Embracing Differences, Our Journey

Nai and I in a local park

This piece is dedicated to my Mom, Trudy and in loving memory of my Dad, Rudy, who showed me that the root of all amazing parenting is unconditional LOVE! 

“Don’t claim it.”  “Don’t let them label her with anything!” 

Almost everyone we knew said this to us in one way or another when Nai didn’t speak as much as other kids. 

“She’ll talk more. Don’t y’all worry,” they reassured Kes and I between head nods and low hums. 

Those words held us, fed us, became our fortress, shielding us from doctors eager to label her. “We’re going to get another opinion,” we would tell them as the visits ended. 

Until 3 words began tearing at the foundation of our fortress. 

Global 

Developmental 

Delay 

I still recall the tingling in my legs that afternoon as we sat in our local Early Intervention office; my mind swinging between screams of WHY us, WHY now to a sink into utter sorrow. But somehow, by grace of God, I managed to sit there, nodding through the ache, barely catching their words - every other sentence mashed into the next. 

Several months before, I had left a full time job in the non-profit arts sector to come home. Nai wasn’t sleeping well, and I was weary of juggling graduate school and Mama life.  I wanted to BE with my baby beyond hurried goodbye  kisses as we left her with my parents. I dreamed of whole days together  - Mommy and Me outings, and play dates with her little friends sandwiched in between. 

I had one connection already, another former co-worker who, like so many other women raising kids, left the cubicle world to jump into our land of sippy cups and diapers. 

But, in that moment, hearing those three words again - Global Developmental Delay - pulled us, head first, into another reality. How would we navigate this together? Could we help her catch up? 

Still, even as I felt weighted down by grief and shock, I couldn’t live there, we couldn’t live there. Because Nai needed us. 

I downloaded a shared family calendar app (that I still use to this day, COZI), and we leapt into early intervention services  - speech, occupational therapy, and specialized education.  

Until even these teachers and therapists pushed us towards deeper evaluation… a label; oh, how my hubby Kes and I dread labels.  

There is so much America heaps upon Black children. Could we take one more thing? 

If I close my eyes, the doctor’s office in the hospital room from all those years ago comes back into focus. 

After listening to Kes and I go back and forth with background information and observing Nai, interacting with her, the Doctor said, frankly, “I am afraid there is only one word for what we are seeing - autism.”

Nai on kindergarten graduation day .. a quiet moment on the porch

The air shifted, and I felt smothered  - one sentence, one word, that altered the trajectory of our lives. 

He agreed to perform a battery of tests - an MRI of the brain, testing for an MTHFR gene mutation (which is common with some kids on the spectrum) to look for underlying issues. 

In the coming weeks, somehow with the help of God (prayer on top of prayer) and our families, we pressed forward through all of it. Our parents were lifelines - reminders even as our lives felt increasingly small. We were not forgotten. Their prayers lifting us up, gently, through each challenge.  

Nai drawing at a local city park

“Focus on what she can do.”

I will never forget this simple sentence. One of Nai’s earliest teachers said it to me at the end of a one-to-one session at home. It became our mantra as a family - an invitation to celebrate progress even during those painful moments when we were all exhausted; we came to see every word and new phrase as a miracle, a breakthrough worth celebrating. 

Nai and Pop Pop (my Dad Rudy in loving memory; may he rest in heaven)

Nana (my Mom Trudy) and Nai at the park

God has always filled our lives with signs that despite the isolation we often experience on this journey, we are not alone. This often shows up with the deep love and encouragement of my Mom, Trudy, Mom Liz, and in memories of my Dad, Rudy. Other days it comes as a warm knowing smile during a grocery run, or an unexpected encouraging messages and prayers from dear friends (thank you Kayla, Chel, Shan, Jenna, Ebony, Dionne, Angie, Qiana, Michelle, and Amelia).

Still, for years, I did not share with many people about our day-to-day challenges. I opened up to some friends early on and had been met with a barrage of questions, or endless unsolicited advice. Few had just listened. And for years, I closed up to almost everyone except my  husband, Mom and Dad, and a handful of close friends.

Why I Do this Work 

No one tells you about the isolation - not the doctors, therapists, or teachers. How can they? Many are not living anything remotely close to your day-to-day reality. 

One of my favorite meditation teachers Sarah Blondin spoke in a meditation about how there are places we all encounter where prayer is our only solace. 

Talking to God (sometimes in the simplest of sentences - “God help me”) and breathing in deeply, rooting myself in mantras (“I am divinely guided, protected and supported”) and meditations came to be my well-being anchors; these are the grounding forces that support me in navigating the uncertainty of our days; they also teach me to inhale the sacredness of joy and see gratitude as a way of being, not just a list of things to occasionally tick off a list. 

Every sentence Nai says…

Every hug and warm embrace 

Every great and good day in school is celebrated. 

It is a level of mindful awareness our family may not have taped into if she were neurotypical.  

Our family photo - Kes (my soulmate) , Nai and me at her school’s Winter love Dance (Feb. 2024)

Nai and her Grandma Liz

Several years ago, I wrote a poem “Choose Love” about shifting into the kind of loving awareness which moves us “beyond the borders of the soul” so we can see one another as God sees us - whole, divine, worthy of being. 

It is why I felt God leading me to create When Motherhood Looks Different. 

I craved a soft space for us to land and meet, unpacking our motherhood journeys together, embracing this dance of hope and longing, uplifting those everyday miracles we come to appreciate - amazing therapy sessions, new words, nights with good sleep.

And I also wanted to offer mindfulness coaching (rooted in Mindfulness Based Stress Reduction, and TSD mindfulness) to our community; we are so often overlooked in wellness spaces. And yet parents raising children with complex medical needs have some of the highest rates of stress, anxiety and depression. According to Disability Scoop, “Mothers of adolescents and adults with autism experience chronic stress comparable to combat soldiers and struggle with frequent fatigue and work interruptions, new research finds. These moms also spend significantly more time caregiving than moms of those without disabilities. Researchers followed a group of moms of adolescents and adults with autism for eight days in a row. Moms were interviewed at the end of each day about their experiences and on four of the days researchers measured the moms’ hormone levels to assess their stress. They found that a hormone associated with stress was extremely low, consistent with people experiencing chronic stress such as soldiers in combat, the researchers report in one of two studies published in the Journal of Autism and Developmental Disorders (2009).

The caregiver needs care, too. 

There are so many ways these practices help us respond to stress instead of react, and ground us into calm as we wade through the hectic nature of our days. 

When Motherhood Looks Different is born out of love and the wounds our family carries; it is a call for us, the caregivers, raising kids who are neurodivergent /medically complex, or navigating our own health challenges to root ourselves in well-being practices that sustain us, as we nourish in a community. 

I believe the most powerful sentence a Mama can say to another Mama is “I  see you.” 

Photo of me shot by husband Keston “Kes” De Coteau, owner of Keystone Productions (video and photography biz)

"Speak the truth, even if your voice shakes."- Maggie Kuhn

It took me 11 years to publicly speak aloud some raw truths - my husband Kes and I move through waves of grief some days, mixed with joy, gratitude and uncertainty on this neurodivergent parenting journey. 

Those words came tumbling out last  May. After sharing my poetry at a mental health event, we were asked to talk about how we were feeling mentally, and before I knew it, I was sharing about my mothering journey, tears mixed with trembling hands as I lifted up the ways it’s shaped me, and those struggles with isolation, because it’s a different mothering journey. 

And something opened in me. I shifted away from swallowing my truths right there. I am deeply grateful to Kellene Diana for inviting me, and doing the kind of work, through Green Heart University that calls us to remove the shame and stigma around mental health. 

I felt relief from showing up fully in authenticity, and it solidified something else  - When Motherhood Looks Different, as a community and small business offering tools for Moms like me to center wellness was starting, even if everything wasn’t perfect.  I launched on social media Mother’s Day weekend 2023.

Because none of us should have to walk alone, we have each other, across differences and life experiences. We matter. Our children matter. Our stories are significant. Holistic well-being is our birthright.