Take Home Final – dis/lit 20

Final Exam

Kaitlin Bailey

Dr. Foss

ENGL 384-01

April 29, 2020

Final Exam Prompt 1: The Toxicity in Not Abandoning Expectations

As I was reading Jim Sinclair’s “Don’t Mourn for Us,” I couldn’t help but wonder why there is so much grief and mourning happening in families after the diagnosis of a child with autism, and I realized the grief stems from the expectations parents have of their autistic child that they cannot ever possibly meet. Sinclair addressed this article primarily to his parents as a declaration of his own experience, and the blunt tone and vulnerability exhibited in debunking the myths and improper attitudes that parents often have towards their autistic children is powerful. In this essay, I will use Sinclair’s article to explore how families are in fact not grieving their child’s disability, but they are grieving the loss of the dream of a “normal” child that they can no longer have. Sinclair’s article is divided into three sections, with three separate myths that he debunks throughout. These three myths are that autism is not an appendage, autism is not an impenetrable wall, and autism is not death. I want to place emphasis on the first two sections.

Sinclair invites readers to “look at our autism, and look at your grief, from our perspective,” that being the perspective of a person with autism. There is already a certain amount of grief associated with the diagnosis of any child’s disability, but unfortunately more often than not with parents of children with autism, it stems from the loss of the idealized child they have fantasized about. That being the continued source of grief causes damage and hinders the development of an authentic relationship between a parent and their child (Sinclair). Treating an autistic child like a burden to their family only reinforces negative and discriminatory stereotypes of disabled children not being equal to or as desirable as able-bodied children and is nothing but harmful. It is the punishment of a child for something that they have never, and will never, have control of.

Beginning in the first section, Sinclair expresses that autism is not something that a person has, or a “shell” that a person is trapped inside (Sinclair). It is unfair to look at a child with autism and assume that their autism is just a layer of their personal identity that can be removed and disposed of and mourning the diagnosis of a child’s autism is a parent simply mourning their child’s entire being. Sinclair expresses, from his perspective, that when an autistic child hears that their parent wishes they did not have autism, they hear that their parent wishes they do not exist and that is a valid point to be made. That is what the child hears every time a parent prays for a cure, because they know no other way to exist. Loving a child with autism means understanding that their autism is included in every action, thought, emotion, encounter, and relationship that they will ever have (Sinclair). To do otherwise proves to the child that they are unworthy of receiving the same love that a “normal” child receives.

A vital aspect of creating an authentic relationship with an autistic child is to come to terms with the fact that when you are feeling like the child does not see you or is unable to respond, it is simply untrue. Just as Sinclair narrates, autism is not an impenetrable wall. This error lies in the idea that the child is incapable of relating at all. In reality, it is just that your shared understanding of signals and their meanings are not shared by the child in the same way that it would be difficult to communicate with someone who speaks a completely different language (Sinclair). I know that the lack of validation from their child is difficult to understand as a parent. It is not easy to put previously conceived ideas of communication aside to develop a new way to communicate and receive validation, but it is not impossible. It is painful to desire a relationship and feel rejected, but often the child is the one being ostracized for being unable to communicate when communication relies on the effort of two people. The non-disabled parent is equally responsible for the lack of validation they are receiving that they are desiring from their child.

To fully communicate, one must give up the feeling of certainty that comes from being on your own familiar territory of language and be open to letting the child teach you their way of communicating and expressing language, and let them “guide you into their world.” And the outcome, if achieved, is still not going to be a “normal” parent-child relationship (Sinclair). That expectation simply needs to be fully abandoned in order to be emotionally available to the child. It ultimately just comes down to the truth that the ways of communication in a non-disabled person and an autistic person are just different, and without that understanding autistic people are being blamed for the close-mindedness of non-disabled people and their relationships can result in unnecessary resentment for reasons that were never their fault to begin with.

In conclusion, pitying autism and feeling sorry for an autistic child will never allow for a healthy relationship to be built. The relationships that feel like there is something missing in them are one-sided and a direct result of the expectations placed upon the child that can never possibly be met. That is where the greatest disappointments in the relationship comes from, not the child’s autism. Sinclair provides insightful advice and guidance from a first-person perspective for developing those authentic and healthy relationships, while also sharing what common misconceptions to ignore throughout that process. I found his words to be indisputably true; autism is not a tragedy. By mourning the loss of the “normal” child that never was, you are disregarding the existence of the child that is right in front you; a child deserving of the same opportunities to develop relationships.

Works Cited

Sinclair, Jim. “Don’t Mourn for Us.” Our Voice, vol. 1, no. 3, 1993.

I pledge that all work is my own.

Word count: 1031

The Use of Literary Devices and Synchronization in dePack’s Troubleshooting

Understanding the thought process of people with disabilities is something that neurotypical people often struggle greatly with. It makes disables people seem alien to them, and often ignorance causes intolerance, which leads to people with disabilities being isolated from society and shunned as though they are less than human. Autism is a disability that many people do not know about, as well as one that many do not care to know about due to the nature of it, and how different autistic people act compared to the norm. People write them off as less intelligent or strange simply because it is something they cannot understand, nor do they often take the time to try. Because people with autism have such a different way of processing the world around them, it is easy to assume that there is no chance of understanding them, which can lead people to not even try, but the more time people spend with someone, the easier it is to figure them out and work with them. Selene dePackh’s novel, Troubleshooting throws the reader into the mind of an autistic character, Dax, with an auditory processing lag, and the writing style, use of context, and dialogue mimics the way that she must synchronize with people in order to be able to understand them.

The writing style that dePackh uses in Troubleshooting has an interesting way of jumping around timeframes in a way that causes a reader to be confused about where and when the scenes of the book take place, which mimics the confusion Dax must feel before she has processed what someone has said. It almost gives the reader a literary whiplash, switching back and forth from past to present, scene to scene, so quickly that the reader is only able to process what has happened about halfway through the page. Immediately upon opening the book with chapter one, the reader is put into the middle of a conversation between Dax and Chill, Angela Dark’s brother. They are playing some sort of game that the reader is given no context to. Before anything is fully explained, the narrator, Dax, then continues on to say that the conversation happened “a couple of decades ago” (dePackh 1). Dax implies that she is somewhere different in present, but instead of giving the reader any information about that, she starts to tell the reader about the past again, and how she came to meet Chill Dark instead. Then, from chapter two to chapter three, the narration skips from Dax telling Angela her background and how she got to Thunderbird to an explicit sex scene in chapter three, which shocks the reader, and seemingly comes forth with little warning to it happening. Just as the reader is starting to somewhat understand Dax and be solid in a scene with her and Angela talking, they are immediately thrown into something else with these same characters, but a completely different scene with a very different done. This sort of mimics the way that someone with an auditory processing lag may experience conversation—just as they process something that was said to them and tune back in, the conversation has gone completely elsewhere, and the process starts again.

Similar to the way the novel’s jumping around causes confusion, dePackh introduces information without context, which makes it impossible for the reader to understand, but as the novel progresses, more insight is provided as though the reader is getting synchronized with the book and can more easily understand things that are happening. On page two, we are given a few proper nouns with no context or backstory, as though these bits of information are important to the worldbuilding of the futuristic world this takes place in, but the reader is not clued into the significance of them. The “Dark family” is mentioned, but the reader does not yet know why they are important, as only two members of the Dark family have been mentioned. They are spoken about like they are infamous, but at this point in time, the reader does not know why. The nations “Haudenosaunee” and “Anishinaabe” are mentioned, but the reader is given no information as to what they are or told that they are nations of indigenous people, aside from them being near the Canadian border. The reader is left to their own devices, with the choice of either remaining in the dark or looking up the information themselves, which helps the reader to understand how it may feel like for Dax since she is unable to make sense of words upon first hearing them (dePackh 7). At the beginning of chapter two, the reader is introduced to Chill’s Uncle Gabriel, who is fixing Angela’s hair, but the reader is not given any information to why or how he is there, nor are they given any information about the setting they are in until halfway through the paragraph when the fence is mentioned to show that they’re in the yard, and then on the next page, the reader is informed that Uncle Gabriel is allowed regular visits. This creates a lag in understanding because the information is presented, and then explained with a sort of delay, creating a small window of confusion similar to what Dax may experience. However, as the novel progresses, we are given explanations of information sooner. One example of this is at the beginning of chapter eleven, with the phrases: “I was supposed to meet her at nine, and it was still a couple of minutes to, but it appeared she’d been there a while. I was learning Petra was a heavy drinker. She didn’t drink hard every day, but when she did, she meant business” (dePackh 93). Here, Dax is forthright with information and explaining the characters, even giving information that the reader may not necessarily need. The mention of Petra being a heavy drinker as well as Dax’s love interest at the time is even foreshadowing to her relationship with “The Mistake”, an abusive alcoholic who takes over her life for a while. Up until this point, the reader is thrown around through Dax’s life with little context or explanation to what’s happening, but here, there is a very noticeable change in the writing. Not only is the reader given a full explanation of the setting and characters in the scene, but there is also a hint to what is coming next, which had not happened, at least not noticeably, before this point, as though after reading the book for this long and struggling to process it, they are finally getting “synchronized” (dePackh 5).

Literary devices can be a powerful tool in writing. They can create all different tones and moods and bring the reader on a specific journey that is unique to each and every book. The way that dePackh uses these literary devices is important because it gives the narrator a voice that is specific to how she processes as a person with autism, and it helps the reader to understand that voice and gives them insight into her brain. Books like this show people that autism is not something that makes someone alien, but only something that makes them process a little differently, and it shows them that if enough time is spent with someone, then they are not so difficult to understand after all.

Word Count: 1223

I pledge I did not give or receive unauthorized help on this assignment

WORKS CITED:

dePackh, Selene. Troubleshooting: Book One, Glitch in the System. Reclamation
Press, 2018.

Tori Percherke’s Take-Home Final on Jim Sinclair’s “Don’t Mourn For Us”

Don’t Mourn For Us

In the literary text, “Don’t Mourn For Us”, is based on the perspective of somebody with autism, Jim Sinclair. Sinclair’s idea for this essay was to broadcast feelings to non-austic’s about the idea of a “normal child”. Reading this essay, I came to the conclusion that those who choose to have children, should be thankful for the child they bring into this world. If they aren’t, they weren’t made to be parents in the first place. Parents should not create expectations for their unborn baby, or feel at loss over what is real. Autism is a real, and beautiful thing.

Sinclair states in the beginning of this essay, that according to “non-autistic” people, autism is the “most traumatic thing to ever happen” to parents (1). However, parents who create all these expectations in their minds, is the real traumatic thing here. Although bonding and creating that relationship with your child will be different than most, it’s the parent’s job to form ways to bond with their kid instead of resentment. In the text, Sinclair responds to this sort of frustration by saying, “the child isn’t incapable of relating at all. It only means [the parent is] assuming a shared system, a shared understanding of signals and meanings, that the child in fact does not share” (1). Just like treating those with autism like somebody who speaks a different language, there are ways to communicate and relate. Parents just have to be open-minded to forming those different ways. If the parent is successful, and is patient with their son or daughter, the reality of their child getting a drivers licence or moving away to college is very likely. But, parents can not push their process with the child. It isn’t the job of the child to be a certain way for other people. And if the parent has a mindset of bitterness, anger, and negativity toward a child, it can create resentment against the parent. At the end of the day, a child is only a child. The kid cannot control what they were born with, let alone, what makes them, them! “Autism is a way of being” (1). Autism is different, and has too many negative connotations for this world: ignorance, disrespect, and the willingness to learn more about it. Instead of grieving about autism, express and explore the world in which autism gives. By providing that information toward the child, the child will learn how to be proud and happy of who they are! It’s understandable to be stressed, as there are always new things to be anxious about. But, if a parent feels as if they cannot hide those doubts, and significant emotions toward their child, they were not fit to be parents in the beginning. A parent is kind, and accepting toward their baby.

So, what does it mean to be a parent?: A parent takes care of their child physically and emotionally, a parent provides, a parent protects and keeps the child safe from harm, a parent loves, a parent teaches and helps their child when in need, and a parent is the role-model to their child (2). The definition of a parent is more than just giving birth and the passing of genes. It’s a role that the world has given them, and the world should expect the parent to treat their child or any child, with love and respect. Sinclair says that “[autistic children] need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don’t mourn for us. We are alive. We are real. And we’re here waiting for you” (1). The child in which has autism will help guide the parent in any confusion they might have. But, it’s the parent’s job to get connected in a community that supports autism. In order to help maintain a connection with an autistic child, the parent must learn to embrace the culture their child and family is involved in. Embrace the differences that the world has given!

In Sinclair’s final paragraphs, he tells the readers to “learn to let go” (1). Which is such a peaceful statement but also, a command. Having autism isn’t the same as losing a child. Because your child is alive, and real. The idea of having a normal child never existed. Having autism is what makes up a child to be unique and different from the rest. If those differences within a parent’s kid isn’t uplifted, how does a parent expect their kid to live a happy life? Or feel as if they can be loved by the world, if their own parents can’t? Sinclair shares that, “[Those with autism] need you. We need your help and your understanding. Your world is not very open to us, and we won’t make it without your strong support. Yes, there is tragedy that comes with autism: not because of what we are, but because of the things that happen to us. Be sad about that” (1). If parents need to rant about their emotions toward autism, there are support groups for that. The groups are meant to embrace what has happened, and what won’t change. Enrolling into support groups, and counseling will only benefit relationships with those of autism. Having a child that is on the spectrum, is more than a diagnosis, it’s an “adventure of a lifetime.” The parent’s duty is to be as involved as they possibly can, and to also love what they brought into the universe.

To conclude this analysis, I believe that after reading, “Don’t Mourn For Us”, parents who feel negatively toward their autistic child are in no place of being a parent at all. Parent’s are supposed to accept the child that they brought into this world, and treat them with the love and respect they deserve. I also believe that people should know what it means to be a parent before conceiving a baby. And finally, if a parent has an autistic child, it’s the families’ job to make sure that that culture is embraced and celebrated. Those with autism, unfortunately experience those families too often that aren’t loved equally as other children. The world needs to create a brighter and more positive connotation than the one it has today. If somebody wants to be a parent, they need to be thankful, and embraceful for the child they get. As Sinclair says, “Don’t mourn for us. Autism is alive, and real” (1).

“I hereby declare upon my word of honor that I have neither given nor received unauthorized help on this work.”

X Tori Percherke

Word Count: 1089

Work Cited:

(1) Sinclair, Jim. “DON’T MOURN FOR US.” Don’t Mourn For Us, www.autreat.com/dont_mourn.html.

(2) “What Does It Mean to Be a Parent: Gerber Life Insurance Blog.” Gerber Life Insurance Parenting Blog, 16 Jan. 2019, www.gerberlife.com/blog/what-it-means-to-be-a-parent/.

“What Is Autism?” Autism Society, www.autism-society.org/what-is/.