In the Fall of 2002, I found out I was pregnant with my first child. I was elated and spent the entire pregnancy planning and preparing for the next 18 years of my new son’s life – unaware that none of those plans would come to fruition. After three long years of medical issues, unmet milestones and a lengthy waiting list for a qualified medical opinion, my son Skyler was diagnosed with severe autism. My heart shattered into a million pieces the day I heard the word autism for the first time and it has altered the way my entire family has navigated through the world ever since.
When I received Skyler’s diagnosis, I was initially furious at myself, thinking this was somehow my fault, because I had carried him in my body. However, my overwhelming frustration and anger then shifted to blaming God. How could he punish me in this way? I’ve always been a thoughtful and generous person who put others before myself and withstood my own painful childhood growing up the child of an absentee, alcoholic father. Why then would He bless other parents with perfectly healthy children and provide me with this incredibly cruel challenge of raising an imperfect child? I carried on with these beliefs for several years, but despite losing my faith in God and becoming a divorced mother of two a few years post diagnosis, I remained steadfast in believing “everything happens for a reason.” As time passed by and I navigated my way through Skyler’s seizures, therapies, medications and behavior plans, little did I expect that divine intervention would bring my future husband, Josh into our lives at a time my family needed him most.
The new relationship with my husband Josh progressed easily. Aside from the many amazing qualities Josh possesses, I fell completely in love with him while watching him interact with my kids. About a year into our relationship, Josh proposed and our wedding occurred a little over a year after that. Both of my children acted as an integral part of the festivities – walking me down the aisle and participating in the unity sand ceremony. Skyler even entertained the crowd with his partner dancing with Josh and me at the reception. Josh has expressed so much love for both kids and has been their biggest cheerleader and supporter – wanting to be involved in everything, like an amazing bonus dad should. He has been a very hands on dad, particularly with Skyler who’s severe, non-verbal autism requires the 24/7 attention of both parents to meet his every need.
Over his lifetime, Skyler has struggled to achieve most tasks (i.e. walking, eating independently, dressing himself) without significant intervention. He has been exposed to practically every treatment idea, therapy and medical intervention available with little benefit identified from each one. Now 17-years-old, Skyler receives Applied Behavioral Analysis (ABA) therapy 40 hours a week and we’ve recently begun a Spelling to Communicate program at home with the hopes of identifying a method of communication that will resonate with him. I recognize that I may never actually hear his voice, but encouraging him to make requests by pointing to specific objects or letters on a board could relieve a bit of his frustration and perhaps some of the devastation we feel as parents when we are forced to constantly guess his wants and needs.
From the moment our lives connected, Josh’s deeply thoughtful perspective and highly spiritual outlook really forced me to do some serious soul searching about my misdirected anger for Skyler’s diagnosis. I recognize that fully accepting and understanding the significance of why my child was diagnosed with this confusing and incurable disorder is something that could take a lifetime. Or it’s quite possible that I never will truly gain the meaning behind the bigger picture. Over the past ten years, I’ve grown considerably in my faith. I now firmly believe that God is using Skyler as a vessel to teach me, and possibly everyone he comes in contact with, some valuable life lessons – patience, gratitude and perhaps an antidote to our societal obsession with perfection. The amount of trust He bestowed on me to raise Skyler with an open mind and unconditional love no longer goes unappreciated. Skyler’s determination is unsurpassed and consistently teaches us how to find enjoyment and love in the simplest things.
There is absolutely no doubt that loving and caring for Skyler is the hardest job I’ve ever done, but I wouldn’t trade my life for anyone else’s. I could easily dwell on the hardships we face, but that only brings a negative energy around all of us and defeats my purpose of living a fulfilling life with a grateful heart. My love for Skyler knows no bounds and while autism presents various challenges for how he lives day to day, it does not define who Skyler is.
A diagnosis is not a personality or a heart, nor is it a box in which my son is trapped. Being autistic does not devalue or diminish his contributions to this world. I love Skyler because he made me a mother for the first time. Although he can’t verbalize the words “Mom” or “I love you,” I know just by the way he looks at me and kisses me on the cheek each night before bed that he is aware of who I am and loves me, too.
Skyler teaches me to be brave, strong and courageous. He’s taught me that when I’m tired and feel like giving up, I can keep going. He’s also taught me that there are other means of communication beyond speaking. He has taught me to look and listen and to trust my gut.
I love Skyler for always being patient with me as I learn what he needs and work to understand his forms of communication.
I love Skyler for his view of the world and for seeing and hearing things most people probably do not.
I love Skyler for never holding back his emotions and for having the most amazing, deep belly laugh I’ve ever heard. Although it can be extremely frustrating for all of us to correctly identify his feelings of love, anger, happiness, pain and sadness, he never gives up trying to communicate with us.
I love Skyler and his love for Sesame Street, for nearly every kind of music, for Qdoba burrito bowls, bun-less cheeseburgers, macaroni and cheese, wrestling with Josh, and his ability to negotiate with only his eyes.
I love Skyler because he is true to himself and because every single day is the best day of his life.
I love Skyler because he works extremely hard to be part of a world that makes no sense to him and often misunderstands and judges him unfairly.
I love Skyler exactly how God made him and I hope that I love him exactly how he needs me to.
Having a child with severe autism hasn’t made me a different parent, but perhaps it’s made me a more purposeful one. Autism doesn’t alter the way I love my son, nor does it force me to love him differently from how I love my daughter, Kendall. Autism is a part of my family’s journey, and it forever will be.
A long time ago, I accepted that my family does not fit into that “ordinary” mold. We do what we can to get through every challenge and find the beauty in autism, and the beauty in our special family. It is our daily mission to ensure that autism does not stifle any of our dreams. We keep dreaming and striving and laughing and showing up every single day.
Our attempt at normalcy and happiness, as we define it, is not diminished. I’m proud of the family we have become — our tenacity and our silliness, our devotion to one another, and our “no excuses” approach to life. I’m proud of Kendall for her big heart, her maturity and her intuitive nature. I am proud of Skyler for being brave and dancing to the music, come what may.
As for me, I’m learning to be a willing and enthusiastic tour guide on this life’s journey. As time has passed and autism families and experts have found one another, the road has become less lonely. But it’s not always easy. I realize there will forever be countless battles to fight and ignorance about the disorder to overcome, but I’m up for the challenge. And, in the end, it’s not about me. I’m not just a warrior mom; we are a warrior family.
As I look back, I knew my life had purpose before Skyler was born. But now I truly know what I’ve been put on this earth to do. I am the mother of two amazing children, one of whom happens to have autism. And I love them. I will never stop pushing both of my children to be their very best — cheering for them, advocating for them, supporting them and giving every ounce of my effort to ensure their safety, health and happiness. Skyler and Kendall are my purpose.
This is my life. And it’s beautiful beyond anything I could have ever dreamed.
*As published on 10/6/2020 for LoveWhatMatters.com