An excellent documentary is Autism: The Musical. What better time to mention this film than Autism Awareness Month? This film follows five children, all with a diagnosis somewhere on the autism spectrum. These five children, along with other local children, are working with the Miracle Project, a musical theater program led by Elaine Hall (mother of one of the children featured in the documentary). The most powerful parts of the film are the narratives from these five families. These perspectives enrich your understanding of not only autism, but what it is like to parent a child with a disability, which is a personal interest of mine.
Every single time I watch this film, I am drawn to the story of Lexi, a middle school girl with autism. Lexi has a beautiful singing voice and a gorgeous smile. Her mother, Hillary, is open and honest about her own struggle accepting the diagnosis of autism. I am brought to tears by her story because I can see elements of myself in her story. At one point in the film, Hillary talks about how Lexi's father once told her, "It's not up to us to judge the quality of [Lexi's] life." To that, Hillary readily admits "I find that a challenge." I know this struggle. My adult life has focused on the concepts of accomplishment and excelling. It is very difficult for me to think about what Quinn's future may hold and how her life may be radically different. I try to either stay in denial or think positively about this subject, but doubts still seep in. Even when I have expressed these feelings to other parents of children with special needs, I have at times felt judged. But I have to go back to Hillary to remind myself that there is nothing wrong with these feelings. Everyone who is on this journey is unique and goes at their own pace, just like our children. Hillary's bravery in openly discussing her feelings brings comfort to me. Thank you, Hillary!
Other powerful moments in the film exist in the portions showing the experiences of these five children. Wyatt, a young boy who is often troubled by bullies, talks about what it is like to go into his "own world." This gives us an unique perspective that isn't often shared. Another powerful moment again involves Lexi. Hillary asks Lexi what is autism. Lexi, who at the time is using the computer to help express herself, types: "Autism is something that is damaged." Imagine having this view about yourself. Imagine the look on Hillary's face when Lexi said this. This is pain like no other. Considering the societal messages we receive about what is acceptable and "normal," this is not surprising. Sad, but not surprising.
Listen to Lexi yourself. This is her message to the viewers (found in the companion guide of the dvd): "My favorite subject at school is reading, math, science, and lunch. How are you doing? I had a wonderful time in the Miracle Project. I sang 'Miracles.' I like to dance. I like to sing. I like to go to the coffee store, the beach and I like to go to Ronnie's to drink Sprite, eat a jack and cheddar omelet, black beans, side of chips, toast and then I'm full. When I am a grown-up, in the future, I will be a teenager, I would become a woman and I would be like Britney Spears."
While Lexi's mother tells me that it is ok to sometimes have difficult feelings about Quinn's diagnosis, Lexi shows me that I have to accept Quinn for who she is and see the beauty she possesses. Both are ok.
This blog is about our journey raising three bright, gorgeous kids (Riley, Aidan, and Quinn). Miss Quinny happens to have an extra 21st chromosome (Down syndrome) along with Infantile Spasms (West syndrome) and Stereotypic Movement Disorder. This blog is for awareness and advocacy for families with children with special needs.