Our family loves Disney so much that we belong to the Disney Vacation Club and visit Disney World every 1 to 2 years. One of our favorite routines is to have a late lunch at Tony’s Restaurant in the Magic Kingdom and time the lunch so we can watch the afternoon parade from our table. I will never forget one particular visit that occurred three years ago. We had been seated in our requested section, placed our orders and began discussing what we were going to do next and in what order: Space Mountain then the Buzz Lightyear ride and then walk towards the other end of the park and hit Thunder Mountain and Splash Mountain. At one point, I looked over to another table and noticed a young boy who looked to be 11 or 12 years old. He was rocking slowly back and forth and flapping his hands. His head was down and I knew in a split second what I was witnessing −Autism. I looked at the family and the mother was facing the young boy and leaning into him. She had a protective look to her and was speaking in soft hushed tones. A man and an older boy, perhaps 14 or 15, sat at the table too. I assumed this was the father and the older brother and I watched as the father faced the older brother talking and the two were absorbed into each other. Here was a family like many others but with Autism, smack in the middle of their life.

The father focused on the older son while the mother behaved protectively towards the younger, afflicted boy. I wondered if this was their typical routine –mother tends to the special needs child, while the father focuses on the typical one. It is easier you know, focusing on the “typical” child.  Our “typical” children’s needs, problems are so normal compared to the child with Autism. The typical child speaks, gives you love back, engages in activities that you understand, make sense, aren’t embarrassing…ok, they can have their embarrassing moments too, but their outbursts and “moments” are understood by parents so you often get the smile, nod and the occasional comment of “gee I thought I was the only mom whose child behaved that way!” You are part of the Parenthood Club and it feels good. Our typical kids have issues that range from persistently messy rooms, missed homework, a bad grade here and there, but we parent by remembering how our parents raised us when we behaved this way. We either draw from that rulebook or replicate something that we have read or how an admired parent we know handles similar situations. But Autism…where is that rulebook?

My eyes wander back to the mother of this boy; she notices my stare. I smile and turn my gaze to my then 7-year-old daughter who is sitting next to me and flapping −Autism.  The mother notices and looks intently into my eyes, a shared bond, an understanding without any words. In a flash, I see her eyes change and her head turn away as my daughter begins chatting, eating her lunch with her knife and fork, making eye contact, placing her dessert order independently and with appropriate enthusiasm to our restaurant server. My daughter is very high functioning compared to the boy at the other table. She is very verbal, goes to mainstream school, takes piano lessons and horseback lessons, wants to be an actress, has friends and, most important to me, she tells me that she loves me. I am blessed.

The Autism world is a special and unique world that defies your sense of normal. Children on the Autism spectrum look normal. They are beautiful, have no external physical deformities, but often their behavior is so odd that they are socially challenged and can have trouble engaging on any level of normalcy. They draw curious, constant and puzzled attention to themselves. I have witnessed behavior that ranges from swaying, loud humming, flapping of hands, screaming, running, scratching and mouthing textures, and lining toys up over and over. For those who are verbal, I have seen children incessantly speak about a topic with depth and detail that leaves one with the impression that he or she is capable, but when you present the child with another topic frustration, anxiety or potential outbursts take over. Some children with Autism will never speak, some engage in “ism’s” that are so odd you struggle to find the desire to engage with the child. Some children with Autism are so violent that you cannot expose them to the outside world with any degree of frequency and the parent’s world becomes perverse. Perverse. No one expects that when they get the news that they are pregnant, when they hold their child for the first time or when they pick out the nursery furniture. Who plans for perverse?

My daughter’s journey out of the debilitating affliction called Autism is an amazing story but I believe our greatest gift is how we have grown as a family and candidly, how I have matured as a human. My daughter has taught me what work ethic really is as I watched her day after day fight through the fog of Autism, fight her desire to be exclusive, fight the struggle of learning how to speak. What is natural to us −simple inferences that we pick up −must be taught at the most granular level to her with constant repetition until it becomes ingrained, learned and then natural, fluent and finally, second nature. I can’t look at success the same way ever again. I work in a Fortune 100 company. I am surrounded by some of the brightest people in the United States –some could argue the world –and nothing that I see during my work-day could ever be as impressive or successful as watching my daughter introduce herself to people, ask questions, engage in a conversation, get a 100 on her spelling test, order dessert in a restaurant and tell me that she knows she has to stop the flapping so that she can drive a car one day. I have changed from wondering what I did to deserve a child on the Autism Spectrum to being grateful that I have a child on the Autism Spectrum.

I often think of that family at Tony’s restaurant in Disney World. How is the mother doing? Does the father engage with his son on the autism spectrum? Does the son speak? Will he be able to live on his own? Did the mother want more aggressive therapy for her son and her husband said no? Did they try everything they could and their son just didn’t respond? Did they believe what the professionals said would be their son’s outcome?  What is their story? Is there life glorious, blessed or perverse.

I have my own questions. Why did my daughter respond to her therapy? Why did she prove the professionals wrong about her ability and future? I don’t know. I really don’t. I suspect she worked extra hard for me because somehow she sensed that I needed it more than she did. As parents, we are supposed to teach our kids, raise them to be productive humans, but in my case my daughter and her Autism taught me, raised me and humbled me. Autism has been my life’s gift.

Stephanie Watkins Bush

Stephanie lives in Connecticut with her husband and two beautiful and bright daughters.

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