All Different

I understand now the little light in her eyes when she told me. I was twenty six. The social worker hugging her clipboard apologetically. Understanding something that I didn’t yet. Tears far back in her eye handing me a life long diagnosis—handing me a secret journey—on a brown clipboard in the tiny green dining room of our second floor apartment. My (then) husband painted it. Humid summer. Abuela cooking beans and pork downstairs.

22 months. Brown curls. 

The video of her running and never turning. Abuelo forever in my mind clapping and my girl not turning. The green hedges he cut. Calling to her. Calling to her. Clapping, clapping and calling — my diapered girl not turning. The smile on my face fading, my heart slowing. 

When it hit me. 

It literally hit me.

Knowing on that beautiful day. Him in his black slacks—I saw the-first-ever-hurt-and-disappointed look. Baby turn your head. 

Knowing. 

Baby, turn your head.

Baby, turn your head. 

Baby, turn to me.

The hearing test.

I understand now. 

My (then) husband leaving us. Blaming himself. Me blaming myself, blaming him, too. No room for us. 

Only this.

The fight for her.

We were in a gym, she was running, tumbling screaming and my son on my breast— I turned quickly to her therapist:

I coughed: Will she need an aid? A person with her when she’s older? In school, I mean? When she’s in school I mean? Will she need that?

The look on her beautiful face. The kindest person in the world looking at me and down at my infant son in his stained second-hand-onesie shaking her head, no.

“No.” Then she looked away and I followed her gaze wondering if she’d lied.

Now, I understand.

My son’s diagnosis: 24 months (second-hand onesie.)

When you told me what she’d never do. When you told me what she had and I didn’t understand what you meant. What does it mean?

What does it mean?

Someone tell me! What does it mean?

Baby, turn your head.

Turn to me.

Now, I understand. 

I understand sitting in a PPT where a psychologist tells me that children like mine feel no empathy. 

Cannot relate.

What is empathy? 

My baby girl has so much empathy. 

I understand restraints.

I understand uncomfortable. 

I understand anxiety. 

Sensory. 

I understand ABA, BCBA, 504, IEP, PPT, OT, PT, 

Speech.

SPED. 

I understand 1:1. 

I understand window locks and bolting. 

I understand fight.

I understand police.

I understand why we cried. 

I  understand elopement. 

I know wipes. I know public stripping. I know meltdowns. I know chocking and I know stares. Chewing tubes, weighted vests, swings, body socks, bag packs and clips. 

I understand seeking and input. 

I know waiting and waiting and waiting. 

I understand she is loud and disruptive — Why you want to seclude her? It’s easier for you.

She is loud!

I understand bullying. 

I understand inclusion. I understand least restrictive environment. 

I understand advocate. 

Turn you head, baby girl.

Turn your head.

Turn your head.

On that summer day when she ran past the hedges and past Abuelo. When I stopped and looked at it all different. When I realized it’s not me, it’s not a lack of anything or anyone— something different.

Something is different.

All different

Willow, turn your head!

It’s no one’s fault and no one asked for the clipboard with the diagnosis and the journey. My daughter didn’t ask for it either.

Now, I understand.

See my little girl! See her work hard to fit in. See her work hard to turn for me. See her work hard to fit into our world.

I embrace that little girl. I embrace that mom and I embrace that dad.

Our world is too loud, too fast, too stimulating, too different for her.

Four years later and I understand now.   

AUTISM

I understand now and I forgive.

All different my girl is perfect.

Clear like Water.

Last night, when the mosquitoes stirred on our damp lawn Willow stirred too. I asked her to grab her sandals and we went for a walk. We walked to the end of our street where I lit a sparkler for her. She danced entranced swinging the metal stick in the air. I took her for a walk because her mind and body needed to regulate. She was a mess and going for this walk would very methodically prevent a meltdown and a potential bolt.

I scratched my eyes and thought of the never ending battle of getting her school to complete an FBA for her. The year long battle to get her an aid and the news of her behaviors. A soft wind brushed against us and I remembered the words my boyfriend spoke to me when we first began to know each other, when I needed to hear them most:

“What about years from now when the kids are older, when we are older?” I heard it crawl over the warm pavement and I looked back at Willow who was jumping with her sparkler. She was wearing felt Christmas pants, a strawberry t-shirt, and pink sandals. Red and green unicorn reindeer on her thighs.

Years from now.

When they are older.

“What about Willow?” he said. I remember the spitting anger that flew through me when he said it and the how-dare-you. 

We think we know everything but we don’t. Sometimes we learn things that are hard.

“Look at the sparkler!” Willow screeched, flapping and jumping up and down. A car drove by slowly and knowing she could turn and run I put my body instinctively between it and Willow. I watched the car pull into its driveway. The engine shut off.

His hazel eyes searching for mine and the audacity twisted like a web in his honesty.

Flies and mosquitoes hovered across the cul de sac and Willow was now picking wild flowers off a thorny shrub. Through the tangled trees and twines was the swamp which she had quietly climbed months earlier when she ran away. Past the swamp came Beach Road and then there sat that tired sun, setting and spitting an exhausted red and pink over the wetland.

I am an autism mom.

I smiled at Willow and helped her pick a few white flowers that she would add to the collection of bouquets that take up most of our kitchen table and leave little room for anything else–Willow’s bouquets that create a porcelain eggshell ready to crack and spill over at any moment because how-dare-anyone touch her flowers.

“Alright, one last sparkler.” Willow threw herself at me and gave me her half-hug. It took awhile for it to catch.

It took time.

“She may have to live with us when she is older.” I heard it echo past the cutting grass blades and I heard it move the pebbles along the street where a man walked alone.

And it moved me too.

And then, “I don’t know exactly but it is a reality and I will be there.

I will be there for you and for them.”

I swatted away a bug and kicked a rock past Willow who was bouncing about with her sparkler and flowers. I remember thinking there would never be anyone for us. I would never be able to let anyone in because they don’t know. They don’t know that my children will outgrow. They will outgrow autism like the wild, white flowers reaching and tangling into the dusk.

My love is stronger than autism.

My love is tougher than autism.

I remember his strong hand in mine and realizing that he already knew.

That he had the courage to speak the words out loud. The ones that I cannot.

“Alright, come on now, Willow.” She ran to me and put her small hand in mine, something she only does when she is clear like water.

“Mom, but can we put these in a vase?”

Behind us the wildlife stirred and the mosquitos fought their own battles across the red of that sun.

Wizards Know Best

On Wednesday, the ocean was a perfect shade of blue against the afternoon sky. I stood on the beach and looked down at my shoes and socks and wondered if today I’d have to run. An outrageous squid crept up behind me and climbed the sky casting a dark shadow on the sand. Blue, yellow, pink, green, purple tentacles all clapping indecisively and shifting the sunlight in my eyes. I could feel the thump and pump in my heart as I watched my two kids stumble and giggle through the lines of this kite. In the glare I could see the smiles on the parents turn to an awkward slant and the squid now fell limp and heavy from the sky. Down it came crashing. I climbed through the sand and began to untangle my children’s little feet and legs from the rope. All this beach and they still manage to catch themselves like backward swimming fish in a net.

I braced myself and took off my shoes and socks and placed them next to Willows. I was amazed to see my son do the same and to see him tolerate the sand beneath his toes. The wind carried his pride, “Flexible, Mom! Flexible!”

Hunching like a sore and steady soldier I knew the very real ambush and consequence of the word flexible.

The kids ran through the water and I practiced my breathing as I seemed to sense every single drop of water attach itself to their clothing inching-ever-so-close-toward their limit. My son was becoming too heightened, too stimulated by the water and what first looked like an elegant gallop turned into a hippopotamus stomp and crash: sea salt splashing everywhere and on everyone.

“Slow down,” I could hear myself muster as parents pulled their little ones from his crashes. 

“Calm, Liam. Calm!” My son lacks body awareness. He underestimates his strength and struggles with his reflexes. He also struggles assessing his surroundings often falling, tripping and hitting his head.

I reminded them. I ran after them and between the wind and the quicksand came a grotesque rogue wave that swallowed me whole–Willow’s all to familiar screams– crashing, pouring, drowning and irreparable.

Her belly was pushed in the brown sand and she rolled herself desperately deeper in the wet ocean thinking it would dry her off. Up on the beach I could see the quiet onlookers and I wondered if they carried like birdwatchers binoculars–studying us from their picnic tables, mouth gaped open wide. The little red buckets around us stopped moving and green shovels dropped like rocks in the sand. My shoes, they should have stayed on because carrying a five year old who is kicking and screaming and keeping track of my son who is now also becoming rigid is hard. There is no time for putting on shoes.

One hour later and having managed to get Willow home behind locked doors where she is safe, I waited and waited.

“Wizards!” I said. Willow’s brown eyes glanced up from behind her small hands.

“Wizards know best!” I wrapped her in my arms and for the first time she let me.

“They know about water and sand! They also know about seagulls and crashes and squeezes.” I squeezed her little body tight.

“Wizards know best. They roll you and they squeeze you. They hug you and they love you. They brush you and they calm you. Wizards, know the trick! Yes, Wizards, know best!”

There was a smile and Willow’s rigid body began to loosen up.

“Squids, kites, buckets and shovels…Wizards know best! Waves, water, salt and splashing. Wizards! They know sillies and they squeeze you and they love you and they…”

“Hug you!” Yelled, Willow as she opened her arms to me and came back.

The Girl in the Shrubs

Yesterday was a warm day and a sweet reminder that better days are on their way. Seagulls dipped down low over the playground where my children played. The air carried the ocean smell, and the sounds of laughter despite a Pandemic. The best sound is children laughing. I pushed my neighbor’s child on a tire swing and I had my eyes on my son. I knew my daughter was across the playground with a friend and her mother. The sun was warm against my face and I felt happy. I let go of that stress and anxiety sitting on my shoulders and I breathed. The laughter behind me grew louder. I smiled at the kids on the playground with my back to the boys. It went on for a while (It went on for awhile) and I kept my eyes on my son. “What happened,” asked one of the little girls that I was pushing. Her eyes were incredibly dark and her little eyebrows shot down in concern. She pointed past me toward the boys laughing. “What happened,” she said again and aimed her finger past the boys and into a sea of trees.

I turned around at the boys who were swinging sticks and pointing laughing. They laughed so hard they almost fell over. A group of seven boys ages nine and up. Strong boys, healthy boys who had control over their bodies, control over the fluctuation of their tongues and words. I looked past their sticks and pointing fingers, past the parents who were staring in shock, and there, far off in the field standing on top of some shrubs was a little girl. She was stark naked this girl in the shrubs with her pants down to her ankles. Her face was distorted, mouth wide open screaming. She was tripping over, tumbling on the shrubs. She was crying hysterically in panic throwing her arms in the air while the boys pointed at her screaming and laughing. For a moment I didn’t recognize this little girl. She looked so frail out in that field. It was so shocking a scene that it reminded me of some type of war photo I’d seen. I was trying to recall where I had seen this picture before. Her little bare legs looked weak and tiny and her face was so intense that it took a hard second for it to hit me.

The laughter of the boys and their sticks.

I exploded into a full sprint with the roar of laughing caving in on me and the tire swing coming to a halt. The black, dark eyes of the girl on the swing piercing down on me. From the bird’s eye view I could see a shadow of myself small and running. I ran and ran and ran across the mud field, past the pine tree to the shrubs and I climbed them and I flung that little girl up and curled her into my arms and onto the ground. I breathed into her neck. I unzipped my jacket and wrapped it around her.

This moment reminded me of when she was born. She was always this fragile.

Now she was sobbing. 

“I’m sorry, I’m sorry,” I said to that little girl. 

“My pants!” She screamed. “My pants are wet!  Mommy, pants! No!” 

We sat forever.  I was afraid to turn my head to all that was behind me. I helped talk her through the little bit of water that got on her knee. I used every tool and strategy I know to bring her back to a place of calm. When we got up the boys had dispersed and mother’s looked awkwardly away. With all the skills she’s taught me from moments like these I managed to diffuse her meltdown: we switched clothes and with dried streaks of tears on her face she somehow found her way back to a friend. I wanted to leave but as always I refused. This playground visit would be saved and I was not going to give up.  With legs weak I heard the similar nauseating laughter again. 

“Oh my god, did you see that?” They said, “It was so nasty. She was just standing there. Oh my god, dude. It was crazy! That was so nasty, dude! She was just standing there, screaming.” They could not stop laughing as they told their older brother about what had happened. I felt my fists clench and sour in my throat when I spit the words out one-after-the-other: “Next time you see someone having a hard time and crying you should approach them and ask them if they are okay,” I said it loud and awkward and the playground became quiet.

The wind slapped my face and hair stuck to my lips: “I’m not sure why you would point at a little girl who is crying. You laughed at her. They laughed at her!” I yelled this looking frantically around as if someone would nod their head in agreement that it was disgusting and wrong.

“Why would you laugh at a little girl? What made you think it’s okay to laugh at someone who is crying?” I was trembling and did not realize I was still holding her wet pants in my clenched hand.

“We didn’t know she was crying–we didn’t point–we thought the kid…” one of the boys mumbled.

The girl in the shrubs. The brown eyed curly hair girl in the shrubs she’s my daughter. Every now and then I let my guard down and I think it’s okay. I can take my eyes off of her for a moment, it’s okay but it’s not okay. The girl in the shrubs she’s autistic and among the dozens of other things she’s worked on she is also working on tolerating her clothes getting wet and not taking them off in public. For my daughter it is a terrifying, horrible experience to have just a drop of fluid on her clothes. I should’ve paid more attention and I should not have let it happen. The girl in the shrubs is the sweetest most caring little five year old. The butterfly loving flapping singing dancing little girl she is a gem-one-of-a-kind girl. My little girl would offer you her seat and give you a compliment when she met you. She loves birds and bees and she is always listening. She would be your friend and smile at you. Her heart is so kind and full. The girl in the shrubs she’s my girl, my Willow.

The Calluses Between Our Fingers

I put my son to bed and carefully inch “closer” to him. He wiggles and squirms as he always does and I smile at him. I tuck my chin downward to protect my teeth. It is a relatively smooth goodnight and when he tries to snuggle closer his busy body hits my chin and mouth. I close my eyes and swallow the yelp and pain of that blow. I wipe a tear, kiss his soft, sweet hair and remember.

I remember how he used to throw toys. How he hit–the daily data, 15+ times a day. I remember his evaluation, I remember my daughter’s evaluation. I remember the stripping of beds, the cracked kitchen tiles, I remember the fighting for my children. These are not easy things to remember.  The fight to be heard and  believed, and I remember the blame and doubt. I remember the sadness of seeing my children struggle. I know in my heart the familiar wish for things to be easy for them. Things are harder for us and I accept that.

I switch off his nightlight and participate in the twenty second skit we perform every night: “I caught it,” He screams anxiously. He catches my kiss and I try to do it just right so he won’t get stuck on it: “You caught it, buddy. I love you.”

The calluses between our fingers. I look down at my hands and realize how thick my skin has become. I realize that I accept autism and I accept the fight. I no longer doubt myself. I am stronger than I have ever been. 

I see my daughter and son for who they are. They are not the problem, the problem is how the world reacts to them. My kids are working hard to fit into our busy world with their disability. My children are asked to change for us and what are we doing to change for them? When do we stop and listen to them?

The calluses between my fingers, they might be thinner if I lived in a more accepting and educated world. My pediatrician would not have doubted the clueless twenty-six year old me and diverted me from getting my child the help she needed. I would have received help when I needed it and I would have been encouraged and complimented on this hard work. In a world that is accepting of this invisible disability I would not have to prove or explain my five year old, instead I am directed toward the resources that my children need. In a world that is more understanding I would not be told to punish my children for their inability to control their little bodies. I would be encouraged to approach their most difficult moments with love and understanding. In a world that is more understanding you would smile at my children and say, Hello. 

I lean close to kiss my daughter goodnight. She is bouncing and screeching. “Calm body,” I whisper to her. “Calm body, Willow” I say this as I squeeze her arms and settle her down. I assess her mood and speech. Tonight she will go to sleep easily, perhaps she will sleep through the night and I can rest. 

In a more accepting world moms like me they would be encouraged and supported. They would not feel the need to apologize.  Moms like me would be praised for the  hard work and the pain they carry because for mom’s like us raising our children is different and it is hard. 

The calluses between my fingers are thick. 

I know my boy and I know my girl. I wish the world would help me in knowing them too. 

Warm Blooded People, Mom.

Willow squeezed my face close to hers and whistled a high screech through her teeth :

“Warm blooded people, Mom!”

It blew me away. 

Warm-blooded people, Willow. I said back to her.

She wiggled and kicked her busy body around on the couch and I tried to avoid another blow to my chest by leaning backwards.

“You are warm-blooded because you love me!” She swung her arms intensely to signify this big love.

I do love you, I said. 

“Cold blooded people,” Her body, like some old steam engine stopped as she stared intensely into the living room. 

“Cold blooded people don’t love me.”

What do you mean, Willow? I said. I think everyone loves you. 

She buried her face into the couch and using both her legs  kicked that thought like a mule backwards.

“Some kids,” she whispered,  “some of them are cold blooded.”