Why After Autism?
What happened to life after birth?
Raised in a family with four sisters surrounded by plentiful amounts of estrogen cultivated a desire for motherhood at an early age. I knew on a visceral level someday, I would have two children.
During pregnancy, I often heard the message that my life would change dramatically after children so when the first week passed and I didn’t sleep, Ian didn’t nurse and he lost an alarming amount of weight I thought well, this must be what “Everyone” meant. It wasn’t until I had my second child that I realized how dramatically different the two experiences were.
The first year with Ian.
Lowell and I were first time parents without anything to compare. In my body though, I felt something was not quite right. In those first three months Ian didn’t express much other than discomfort. His first smile came at ten weeks and he finally giggled at twelve weeks. It was the most beautiful sound in the world.
I was fiercely committed to nursing and he had a rough time from the beginning. We worked as a team and he was determined to survive. I hired lactation consultants, pumped breast milk, and Lowell fed Ian with a syringe because he couldn’t suck hard enough to pull the milk down. Turned out Ian’s tongue was tightly attached to the bottom of his mouth making it impossible for him to stick his tongue out, which is an essential function required for breast feeding.
At eleven weeks of age when Ian’s pediatrician asked me to hold my sweet baby still, I didn’t know he was about to cut half an inch of tissue under his tongue without any pain medication! It happened so fast and I wanted to scream right along with Ian. My trust in his doctor shattered in that moment and I remember thinking, okay, that really, really sucked but maybe now Ian will nurse better and all our challenges will be solved. Oh, was I naïve and so, so wrong. Our challenges were just beginning.
When I repeatedly brought up my concerns with the doctor, I felt dismissed as a nervous, anxious first-time mom. I didn’t trust myself and I handed over my authority. As I look back, I realize my instinct was spot on and I knew perfectly well something was different.
By the time Ian reached six months of age I changed pediatricians and found one who listened to my concerns. Much of Ian’s first year of life is a blur to me due to exhaustion and overwhelm and I often thought what the hell did I want this for? I had a baby who cried constantly, slept poorly, didn’t like to be held for comfort, struggled to nurse, was in pain, suffered horrible reflux and the doctors didn’t seem to be responsive to my alarms. I was in survival mode and both my sweet baby and I were doing the very best we could. I had never felt this kind of love before. A love so strong it kept me alive and got me out of bed every time Ian needed me.
Hello seizures and here comes autism.
At eleven months of age, Ian had his first noticeable seizure. I suspect they began months earlier but I didn’t see them until this point. He stopped babbling at six months and had yet to speak a word by his first birthday.
Experts evaluated, poked and prodded him. They recommended several therapies, which we did faithfully. For the next two years, he proceeded to get sicker and sicker. At the lowest point he vomited many times a day. I counted over 25 times in one day. In the first two years I have photos of him smiling and connecting with us. He’s recorded on video responding with delight when Daddy returned home from work. Then in his third year, he lost his smile. He stopped connecting with us with his eyes. We were losing our boy.
D-Day (Diagnosis Day)
The day Ian received his diagnosis I took my mom with me to the neurologist’s office for support. Usually, I liked Ian’s neurologist. He took time to explain seizure medications, test results and answer my long list of questions. But on this day, I didn’t like him, not one bit because he turned to me and said, “I’m so sorry but all the signs are there and I believe Ian has autism.” I knew I shouldn’t hate the doctor (and for the record I don’t now) but in that moment I didn’t like anything about him because he dared to confirm what I already knew.
Ian continued to bang on the window and make his “ooooo” sounds. He didn’t appear fazed by the words even a tiny bit. Just me. I felt like the oxygen suddenly left the room and I struggled to breath. But goodness, I already knew he had autism. Why did it hit me so hard? Somehow, the act of him saying the words out loud made it real.
I looked at my mom and fought the tears. I didn’t want to lose it in his office. I’d have plenty of time to lose it soon enough.
I sank deeply into grief.
My emotions came in the form of sadness, guilt, anger, frustration, helplessness, isolation, loneliness, loss of freedom, stress, anxiety and at times overwhelming depression.
I needed help.
I reached out to a phenomenal psychotherapist. She helped me examine my thoughts and start to shift my perspective. This was my first step out of hell. I began to see flickers of light and discover hope.
Slowly, ever so slowly, acceptance started to replace the deep grief and suffering. It wasn’t enough though. I had a long way to go to dig my way out of my hole and my child needed me.
Nothing gets in the way of a determined mother on a mission to help her child.
I continued to search for help for my son. I was on a mission and passionate about finding ways to help him feel better and return to us. For three years I focused every ounce of my energy on him and his autism. I devoured books, spent hours and hours on Internet forums researching, learning, and escaping.
I disappeared. I became the obsessive mom searching for Ian’s cure, desperate and controlling. I also became Mom to my second son, Lane.
Lane, thank you for coming into our family. He woke me up, invited me out of my dungeon, and asked me to consider a different reality. He refused to be ignored. Lane’s mission is powerful and clear. His arrival helped accelerate the healing for our entire family.
Time to let go.
In Ian’s sixth year of life the shift started. I began to realize trying to control every aspect of Ian’s autism wasn’t working for me. I wanted to be more than Ian’s mom searching for a cure. Lane helped show me the way to the beginning of my path to joy. As I watched the two of them communicate with each other I woke up to the brilliant truth that my two children are my greatest teachers. I wasn’t supposed to control everything. I wasn’t only mom to them; I was also a student to their teachings.
My greatest teachers.
Ian was teaching me the most valuable lessons about communicating without words and even more importantly, how to listen beyond words. To this day he is preverbal, however he communicates so clearly with his behaviors, sounds, and energy and he recently began pointing. It is my responsibility to tune in to his frequency and he helps me every single day get more in tune and connected with his form of communication.
I’ve also learned that we all communicate beyond words. Quite often the words are meaningless compared to the gestures, tone, and energy projected by the person talking. What Lane teaches me is that, despite his use of very advanced language for a six year old, his words don’t convey the most important message. I now pay very close attention to his tone, his expression, and his energy to understand what he’s truly asking me to hear.
I embrace another way of being.
For the past two years I have been on my own personal journey to discover the purpose in my life and gain a deeper understanding of the teachings from my boys. I found my way out of hell with the help of many wise and inspirational individuals including Martha Beck, Koelle Simpson, and Byron Katie. In Ian’s ninth year of life I continue to look for ways to help him feel more comfortable in the body he’s been given and help him heal and recover. I continue to do my own personal work and when I feel stress and pain (which I still do) I examine my thoughts and go to inquiry. The answers are always there, within me, ready to empower me to find my joy again.
I no longer live a life without choices but rather the opposite; I live my life full of gratitude and appreciation for all the choices I do have in my life. I choose to illuminate the light and as a result, that is what expands. The darkness was not my answer. Only I know the right path for me and only Ian knows the right path for him. I recognize autism represents the mask that he wears, it’s the self that others see when they first meet him. But behind that mask of autism is a beautiful teacher, beautiful soul of pure love and a being that knows with clarity his purpose.
I’ve lived the life of loneliness, hopelessness, and disconnect and I’ve felt completely trapped by my son and his autism. Through my personal work, I’ve found my freedom and realized that it was not my circumstances but rather my thoughts about my circumstances that trapped me.
When I shifted my perspective, freedom appeared everywhere. I also learned that through reconnection with my self, there is an abundance of love and connection everywhere. I am full of gratitude for all the lessons I have learned from my son and how he has taught me to listen beyond words after autism.