Sometimes it hits me when I least expect it. I was sitting in front of my computer reading my son’s high school athletic face book group post. “Any parent of a boy or girl in grades 3-6 interested in volunteering as a water boy/girl for the varsity football team, please respond.” So I went to that imaginary place in my mind. I pictured my daughter on the sidelines holding the rack of water bottles proudly watching her brother and his teammates play football. She smiled excitedly as the whistle blew and the boys all came to the sidelines for water. My son took his water bottle and smiled down at her. She handed it to him beaming with pride and excitement. Then reality hit me. My daughter is severely autistic. She could never do the job of a water girl. She would get confused and overwhelmed at the noise and excitement. She would start stimming and crying and I’d have to rush her off to the quiet car like I’ve done before too many times to count.
The harsh reality of life with autism often sends me down a rabbit hole of sadness. I escape by going to that place in my dreams where I see dance recitals and birthday parties. I imagine the long talks we would have over ice cream sundaes. I dream of watching her exchange secrets with her girlfriends. I envision us shopping for prom dresses. I see her dancing with her dad on her wedding day. In my dreams there is no pain or crying, no anxiety, no challenging behaviors, no IEPs, no psychological evaluations, no picking her skin until it bleeds, no countless hours of research trying to find new ways to help her, no pit in my stomach as I see her spend years struggling to do things that come easily to others, no restless nights spent wondering what will happen to her after I die.
I know I’m not the only one who dreams of a better life in this upside-down world where autism spills into every crevice. Many special needs parents feel the same. How can we deal with life the way it is and stop grieving over a life that will never be? The short answer to that question is that I can’t stop feeling sad completely. These emotions are normal. But I can try to rise above these nonproductive feelings and be happy most of the time. And after nine years of life with autism, I’m getting better and better at it.
Our sweet Anna is a blessing! She makes us all better as we try to communicate with her on her level. My sons make crazy noises and sing obnoxiously. She laughs hysterically. In her eyes, the sun rises and sets with her big brothers. They don’t give her challenges much thought! To them she’s the silly little sister they come home to every day. My oldest daughter was nine years old when Anna was born so she was the little “mama” who showered her baby sister with love from the day we brought her home and that hasn’t stopped since. They sing songs together and Anna listens to her big sis play songs for her on the piano and guitar. Anna has a sweet, angelic singing voice. My heart smiles when I hear them both singing together.
Anna loves to bake with me at home and her teachers at school on baking day. We make cookies, breads, and muffins. She loves to look at pictures in cookbooks and watch cooking videos. I dream that someday she’ll get more and more independent and learn to bake treats on her own. We’ll open up a small baking business with a fun, creative name. She’ll have a job and we can work together.
Her teachers and therapists tell me how much fun she is and how they love working with her every day. I love hearing their progress reports. They get so excited when she learns a new skill. They often walk her out to me giggling like schoolgirls at her quirky, repetitive phrases and songs, and even the occasional swear word.
Anna and her dad get carryout burgers and fries every Saturday. She talks about it all day long. It’s her favorite part of the weekend. She loves watching movies with him and even takes a slight interest in the football games! She brings out the gentile, playful side to him. He knows that most 12-year-old girls don’t get silly with their dads anymore, but he doesn’t care about what’s typical. Our family is not “typical” and that’s just fine.
The life we live with Anna is nothing like the life I see in my dreams, but I’ve come to learn that not everything is the way we imagine. I realize now that her happiness is what matters most. And I’ll never stop searching for the means to make sure that her happy times outweigh her struggles.
I’m sure I will continue to wander into my imaginary dream life once in a while, but I won’t stay there for very long. Because if I do, I might just miss out on a real life that’s pretty special!