“Kya Alexandra Dunn was born on April 6, 2010. She was beautiful. The first couple of months were as typical as life could be for a first-time mom. She ate, slept, pooped and I watched her every breath in awe. I had been pregnant at the same time as two other friends. Their kids were a lot of work. Mine was more than content in her Exersaucer for hours. Initially, I thought I had hit the lottery, my daughter was so content. However, over time, I began to get a gut feeling perhaps it wasn’t luck and something wasn’t quite right.
Kya needed nothing from me other than food and a diaper change. That slight concern soon turned into something I couldn’t shake. I continued to look around at my friends’ lives. Their kids her age were developing and for us, time was standing still. There was no longer any denying it. Something was going on and it was beginning to affect her more and more. On February 22, 2012, Kya was diagnosed with Autism Spectrum Disorder and our lives were forever changed.
As a parent, you have hopes and dreams for your children. Autism changed those dreams overnight. Autism stole my dreams, it stole a part of me, and it continues to steal normalcy from us every day. As I sat there hearing the words, being forced to accept this would-be life they called Autism, a flood of emotions washed over me. My mind could not handle the thoughts as they crept in one by one and took my hope as they left. My body went numb as I sat there, completely unaware of the room around me. I fell into a hole. Then it hit me. I had a job to do. I had a little girl looking back at me and she needed me. As the fog slowly began to clear, I was tasked to understand and accept the diagnosis.
I grieved the loss of a child, more so the loss of who I thought that child would one day be, as she was standing before me. Deciding where to go to college, where she would attend while she learned to take on the world was replaced with the stunning realization: I would instead be picking an assisted living facility to care for her. I was numb. My fears were not for her future in the sense of having a job, a relationship, or a baby, but her future when I am no longer here to provide for her or to protect her.
My daughter has zero sense of danger. Kya would run directly into oncoming traffic without the understanding she could be hurt. This meant major changes in our home. Fort Knox had nothing on the security system in my home. Despite the security that surrounds us, I always fear something will happen to her. She is rarely out of my sight and yet, I never relax or feel content knowing she is safe. However, these fears pale in comparison to thinking one day, I will no longer be with Kya. No parent wants to think of this, but they plan just in case. Where will she live when I die, will she understand I am gone—not by my own will—or will she think I have left her? I am her network. I am her sole provider. It’s just the two of us. Writing those words makes me breathe heavy and gives me a sinking feeling in my stomach.
One day, I will be gone. And then what? Who will tell her I am gone? Where will she go? Where will she live? Who will make sure she is safe? Who will make sure she isn’t physically or sexually abused? These questions make most people uncomfortable. They do worse to me. They terrify me because it is my reality. This is what consumes me.
How can it not? Kya is my daughter. She is my everything. And I am everything to her and for her, until the day I die. Instead of starting a college fund, I had the task of setting up a disability fund for my child to access when she turns 65. This is not for a home or car, but so she will have money to live in a ‘good’ group home. Yes, you read that correctly. My wish for my child is she will have a good group home once I am gone.
I tell our story so others can understand. Understand when I politely decline to join them. Understand I want to join them for dinner but sometimes, I’m not strong enough to hear about how busy they are going from dance class to softball practice with your kids after spending my day driving from therapist to medical centers. Understand I meant to call you back, but Kya had a meltdown, and I was trying to safely restrain her from pulling handfuls of my hair out. I worry about my child just as you do, only I know my need to protect my child will not end at 18. I know she will need me long after I am gone—and I am working to secure her future.
Along with the diagnosis comes loneliness and complete isolation. People stop inviting you places, and you stop wanting to go. Not that you want to face the task of leaving the comfort and literal safety of your own home. The phone rings a little less as time goes on and you become detached from what was formally your life.
My fears consume me, and they have taken over my life. But what I go through daily pales in comparison to the challenges Kya faces. Nothing has been easy for her. Things like speaking and eating should be a given, right? They were not. Kya spoke her first real unprompted or scripted words at 5 and chewed and swallowed her first solid foods at 8. Can you imagine never knowing if you would hear your child’s voice? It is an underlying pain deep in your soul. Kya went through years of speech therapy with the most dedicated speech-language pathologist.
A profound moment was when her therapist looked at me and said, ‘You MUST put the work in at home. I can only do so much.’ I was resentful. I wanted Kya’s time to be filled with Disney Princess dresses, dancing through the living room singing along with her movies. Instead, it would be filled week after week with linguistic drills and tears of frustration not being able to communicate what she needed to tell me. I felt hopeless, unable to know the needs of my child. Until bubbles.
At 5, Kya said, ‘Bubbles!’ I jumped and down. You would have thought I won a million dollars at the sound of her voice. For 5 long years, I waited to hear her say, ‘Mama.’ I never dreamed bubbles would come first, but it was her voice. She could have uttered any word and I would have been an emotional mess. Kya began speaking more and more. She also began school. I was a first-time mom but also a first-time special needs mom. I was leaving my child in the hands of strangers. My daughter was still nonverbal. How would I protect her? With all the challenges and fears school brought, I was not prepared for what happened in fourth grade.
Kya’s anxiety had become debilitating. I needed to help her. Medicating my child to make it through the day at school was never something I anticipated. Autism seems to enhance this and led us down a path I can only describe as shattering.
Kya became erratic. She would scream so loud and long it would rock me to the core. It got progressively worse. Her aggression returned with a vengeance. The months ahead were nothing short of a living hell for both of us. We were in survival mode and barely hanging on. I was desperate. I got her in the car and drove straight to Children’s Hospital. I walked into the emergency room and literally dropped to my knees, sobbing, and begging for someone to help my daughter. The intake receptionist was so kind. She handed me a box of Kleenex and just let me sob. They evaluated her, increased her medications, and sent us on our way.
What came next was the worst day of my life. Kya erupted. She knocked over my glass and it shattered. Tears built in my eyes. This was not supposed to be happening anymore. As I knelt on the floor cleaning up the glass, she came out of nowhere. She kicked me in my face, grabbed me by my hair, and this tiny child had enough rage in her that she dragged me across the kitchen floor.
It was time to take her off medication. A pediatric psychiatrist reviewed her chart and began a plan to temper her off her medication. One medication at a time. As each one was out of her system, she was more and more herself and less aggressive. I had hope. For the first time in years, I had hope.
As this was happening, her pediatrician noted how underweight she was, and the word malnutrition was mentioned. Why did Kya have another mountain to climb? I was tired of climbing, I wanted to live in the moment of hope.
At 8 years old Kya was not eating solid foods. She was surviving on baby food pouches. You could see every bone in her back. Kya needed help. Enter the feeding clinic. It was a 9-day intense intervention, at a cost of $10,000. Kya needed nutrition, she needed something other than baby food to sustain her growing body. I maxed out my credit cards and took the leap. They asked me prior to the intervention to make a wish list of foods for her to eat. I did not know where to begin. It was then I realized how out of touch I was with normalcy. I couldn’t even begin to think of foods typical kids would eat. Kya worked so hard and all her efforts were eventually rewarded. She came out eating a large variety of foods. My daughter was eating foods, real foods.
Each day brings new challenges. But this kid leads the way. Her perseverance is inspiring. I watch her speak, I watch her eat and I’m given hope. Autism has changed me. I have found a strength I didn’t know I had. My dreams of the life I thought we would have are gone but we are making new dreams. I don’t know what the future holds but whatever direction it takes us I will let her lead the way.”
This story was submitted to Love What Matters by Jennifer Dunn of Vancouver, British Columbia. You can follow her journey on Instagram, Facebook, and her website. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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