Today is World Autism Day. Every day for us is autism day.
Autism is just one of the many ICD-9s that accompany my son’s medical chart. At last count he had 15.
Wesley was born in October of 2001. Despite multiple ultrasounds by several physicians, I had no idea he would be born any way other than a healthy baby boy until the moment of his birth. How I wish I could say otherwise. Sometimes I wish my story included the part where the amniocentesis came back abnormal but I gave a war cry, pounded my chest and said, “I can do this!”
But God and Wesley held the secret for 37 weeks. Laying on the operating room table I knew something was not quite right. His cry was so quiet. The nurses were somber. No one congratulated me until his dad brought him over.
He said, “Here is our son. He has some anomalies and the geneticist will see him in the morning. Isn’t he beautiful?”
An intense, sudden state of panic overwhelmed me. Joy, excitement, fear, and sadness swirled in my soul and each feeling was indistinguishable in the tornado of such a moment. The human spirit is not meant nor equipped to feel so many emotions at once.
Three weeks later we took Wesley to Omaha, Nebraska to see the geneticist there. As we drove I began bargaining with a God I had barely spoken to over the last ten years. I wasn’t even sure He would remember who I was. I begged Him anyway. Please. It can be anything. Just let me keep my son.
After examining my sweet boy the geneticist sat down with a large text book. He flipped open the page and pointed to a picture.
“We believe your son has Rubinstein-Taybi Syndrome,” he bagan.
The tornado descended once again. I became dizzy. I interrupted.
“Will he be mentally retarded?” I asked.
“I don’t like to label kids,” the geneticist replied. “If you expect him to be a typical child with RTS he will very likely become a typical child with RTS.”
He could see the pleading in my eyes.
“But yes. He will have mental retardation.”
I excused myself to the restroom. Locking the door behind me I collapsed, sobbing on the unforgiving concrete floor.
How I wish I could go back in time and speak with all the knowledge I have accumulated over the last 19 years to that young mom crying. I would say…
Don’t be afraid. You will figure out how to mother this child and he will teach you more than anyone else will without ever saying a word. You will have to fight for him. You will be his voice and he will be your heart. He is going to teach you to love unconditionally with no expectation. He will show you the meaning of perseverance and you’ll learn to take nothing for granted. You will be exhausted right down to your very soul. You will stumble. You will fail. You will get back up and try again because he will need you to. His life is every bit as valuable as everyone else. You will learn to have empathy and compassion for others deemed “less than” in society. Use your voice and use it loudly when need be. You will be a better mother, daughter, and friend because your son was born this way. Life will be amplified from this day on. The highs will be higher but the lows will be lower. This isn’t the day your world ended . This is the day you begin to become who you were meant to be. You will reconnect with your old friend and God will lead, support, and direct you for the rest of your days. Grieve because you have lost a significant dream. But then get up. Dust yourself off. We have work to do.
Autism is not the end of the world but merely a transition into a different one. It is vibrant here. It is silly. It doesn’t make sense to me much of the time but does to my sweet son. This world is challenging. It is rewarding. It is exhausting and so exhilarating. I am a vastly better person for residing here. And after 19 years as a resident, I would have it no other way.