‘Shayla, stop bothering me!’ Now, 7 years later, I’d give anything to hear her call to me. I long to hear my baby say, ‘Mommy.’: Autism mom shares daughter’s diagnosis, ‘We’re her voice’

“I don’t really know when I decided I wanted to be a mother. As a young girl growing up in St. Lucia, I don’t recall spending my days nurturing dolls, mothering them with experiences most girls could draw upon from watching their own mothers. As children, our concepts and ideas are so limited by our experience, and I didn’t get to experience what it was like to have a typical family.

My father was never consistently in the picture. He was suffering from drug addiction, often in and out of rehab. When I was 8 years old, my mother left us to emigrate to Canada, in search of a better life she could provide for me and my two brothers. That move resulted in sibling separation as well. My brothers were sent to live with family in the more rural countryside, while I moved to an urban city with extended family.

Growing up in the city compared to the country should have seemed like a dream but I felt far from lucky. I suffered a lot of trauma growing up that resulted in a negative outlook on life. As a teenager, I rebelled hard for a few years, got involved with the wrong crowd, likely seeking to fill a void that had been created by my difficult upbringing. I was angry and often felt alone. When I finally did consider the thought of having my own family, I knew everything about what I didn’t want it to be like. Selfishly, many of my thoughts of being a mother involved living vicariously through my child, getting to live out by proxy all the experiences I yearned for as a little girl. Most of all, I knew if I was going to be a mother, I would pour my heart and soul into it, do everything I could to give my child the best experience possible.

I met Sean about 3 years after I moved to Canada. He was a single parent of two kids at the time. I fell for him almost immediately — everything about him was just so captivating. He was kind, sweet, loving, hardworking, and an amazing father, not to mention super handsome. He said all the right things, he did all the right things. We would talk on the phone for hours, spend all our free time together. I fell head over heels pretty quickly. Sean was a family man, the type of man any parent would want their daughter to marry. It wasn’t always a fairy-tale though. Our relationship had its ups and downs. One thing was for sure though -—no matter what, the deep, true love we felt for one another always drew us back to each other. Being a stepmother isn’t even a little bit easy. I had no idea what I was getting into. It was certainly not always hugging and kisses, and many times, I didn’t feel liked. But I had to be a mom… More and more, I wanted to be a mom to my own child.

When Shayla was conceived… it was not planned. In fact, we weren’t married, nor in a committed relationship at the time. I remember feeling scared, excited, anxious, that range of emotions I assume many new parents feel they get that ‘positive’. I didn’t tell anyone at first. I had to get it confirmed by my doctor. Father’s Day was around the corner and that’s how I told Sean. I remember him kneeling near my bed, I cried… tears of joy, fear, who knows. He simply said, ‘I’m here to support you.’ I remember this day so vividly. I cried so much.

My pregnancy was a difficult one, physically and emotionally. Because Sean and I were still navigating where our relationship stood, nearly every day was an emotional roller coaster. I felt alone, we fought a lot, I cried a lot. Physically, my body was struggling too. I experienced cramping and spotting and was placed on bed rest during my first trimester. I remember being so scared in those early weeks but things stabilized and the baby continued to grow. At 4 months pregnant, I attempted to return to work. That’s when an ultrasound showed an incompetent cervix. I was placed back on bed rest at 5 months pregnant. This added to the emotional stress, making my pregnancy even more difficult day by day.

When I found out Shayla was a girl, I was thrilled! The first baby girl in my family in 29 years – since my birth. We were all so excited to meet her and welcome her. Let the planning begin. Everything I didn’t get to experience with my mother, I would do with my daughter. I daydreamed about visits to the salon, shopping, talking about boys. I envisioned my baby girl getting married one day and having kids of her own. How quickly I had gone from worrying about her survival during pregnancy to mapping out her entire life.

I went in for my cesarean section on February 10, 2011. I was ready to get my body back! During pregnancy, I had gained 73 pounds. Most of the time I had felt beautiful though, despite the weight gain and changes to my body. I had to arrive by 8 a.m. Sean, my mom, and I walked into the hospital and that’s when it became all so real. I was going to meet my baby girl for the first time, face to face, in a matter of a few hours.

Sean sat with me. They needed to inject me twice to prep for her birth. I cried throughout the procedure. The doctor and Sean tried to calm me and console me to no avail. The pushing and tugging on my tummy did not help. When the doctor asked Sean, ‘Look,’ I knew it was time. When I heard her cry, my life was changed forever. Sean cradled her and I kissed her. I fell in love. She was 8 pounds, 3 ounces of perfection. My dreams for her continued to grow. We had no way of knowing just 3 years into her precious life, she would receive a diagnosis that would shatter all the plans I had dreamed about for her future.

During Shayla’s first year, she met her milestones and there was no reason to suspect anything was different about her. When she was about 13 months old, her daycare staff began to report concerns. They suspected, due to some of her behaviors, she may have autism. We struggled immensely with this. The more we learned about autism, the more questions we had and we brought our questions and concerns to her doctor. Lots of appointments but not many answers. It was too early to be sure, we’d need to wait until she was older. As each day passed, we became more and more vigilant and started recognizing the ‘red flag’ characteristics of autism in our daughter.

Shayla’s regression happened quickly. At 18 months, we started losing our daughter, her words, her independence. I remember like it was yesterday, a day where we were home and Shayla was playing and having fun. She was being silly and running around the house yelling, ‘Mommy, Mommy, Mommy, Mommy!’ I stopped her and said, ‘Shayla, stop calling me, stop bothering me.’ 7 years later, I would give anything to hear her call to me. I long to hear my baby say ‘Mommy.’

I cried for days after getting the official diagnosis: moderate to severe autism. We knew it was coming. I thought I was prepared to hear it, to see it made official. I was not. Sean was stronger than I was. He was able to accept it a lot quicker than I was. That night, I hit rock bottom. I was at my worst. I couldn’t go another day; I didn’t want to. I was scared, I was in denial, I was embarrassed. I felt like a failure, how could I have done this to my baby? What did I do wrong? Was it stress? The wine I tasted here and there when people around me had a drink? Was it the facial treatments I continued to get during pregnancy? Now we know a lot more about autism, I know that it’s unlikely any of those things caused it.

Still, some days I hated myself, I had so much anger, pain, and sadness and nowhere else to direct it.  The meltdowns, the self-harm, hurting others… Why did it have to be my child going through this? Why her? Hadn’t I gone through enough trauma growing up? This was not my plan. Her life had to be better than mine. I had to do better than my mom did. I had to protect my daughter… what now? I struggled, I continue to struggle, but I have to be strong for Shayla.

Our life now is still about helping Shayla reach her fullest potential, it just looks a lot different than what I had planned. Appointments, therapies, day in and day out, it never ends. Struggling to find balance between accepting her abilities but still hoping, wishing for better outcomes. People who do not have a special needs child will never grasp the immense task of raising one. When Sean and I made the decision not to have more kids, it wasn’t an easy one. We had many discussions with our doctor and Shayla’s neurologist. We looked at genetic testing to help us make the right decision. Even after those tests came back ‘normal,’ we still had to face the reality raising Shayla would take everything we have to give. She needed us and at times, she needed all of me. My Shayla would remain my one and only. Still, a part of me longed for the experiences I had dreamed of while I was pregnant. Because of this, and because we both love kids, we decided to become foster parents. I am so grateful for that experience, and for the experience of helping raise my stepchildren as well. Although Shayla needs me so much, I have enough love to share with others.

The burnout is intense, the struggle is real. I struggle with self-care. It doesn’t exist in my world. This is my reality. Between raising a special needs child and fostering, there often isn’t much of me left. I love being a parent so much I put their every need above my own but I’m tired! There are times I feel like I can do it all and times I can barely manage to get out of bed and face the day. You wouldn’t always know it by looking at me, I hide it well but the exhaustion is always there.

I still cry sometimes, but now they’re more likely to be tears of joy. Shayla has such a beautiful personality and continues to grow into her own little person. Our beautiful, phenomenal, strong, assertive, resilient, confident, intelligent, feisty, diva of a special child has been a truly precious gift. If we could, Sean and I would take away her struggles. We live for her. We strive every day to be the kind of parents she deserves. We hope she knows this.

As we look back and reflect on our journey, although we wouldn’t do anything differently, we identified an opportunity to do better for our precious kids. Sean and I have always maintained Shayla will have a voice. We are her voice while she cannot advocate for herself and so we birthed ‘Shayla’s Voice.’ Our goal is to provide resources to families in our community solely based on other parents’ personal reviews and journeys.

We are determined to create and leave behind a better, more accepting world for Shayla and all other special needs individuals. For as long as we are still with her, we will be Shayla’s Voice. We found Shayla’s Voice even through autism.”