Just another WordPress.com site

Archive for October, 2011

AUTISM SPEAKING DAY! Yell it loud!

Tomorrow is Autism Speaking Day. When Melanie originally explained the purpose of this assignment I was so disgusted and taken aback. I am writing about Autism Speaking Day in response to Autism Silence Day. The fact that they expect the entire Autism Community to shut up and keep quiet is absolutely absurd. They have so much to say, which has been proven by both speakers in our class: Bard and Christy. They are intelligent and logical people who have been a part of this genre of blogging which is called self-advocacy. Self-advocacy is found in all types of discrimination: gender, sex and race. Years ago, when blogging wasn’t as popular, I kind of get why Autistic self-advocates couldn’t speak out for themselves. But now, when technology is at everyone’s fingertips, why can’t they say what they want when they want to? We don’t ask the gay community to keep their mouthes shut, in fact we have a whole day where others are silent in honor of those that have been forced to be and we encourage the gay community to speak out!

One of the things I noticed by doing a little bit of Youtube research is that there are advocates in the media today for a lot of different minority groups: Oprah, Ellen, Obama. And I tried looking in today’s popular media and I couldn’t find a whole lot of Autistic people. There is Temple Grandin who is a beacon of hope for a lot of parents of children with autism, and there was an HBO special on how two autistic people got married and are living happily ever after. But if you were to measure it up, it’s not nearly comparable. Maybe it’s just time that is separating the groups. But time isn’t going to change this horrific day that encourages the Autistic Community to keep quiet. The Autistic community needs to be louder than ever. People like Bard and Christy need to continue doing what they’re doing because it is encouraging an entire population to come out from under their fear and speak for themselves instead of letting doctors and parents speak for them.

Advertisements

My Imaginary Character

There are all kinds of people in this world. Some short, some tall. Some fat, some skinny. Some pretty, some ugly. And the rest are just typical. But what happens if they’re not typical. What happens if I look at a person and they’re simply average, but their brain works in a different way. This is what Patrick had to deal with every day. He knew he was different, but he didn’t look different. He would try to perform activities like the rest of his friends at summer camp, but simply couldn’t. There were kids that were worse off than him and there were kids much better off and sometimes he was jealous. Sometimes he envied those people and wanted to be just like them, but as hard as he tried he really couldn’t. But one day, they went bowling. This meant competition for Patrick. Patrick was very good at bowling. He has gotten scores so high that other kids were incredibly impressed with him. He would get strikes when the counselors got gutter balls. He wanted to be on a good team because he wanted everyone else to be as good as him, so he asked his friends Nina, Josh, and Amanda to be on his team, which was strange for Patrick because he liked keeping to himself a lot. He knew that if he lost he would be very upset but if he surrounded himself with good bowlers, it wouldn’t be a problem.

After reading The Curious Incident of The Dog In The Nighttime, I realized that my sentences were short and simple. I also realized that the way I described the character was simply typical. There were no outstanding features that differentiated him from anyone else. And I also surrounded him with people that were like him, although the level of autistic tendency varied. I thought my writing has changed a little bit after I realized how sensitive parts of autism is. I tried to be as sensitive but descriptive as possible. It is challenging to paint a picture that is as accurate as it is fictional. I am excited to develop the story because I have one in my head and I want to explore and I want to see how it unfolds. Generating my own character also shows how many stereotypes are engrained in my mind because they definitely come out as I create my own identity in this character. I have to decide whether or not I want to keep them or change them, but that will be for another post.

Parents don’t really know how to feel. Would you? (Blog Carnival)

Hi Guys! This is my blog carnival all about all the different view points of a parent experiencing what it is like to have a child with special needs. Thank you to all of those who wrote about their experiences! Enjoy 🙂

6 Kids and She’s NOT Giving Up!

This woman has 6 children, 5 of whom have autism. She talks about how she would fix her kids for anything in the world. She also talks about how proud she is of them. One of the main topics of this blog was that two of her children have “graduated” from the Inclusion programs at their school. They have been in therapies for behavior and speech and they no longer need the attention of the special needs programs at their school. She talks about the amount of pride in her children she has and she also talks about how much she loves all of her kids and hopes that they end up the same way. She doesn’t believe in chelation or other chemical treatments, but she does believe in ABA therapies to help their children become “more normal.”

Bud Always Had A Pal To Lean On

First off, the title of the blog is very clever. On the autism spectrum, some unspecified disorders are called PDD-NOS (Pervasive Developmental Disorder- Not otherwise specified). I really liked her blog but two stood out to me. In one, she talks about how she was supposed to have twins, but one died in utero. Her other son, Bud, has autism. She talks about how Pal and Bud were twins and during her pregnancy she knew that Pal stuck around to be there for Bud. She knew that he left just when Bud had someone else to lean on, her. “I will never know why Pal couldn’t stay. But I do know that for nine months he stayed with Bud, snuggling around him, bouncing against him, helping him grow. And then, when Bud was ready, Pal left.” She says in her blog post that even though Pal is gone, whenever she listens to Bud’s heartbeat she hears both of theirs beating together. She is grateful that Pal stuck around to help Bud and gave her such a beautiful son, regardless of his developmental challenges.

Kids Really Do Understand

For this blog post, this mother shows how simple education teaches the environment her child is in to be more accepting. She realized that Autism is not as much an internal problem as it is an external problem. If Bud could be comfortable in his classroom with his classmates, he could flourish in that environment. She spent a lot of time trying to explain to young children how they could better understand and accept Bud as just another kid rather than the kid in their class that was different. She used analogies and simple ways to explain to them that Bud was different but the same. Based on what she included in her blog post, I think she did an incredible job.

Other Parents Just Don’t Get It

This mom talks about the difficulties of having a special needs son. In other blog posts she has written it is very clear that she loves her son, as is the case for all of these parents. I think this post shows some of the understandable frustrations that parents find when it comes to their autistic children. She talks about how parents take finding a babysitter on a Saturday night for granted. She can’t just call up a high school kid and ask him/her to come over and watch the kids for a few hours while she goes out to dinner with her husband. There needs to be a specific list of requirements before hiring a babysitter. She needs to prepare them for what they are about to experience, let alone finding someone willing to put up with it. I can tell from her blog post that she is somewhat angry at the parents who got lucky and got the “normal” kids because they don’t have to worry about half the stuff that she has to worry about. I understand where she’s coming from, but every parent has their own headaches and frustrations and just because their kid is normal doesn’t mean the parents aren’t having a tough time parenting them.

Some Have It Worse…

As much as this blogger says that it isn’t fair that parents with typical kids don’t understand what goes on in the life of a parent of a child with autism, she also feels incredible empathy for parents who have children with autism. In this post she talks about a neighbor of hers whose kid has it much worse than hers. Although this blog post is a little scattered, she says that although there isn’t a cure for autism like there is for the measles, there are worse things that could happen to a child and that could affect the parent. She talks about her neighbor who has to be constantly watching her children and making sure they’re breathing because of the diseases they have.  “Would she rather they be as they are, or possibly dead?” I think that is a problem that some parents wrestle with. Their lives become so much harder and so much more stressful because of the unfortunate circumstances their children are in. She knows that she would never rather her child be dead, but would she rather her child be normal?

Her Daughter, Always Surprising Her

This parent is beyond grateful for the child that they have been blessed with. She knew that having a special needs child would entail dealing with a lot of differences. She accepted who her child was, but her expectations were exceeded based on this blog post. She says, “yet here [on the phone with a friend], nearing the age of 12, my daughter is concerned about her friend’s feelings. Not only that, but she has learned how to express that concern.” Parents of autistic children have expectations of their children that are not always positive, but this one was very positive and she got emotional because of the unexpected exceeded expectation. It seems comical to me that a parent with a typical child wouldn’t even notice that their daughter was on the phone with a friend, but this mother got so incredibly emotional just from a simple empathetic question.

What Would Jesus Do?

This post describes how difficult it is to dress a developmentally disabled child. She says how other parents take for granted the simple maneuver of throwing on a shirt, or letting their kid dress themselves for that matter. She talks about how her child hates getting dressed and it is one of the most difficult tasks of the day, which a parent with a typical child simply wouldn’t understand.

The Magic Of A Spongebob Band-Aid

I find it interesting that the littlest things can make a parent happy when their child has special needs. This is a mother who obsesses over PWD (Prader Willi Syndrome). Although it isn’t Autism, based on personal experience I know that parents can do the same thing- obsess over their child’s autism. They try their hardest to find answers to the hardships they are experiencing and they are trying to fix everything. In the midst of all of that, she realizes that something as simple as her child caring about a scar he had never noticed before. She was astonished that something as simple as a Spongebob band-aid could pull her back to reality and see what is truly important in her life other than her child’s disease.

I Can Crack, But My Kids Are The Glue To Fix Me

This blog discusses how difficult it is sometimes to be a parent to a child with special needs. She says at one point in the blog, “Banking on humor, I allowed the corner of my mouth to lift slightly as I told my husband I am planning to willfully become an alcoholic. I am not an addictive person, and I know that isn’t funny to many people. But in that moment I was willing to trade how I felt for how the latter might feel because I was overwhelmed and wanted an escape.” Of course, this is taken out of context because she says most of the time she can handle being a parent to a special needs child (she has triplets but two of them are disabled). There are times when these parents just crack and ask, why me? But then there are other times when these parents are incredibly grateful for the kids that they have.

Born 2 B Me

This blog post really has nothing to do with my topic, frankly. These are quotes from different people about the blessings of having a special need individual in your life. Now, of course these quotes can be applied to the typical person but if you think of it with the knowledge that they are meant for someone with special needs or written by someone with special needs, it makes it all that much more special.

So much has been given to me;

I have no time to ponder over

That which has been denied.

~ Helen Keller ~

Autistic Adults: They Exist And Need A Say

I read the article “Infantalizing Autism” by Stevenson. I never realized how unaccounted for adults were. I guess I never even thought about it because of how many adults are involved in the Autism community. There are adults who advocate, there are adults who donate money, there are adults seeking answers. But none of those adults are actually autistic. They are parents and friends who know someone in their lives that are affected, but aren’t affected themselves. So how can they speak on the behalf of someone who has Autism? Isn’t it better to hear from those people who can articulate for themselves what it feels like to have autism i.e. Autistic Adults? Based on this article they have been ignored and disregarded in almost every forum.

Stevenson talks about four in particular where Autism is prevalent. The first one is the patient run organizations. Parents search for treatments/cures for their newly diagnosed kids and 95% of photos on Autism related informative websites show children. Children are literally the face of autism.

Charitable Organizations were the second forum Stevenson discussed. They frequently use children to pump up the pity party and encourage adults who feel bad for these kids to donate. TaxExemptWorld.com identified organizations that were national charities that talked mostly about donations going to children, and explicit definitions of autism for children, and failed to include how autism affects adults.

Popular media is a viscous cycle. It tries to represent reality, and then reality is shaped by society and the media. Stevenson says, “Society Brandishes the disability of autism as pertaining only to children.” 90% of the autistic characters portrayed in the 1-5 fictional books researched were children.

The last forum that Stevenson discusses is the US News Industry. Newspapers document the aspects of society, including disability. They use rhetoric that makes having disability a bad thing, and then they attach children to this stigma. All of a sudden stories are being documented on how children overcome their disabilities and become normalized adults. They focus on children who face autism and how they overcome their shortcomings. Congrats to them, but what about the adults who have learned how to live in a normal world with their autism? I personally think that is an even more impressive feat than growing out of it.

Autistic adults are incredibly underrepresented. All we have been talking about in this class is how much education and representation affects this population, but even we have only discussed how autism affects children. The video (https://rethinkingautism.com/Support_Group_Video.html) made me really understand how much they are trying to reach out. This woman has autism and doesn’t seem like it or look like it. But she struggles with a lot in her daily routine, and people aren’t even listening to her. If anything, they should be devoting their attention completely to her because she is the only one who REALLY knows what is going on.

The Caste System- Autism Spectrum Style

Bard did an awesome job explaining her issues with the Non Autist community. One of the things that I commented on in her blog that I wanted to expand upon here was this idea that the Autism spectrum can be put into a caste system format, and that creates a horrific divide. I drafted my own caste system relating to Autism and wanted to post it here. I recreated it below. I just want to preface by saying that these are not my direct opinions, but a general opinion that I have been gathering over time based on readings, discussion, and personal experience.

The top of the caste system would be the Non Autists who have no relation to the autistic community. They really have no connection, and therefore don’t know anything about it. I feel as though those are the people who say, “Oh, you have Autism? My cousin’s friend’s little brother has Autism!” This reminds me of Bard’s #1 point. The second level of the caste system would be the Non Autists with a direct relationship to Autism. These would be the people who say, “Well you can talk, therefore you’re not as low functioning as my son/daughter,” which would be point #7. The third level is the high functioning autists. They can still function in society and, based on common misconceptions and discriminatory beliefs, they are “better off” than the lower functioning autists because they can accomplish a lot of things that people who can’t talk can accomplish. And the final, and lowest group in the caste system is the low functioning autist group. Bard states, “Don’t assume a classical autist is incompetent or LFA because they need staff and lack verbal speech, they could use AAC have skills that you probably could never do.” Unfortunately, that is what society perceives and therefore, they are at the complete bottom, which is unfair and discriminatory.

I wonder how Bard’s caste system looks…

The cure does not exist…

The cure does not exist. That is something that needs to be accepted. I refuse to believe in something that is not reliable information. There is no concrete evidence to prove that there is one specific way to cure Autism, so that leads me to believe that there is no actual scientific cure. I can only comprehend what people in the specialized field tell me, and I keep hearing over and over again that there is no definite “cure.” The issue that I had was that the rhetorical manifestation in parents was astonishing. I would understand if a parent of a child with cancer wants to “cure” their child, but when their child has a cancer with no cure, doesn’t the parent want to make sure that their child’s life is lived to the fullest and they are the happiest they can be?

From a disability studies perspective it is important to continue to study how to help this population. Whether it is ABA for the people that it does help, or other treatments that parents are willing to put their kids through, disability studies research is important in general. The video that we watched proved that of some of the other disorders/diseases that affect children in this day and age get much more funding for research than Autism spectrum does. Watching the video “Fixing Autism” proved that the numbers are very disappointing compared to the amount of people that are affected.

I want to take a second to talk about the video. Fathers in general remind me of the more aggressive parent. This may be a generalization but If you think about a mother and father dynamic, the mother is the nurturing one and the father is the caregiver. The father wants to protect his kids in any way they can. In some of the other things we’ve read about, parents want to correct their child of the disease they have. They want to cure their child and make them normal. This father proves that although it is difficult to raise a child with Autism, it was obvious that he valued his daughters’ differences and wanted to enrich her life the way it is. I thought it was amazing that he wasn’t trying to normalize his daughter or change her in any way. In my own experience there are more parents like this who try their hardest to give their children the same opportunities that the “typical” children get but that doesn’t mean that they parents want to change their kids. They want to provide their kids with the best opportunities they can afford but that doesn’t mean a cure is immanent.

Tag Cloud