by Jerika L.H.
Last week, I accompanied two friends to the movies to see The Witch. As the opening credits began to roll, two women and a child in what appeared to be a wheelchair came in and found a seat to the right of us on the ground level.
She turned the wheelchair to face the wall opposite the movie screen and gave her son some blankets and stuffed animals. Seconds later, the child began to let out an intermittent, light moan and rock back and forth, which indicated that the child was special needs.
About 10 minutes into the film, a woman in the upper rows shushed the child as he was moaning. About two minutes later, she shushed him again and the man she was with said, “Can you please quiet your kid?”
The mother didn’t respond and everyone went back to watching the film for another 15 minutes. When the child went back to lightly moaning, the woman went down the row to where the two women and child were seating and semi-whispered, “Excuse me but the noises are very distracting. This is a theater and we are trying to watch a movie.”
The mother responded loud enough for everyone to hear, “I’m sorry but my child is special needs! We have every right to be here.” The woman quipped back, “I’m not saying you don’t have a right to be here but, come on. You’re not being very courteous.” The mother was not going to back down.
“Courteous? You are the one who shushed an autistic child and are now talking during the film, distracting everyone else.” The woman’s husband came down to defend her. “This isn’t a kid’s movie! Take your kid home! He’s scared. That’s abuse!”
The mother retorted. “I’m the mother, that is up to me. You don’t know my child, please don’t tell me what is best for him. He is not in view of the screen and is fine. He moans because he is autistic.”
The man responded, “So what if he can’t see the screen, even the music is scary. Autistic kids are sensitive to that.”
By that time, someone had notified the theater staff and the lights in the theater turned on. An employee walked in and stood by the entrance ramp as the couple went back to their seat. The mother was noticeably upset and was being consoled by her friend. She lasted only another minute or two before gathering her things and leaving. The lights resumed and we all went back to watching the film.
As soon as it ended, I was surprised to find that my two friends were quite polarized by the issue.
One remarked that “the guy was right… it’s not a kid’s movie. And it was impossible to hear or concentrate while he was moaning.” At the same time, the other said, “They were just using that as an excuse to make them leave. The child can’t help it, the family lives with that every day. If you have to be inconvenienced for 120 minutes, then so be it. Just tune it out. It’s about inclusion.”
As we exited the theater and dumped our trash, the mother and her two companions were standing at the corner, as if to invite anyone to confront her if they felt they needed to. She had obviously been crying. My friend commented to her, “I’m so sorry! That was so horrible. You should have stayed.”
With a few tears escaping she said, “Yeah, it’s really hard. People are so ignorant.” She divulged to us that this was her first child and she dedicated every minute of her day to taking care of him.
She also told us that he was hearing impaired, did not have his hearing aid in and is soothed by the dim lighting of the theater. He moans constantly as a comfort and it does not indicate that he is scared or overstimulated.
She described him as very low functioning and the light of her life. She said that the most exhaustive part of taking care of a special needs child is not the 24-hour care, it is dealing with public misconceptions.
Ironically, March is developmental disabilities awareness month. This issue raises a number of questions about social attitudes regarding developmental disorders and the popular belief that it is the parent’s job to discipline when a child expresses behavior that might seem disruptive, but is actually quite normative for autism.
In fact, in a recent study of special needs families, parents admitted that the main stressor in living with a disabled child was public judgment, followed second by financial burden.
Although Davis is commonly known as a progressive and accepting place, many families experience the dirty looks and snickers as they are out and about with their special needs child.
Arnetta V. has an autistic nine-year-old son. She says snide comments and cold shoulders have just become a part of daily life. She describes, “Just the other day, we were walking up to the Dos Coyotes on Covell. My son was upset because he wanted to go into the PetSmart first.
“When he gets mad, he has learned from his aide worker to sit down and put his head in his arms and count. This is a long, long way from the tantrums he used to throw, where he would punch me and scream. Anyway, I just let him be as I was told to do.
“He was a few feet away from me and I heard a woman who was leaving Dos Coyotes say, ‘What kind of parent lets their kid sit on the filthy floor? Geez, dumbass people really need to stop having kids when they don’t know what the f*** they’re doing.'”
She says she used to confront people, but has just learned to try and let it go because her son can sense the unpleasant energy and feels scared and unsafe.
Her plea to the public is a request for empathy. “Honestly, no one can know what families of autistic children go through until you have lived a day in our shoes. It is a daily battle… So, if you see a child acting out or having an episode, please, please, before you judge just consider that the child may be special needs. It is not always an obvious impairment. Automatically give them the benefit of the doubt that maybe this child is autistic and the mother or father is actually doing overtime parenting instead of being neglectful and careless. People need to learn that it’s not always what meets the eye. I mean, you wouldn’t punish your child if they had an epileptic seizure, so why would I punish my autistic son for having an over sensory episode?”
Hurtful comments and bashing remains a continued problem for special needs individuals and their families. Awareness is the only effective tool in combating the stigma. That is why Amy Ezaki from Autism Awareness Association of Davis encourages more people to get involved and take the pledge to stop the use of the R-word. In the service of awareness, they often hold tabling campaigns on campus to “Spread the Word to End the Word.”
“I [also] encourage people to become more educated about the Autism Spectrum, not just because I love full Autism Awareness Association meetings, but because the more information one has, the better one can understand and interact with individuals with Autism. I would encourage those interested to seek out volunteer opportunities. No matter one’s skill set, there is always a way to help.
“At the Davis Autism Awareness Association bi-monthly meetings, we cover different topics such as the overstimulation. We have also given an overview of the spectrum, welcomed guest speakers, discussed topics such as Autism in adulthood, sensory sensitivities common in individuals with Autism, how to be mindful and considerate of those on the spectrum.
“Because we are an awareness organization, we make sure we provide information about the spectrum at each meeting along with relevant crafts, games, and volunteer and internship opportunities.”
Ezaki cites Team Davis as another excellent resource, a volunteer-led nonprofit that helps build bonds and diminish rifts between developmentally disabled locals and the community. At Team Davis, participants are able to take part in the Special Olympics, art and nutritional classes, and a slew of other fun social, athletic and educational activities.
The annual Autism Awareness Fun Run will take place May 14 at the UC Davis West Quad, and, along with being a lively get together, is another way to spread awareness. While local families are impatiently awaiting this year’s run, some great strides are currently being made across the causeway at the Roseville Theatre Arts Academy.
In conjunction with the UC Davis MIND Institute and Constellation Theater, the Roseville Theater Arts Academy hosts annual performances that feature both autistic and typically developing children.
Founder and UC Davis Pediatrics resident Samantha Auman explains, “Constellation Theater is a free and not for profit group who matches children with autism and other developmental delays with typically developing buddies to rehearse and perform musical theater productions. The goal of our project is to create a safe place for all of the children to grow. We hope to build social skill and self esteem in the children with autism and skills to become advocates in the typically developing children. This is our second year and second show so far but we plan to continue this project for many years to come. “
Auman has witnessed first hand the ways that musical theater has helped children who are both typically developing and those with developmental disorders. With 15 years of experience working with autistic children under her belt, she recognizes that isolation and exclusion are a huge problem in the developmentally disabled community.
Her efforts in bringing people together under the banner of theater helps chip away at barriers. March 4, 2016, marked the second year in a row the theater put on their ‘Dragon The Line’ Performance.
“I think that diversity makes all of us stronger. Each one of my actors, whether they have autism or are typically developing, is a unique individual who brings something different to the cast. Everyone grows because we are all learning from one another…We have many many volunteers that make what we do possible but the project is so important that the work is worth it. I watch as children who were afraid to get on the stage come back to later rehearsals and confidently jump on the stage and say hello to their friends. Children who were afraid to try new things suddenly have the confidence to branch out and join the swim team after participating. I watch the typically developing cast members become fierce and knowledgeable advocates, not only for their buddies but also for other children with autism at school and in the community. I hope that those witnessing this transformation with me also see the benefit of building diverse and supportive communities for our children.”
Auman notes that negative public comments and perceptions that are perpetrated against autistic families probably do not come from a place of malice, but simply represent a lack of understanding. That is why she emphasizes cooperative work and learning at the Constellation Theater. Typically developing children get important exposure to their autistic peers that will stick with them as a form of awareness and compassion. Apart from just happy children, parents rave about the healing work that Samantha Auman’s program facilitates.
“Love love love the culture of love, support and creative joy that has been created. Sam created a new avenue for my son to experience but more importantly, Sam allowed me to see and experience my son through a new, independent, creative and fabulously successful lens. For this, I love this program and the young men that I now believe my boys can become. This opportunity expands horizons and supports shell shocked parents as they find themselves with renewed hope and enhanced dreams because of what this group creates.” -LeNan Bradley, mother of an actor with autism and a typically developing buddy.
For more information about local resources, follow the links below.