When I got pregnant with my daughter Arizona, I had visions of toting my coo-ing little cherub with me everywhere. I pictured myself as a stylish, hip and carefree mama meeting girlfriends for coffee while my baby sat contentedly in her stroller. I would have the healthiest kid on the block and effortlessly whip up homemade organic baby food for every meal. Everywhere we went, people would marvel at my polite and poised mini-me, whispering to each other as I passed by, “Wow, that’s some good mothering right there.”
When I think back on this, I have to laugh at my blissful ignorance. I am writing this with a glass of wine in hand, reflecting on my recent trip to the pharmacy with the now 7 year old Arizona. Immediately upon entering the store, she was fixated on wanting a new toy. After calmly telling her that wasn’t our plan for the day, she began to whine and protest. As the pharmacist pulled out my prescription, Arizona started screaming at the top of her lungs: “I just DO NOT want you to say NO when I said I wanted a toy!” She then bit her arm for emphasis and stomped her feet. I swear there was a smirk on the pharmacist’s face as he handed over my refill for anti-anxiety medicine.
This is the on-going story of my journey as a mother: how I navigated the heartbreak of having a child diagnosed with special needs and, along the way, discovered a very different vision of motherhood than the one I started out with.
From the very beginning, I had a screaming, fussy child that shocked even my seasoned lactation consultant with her non-stop wailing. Because I was breastfeeding Arizona exclusively, I became convinced that my diet was the cause of her pain. I whittled my food consumption down to plain rice, fruit and un-seasoned meat, but the screaming continued. What was wrong? Why couldn’t my daughter ever calm down and be at peace? I was miserable and so was my child.
At 4 months old, Arizona also developed eczema and was covered in a rash from head to toe. We spent the next year finally unveiling all of her food allergies and intolerances and figuring out a balanced diet given the few options that were available to her. The eczema slowly began to clear and was almost completely gone by the age of 2. It was a miracle! Maybe there was still hope for my vision of being a chill mama, sipping on a fruity iced tea with my girlfriends and quiet baby in tow.
But it was also around this time that I got a phone call from my sister, who had three young children of her own. “Susanna, I’ve been thinking a lot about Arizona. I don’t know what it is, but there’s something different about her.” I was stunned, shocked, worried and scared. I also knew she was right. I immediately called my pediatrician and burst into tears. Not long after, we were referred to the Westside Regional Center for a psychological evaluation to determine Arizona’s eligibility for early intervention services.
To this day, I do not know how I got through that first appointment. The assessment area was a bare walled, lifeless room devoid of anything childlike. Immediately upon entering the room, the psychologist looked at my daughter, observed her for a few moments and turned to me with a frown. “This looks a lot like autism,” she said. “But you already knew that, right?” “No,” I answered weakly, “That’s why we’re here?”
My knees wanted to buckle right then and there. I wanted to simultaneously punch the psychologist in the face, grab my amazing daughter and run far away from that joyless room. As the assessment progressed, I felt like the wind kept getting knocked out of me, over and over again. Every time the doc didn’t get an acceptable answer from my daughter, she was quick to point out, “Oops! Mom, she failed that one too!” My heart ached as I watched my precious daughter struggling to make sense of her purpose in that room with the stranger she didn’t understand. “Mama,” she said repeatedly, “I want to go home.” “Soon, Peanut,” I replied, “Mommy’s here.”
Over the next few months, Arizona was poked and prodded and tested by myriad professional specialists. The eventual diagnosis was that Arizona had something called Sensory Processing Dysfunction (SPD) and Dyspraxia (motor planning delays) that placed her somewhere on the autism spectrum. We were also told that her issues were largely treatable. That’s all I needed to hear.
I have to say that as devastating as it was to hear that my child wasn’t neuro-typical, I was also fueled by a new discovery: I had a job to do and that was to fix my child. If I couldn’t be a chill mama, I would be a warrior mama. And if there was someone born for the task, it was me. How I needed this new project! My half-Chinese, Capricorn, strict upbringing heart began to soar. I had a new focus and this would be my revival.
My days became a blur. I was carting Arizona to a variety of therapies multiple times a week. I was researching new doctors and programs that touted the latest healing discoveries in children with similar issues. I grilled therapists daily about Arizona’s goals and progress and asked what other things we could do at home to help things along. I was making gluten, egg, dairy, soy and nut free meals three times a day. I was managing daily meltdowns from Arizona’s seemingly endless issues with sensory overload. I was unsuccessfully potty training her for years and became more intimate with her poop than I care to write about. It became a full time job to get funding and reimbursement for all of Arizona’s needs. I was exhausted but hopeful. I never knew myself to fail at anything, and mothering Arizona would be no exception.
I remember how important it was to meet another mom whose young daughter was also diagnosed with SPD and other challenges at a young age. We kept in touch with the family and watched the girl progress and grow out of any semblance of a diagnosis. When she was 5, they went to visit the developmental pediatrician for the last time. “We’re out of the woods, Susanna!” the mom told me at our next meeting, “We no longer qualify for any therapies or interventions.”
I was floored when I heard this. I held onto my dream that we would one day be hearing that Arizona was out of the woods too. And when she was 4 years old and was accepted into every private school we applied to, it seemed like that day had finally come. She thoroughly impressed the admissions directors—“Arizona amazed me with her language and listening skills,” one acceptance letter read. I chalked it up as a big feather in my motherhood cap. All my hard work had clearly paid off.
Not long into Arizona’s first year at a mainstream school, however, a different picture started to emerge. She showed signs of anxiety early on. When I picked her up from school, she would be biting her hand in frustration and seemed tuned out from the overstimulation of the day. At our first parent teacher conference, we learned that Arizona was easily distracted and would often stare into space and ask questions that didn’t pertain to the topic. It was hard for her to sit still and she would hop or twirl around the room. She was also starting to throw things and needed extra support from the teachers throughout the day.
I was desperate to regain control in this journey of fixing my child. My whole plan to work hard and fix everything was falling apart. Other moms were able to heal and recover their children, so why couldn’t I? Did this mean I wasn’t a warrior mama after all?
We eventually made the decision to leave Arizona’s first school in April of that year. It was difficult to let go of the idea of my child going to a typical private school. But then we found out about Cheerful Helpers, a unique program that helps children with special needs by treating the entire family. As soon as Arizona started school there, it was clear right away that she was finally in a place that worked for her. Not only where her bouts of anxiety and emerging behavioral problems starting to dwindle but her self-awareness and confidence began to soar. Our little girl, in an environment we never pictured her to be in, was truly starting to thrive.
However it wasn’t until our second year at Cheerful Helpers that I had my real epiphany. My husband and I were participating in a session with staff therapists, Mary and Dorrie. I had just returned from Arizona’s most recent neuro-psychological assessment and was giddy with excitement to share my news—the doctor had told us that the sky was the limit for Arizona. At this, Dorrie looked at me gently and smiled, “Susanna, remember that the sky is the limit for you as well.”
Not long after, I was watching Arizona play “what are my girl dolls feeling”—one of her favorite games—when she came up to me and happily exclaimed, “Mommy, I just like the way I am!” And finally, it clicked. The sky really is the limit for both of us as long as we can accept and love ourselves.
It was easily the aha moment of my life. My intense effort to be the “perfect” mom had been fueled by an incorrect notion that who I was, intrinsically, just wasn’t good enough. It seems cliché to say that my daughter has been my biggest teacher, but it is the truth. Not only had I always felt an underlying need to fix my child, I also thought I needed to be fixed too.
Now as I am with my daughter, day in and out, I realize that we are both whole and complete individuals who are on respective journeys in this life. We are both children of God. We are both craving to be accepted, loved, honored and heard—just as we are.
I am absolutely in awe of my daughter. I enjoy and cherish her so much and feel excited about her future. She has so much to offer this world.
And as I’m learning, so do I.
Have a look at Susanna’s website