Do you remember the film, Rain Man, with Dustin Hoffman and Tom Cruise? It was one of my first introductions to the world of autism. It won Dustin Hoffman an Academy Award for a very sensitive portrayal which still resonates with me.
We are currently on vacation at the Jersey Shore. Growing up in New Jersey, a Shore vacation was a mandatory right of passage. Since our daughter loves the ocean so much, we wanted to give her this. Breaks from school are hard for her: no structure, no activities, no organization. She doesn’t sleep, eats sporadically and engages in stereotypy far more than usual. For the past four years since she has been at school, I’ve struggled to create a fun, structured atmosphere for her. We thought a vacation at the beach with activities like swimming, visits to the park, walks on the Boardwalk, etc. would occupy her and make her happy. So we thought.
In the movie Rainman, Tom Cruise’s character, Charlie Babbitt, after a cross-country trek with his autistic older brother Raymond (Dustin Hoffman) wants to live with him as a family. They created a bond and grew to truly love each other. But Raymond wants to go back to the familiar Walbrook Institution, where he has been living for years. He needs his familiar surroundings and structure. Without it, he is lost.
That is what we discovered with our daughter. We try to give her this amazing experience of staying by the beach on a carefree vacation and it is so foreign and unsettling to her, she asked to go home after the third day. “WHITE HOUSE, YES!” she ordered. I looked at her with tears in my eyes. I was so tired, so frustrated that I tried to create a lovely experience for her, which I think she enjoyed, but she still wants to go home to our white house to her bed, her toys, her food, her surroundings.
I started to cry after she asked me a fifth time. She looked at me and said, “NO, Mommy! HAPPY!” She smiled. She did not want to see me upset. I weakly smiled and she barked again, “White house, YES!” I tried to distract her with food careful not to say “no”. The word “no” triggers an all-out tantrum compete with self-injury. Later, I went to the supermarket and bought her a toy to compensate for my inability to grant her request. I would have taken her home, but we are having construction done on our house and we can’t return until it is completed!
I know all kids love their creature comforts. All kids can be addicted to routine. My younger child who is neurotypical is having a blast at the beach and has not asked to go home once! She loves the thrill of doing new things, the opposite of her sister. My husband and I always strive to make our older daughter happy. We know her life is challenging. We know it will not be easy. So we spend money a do anything we can to make her smile or make her life more enjoyable. All parents do that for their children, but it has become our life’s mission because we know her adulthood will not be full of opportunity like ours.
So we remain at the beach, hopeful she will bear four more days until we go back to the white house.