I even asked him to repeat what he knew to me.  And, he did understand the sequence of events.

After talking some more I learned that Buddy didn’t get the heartlessness of acts of violence.  He didn’t understand why Mr. Floyd’s skin color even mattered.  Autism or no autism, Buddy understands the basis of humanity.

And, I agree with him. 

Today, I commit to asking myself the difficult questions about my role in our countries’ current racial tension.   I will have real conversations with my children about George Floyd, Ahmaud Arbery, Breonna Taylor and more.  I promise to shut down conversations that allude to racial bias, because my kids need to know that as a white individual it is my duty to be an ally for others.  And, I will be fierce in my belief that talking about racism won’t create a divide; rather, it will lead to inclusive, productive conversations.   Part of being a white mother in today’s world is more than just teaching my kids about being kind and inclusive.  It is about showing them their own power in fighting against racism – and in always being an ally for another person.

don’t fix me

Hans Asperger once said,

The good and bad in a person, their potential for success or failure, their aptitudes and deficits – they are mutually conditional, arising from the same source. Our therapeutic goal must be to teach the person how to bear their difficulties. Not to eliminate them for him [or her], but to train the person to cope with special challenges with special strategies; to make the person aware not that they are ill, but that they are responsible for their lives.

Isn’t so much of life about bearing witness to our difficulties and working through the murky waters?  And then to celebrate the good moments?  There is nothing to eliminate in life, because in all honesty, life gives us difficult situations so that we can learn and grow into our best selves.

This quote is my reminder that all is well.  This quote helps me to breath – and to remember that Autism isn’t an illness.  Rather, Autism is our teacher of responsibility, social interactions, accepting noises, and recognizing that sometimes we need a break when things are too much.  Lea

This quote is my reminder that we cannot control what life brings to us.  Rather, we can only control how we respond and how we teach our children to respond.  We can control how we love and how we show love to our children.

One of the toughest parts of parenting a child on the spectrum, is allowing my child to fail and to feel the raw emotions.   The protector in me wants to blow a huge bubble around my children , protecting them from the mean words, the stares, the confusion. However, the educator in me knows that these experiences are really our teachers … they are vital experiences in teaching our children about how to live in, our often non-friendly sensory, world.

 

mr. snake is my friend

mr. snake is my friend

Cleaning out the car is just one of the many opportunities during the novel COVID-19. Ridding the trunk of the sleeping bag, stashed in the trunk corner for an emergency, an extra crockpot for who knows what, empty granola bar wrappers during the after-school feeding frenzy, and other miscellaneous items actually feel good. There is a sense of “awe” and a deep breath you can take when your car feels a bit lighter.


And yet, all of that supposed junk in the car is like finding a Black Opal for Buddy and Sissy – who have now lived, learned, and breathed in the walls of our home for 10 weeks. So, the cleaning of the car is a welcome adventure filled with new capes for the princess, giant blocks for stacking, and a long, lonely metal cable lock in need of a friend.


Yes, you read these words correctly. The long, lonely metal cable lock in need of a friend and Buddy immediately recognized this. At first, glance, when Buddy ran through the back yard with the cable, I used my Momma-Bear voice, shouting, “What are you doing, Buddy? You might get hurt with that cable.”


“No, Mom, don’t worry, I’m just going for a ride and I’m totally safe!” shouted Buddy as he zipped passed me and then over the slip-n-slide engulfed in green grass and mud. Buddy continued to zip, run, jump and vroom around the backyard with this cable until finally, his belly started to rumble and his mind shifted its focus to food. He left the cable in a parallel form on the grass next to the slip-n-slide. And, I sighed a sense of relief, believing the cable intrigue found a final period.


And when the long, metal cable lock didn’t appear in our yard, again, for about two days, I made the general assumption that my significant other picked it up – and stowed it away somewhere. I’m sure that assumption was also made about me. Life continued with walks to the creek, making popcorn for snacks, meltdowns every day around 3 PM and feeding the birds every morning. We sounded out letters and practiced our multiplication tables. We baked cookies and failed at a new dinner recipe.


Yet, as anticipated, the cable reappeared one morning while I was enjoying my earl gray tea on our porch. “Hey, Mom! I want you to meet my friend!” shouted Buddy from inside the house.


With a dust of sleep still in my voice, I echoed, “Okay, Buddy,” as I indulged in the very last sip of tea. And, just as I put my feet the ground, Buddy appeared with the long, lonely metal cable lock from two days prior.


“Buddy, please don’t play with that cable. It could hurt you. And, it is going to hurt my wood floors.” I touted as soon as Buddy appeared in the doorway to our patio.


“Mom, I want you to meet Mr. Snake,” said Buddy with excitement and a tone of prowess. His eyes, an intent hazel brown and his mouth brimming with a genuine smile told me that this moment was real.


I found the playful, non-judgment part of myself and said, “Okay, it’s nice to meet you Mr. Snake.”  Smiling, I reached out to touch him and then became afraid because, alas, some snakes have venom.  


“”Don’t worry Mom.  His venom is only for the villains.  And, Mr. Snake is my friend. He plays with me. He goes on adventures with me. I’ve been keeping him in the garage because it is so nice and cool in there.” exclaimed Buddy.


And I listened as Buddy shared everything about Mr. Snake: he is a rare species, what he eats, how long he sleeps, the best climate for him to survive in. … The part that struck me the most, that splintered my heart, were the words, “he is lonely Mom.” Hum, I said out loud to my son. “Can you tell me why he is lonely?” I prodded.


“Sure. He is lonely because he has no one to play with. But, not anymore because now he has me.”
At that moment, I canceled my scheduled Zoom meetings, texted my colleagues that I was unavailable, and found some much-needed time to play with my son. No guilt. No apologies. There wasn’t, and still isn’t, anything more important than togetherness and love. We spent the morning dancing to Taylor Swift and Michael Jackson. We jumped on our trampolines and then we rolled in the grass.  We ate loads of popsicles – perhaps an entire box (but I wasn’t paying attention). 

All the while, Mr. Snake, stayed on the patio, right where Buddy left him.

It is rather commonplace for some children on the autism spectrum to create friendships with inanimate objects.  In fact, it is also commonplace for neurotypical developing children to do the same.  The beauty at this moment is recognizing my son’s creative spirit and mind – and listening to his words.  The beautiful side at this moment is not dwelling on the fact that perhaps, during COVID-19 coupled with a boy on the autism spectrum, that my son truly is isolated; rather, his beautiful mind is able to find the joy and the beauty in a lonely, long metal cable lock.  I don’t know about you, but there is a need for more love in our world and I’m thrilled to share it with Mr. Snake.  

i choose grace for myself

i choose grace for myself

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.

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