A Florida Vacation: Fort Lauderdale

The next day we checked out of our hotel, said goodbye to my brother and prepared for our journey to Fort Lauderdale. My father asked the concierge about the route to Fort Lauderdale that would take us through the small rural Florida towns. The concierge replied that no one had ever asked him about taking that route and that it was significantly longer than the other route but my father really wanted to show Gabrielle “Trump Country.”

I told my father that I didn’t want to spend an extra two hours in the car just so he could mock poor people and that furthermore he had no idea how anyone in those counties voted, he was just making assumptions based on stereotypes. Yet my father insisted that he was not mocking poor people and damn it this was his vacation too so he deserved to see Trump country!

Since we knew this was going to a be a long car ride we stocked up on food from the drug store, mostly consisting of nutritious snacks such as donuts, Oreos and Pringles.  I slept for the first hour or two of the car ride and I woke up with cramps in my butt cheeks so I asked if we could stop somewhere and stretch our legs. At a gas station my father asked an attendant to recommend an interesting place for us to stop and he recommended a town called Lake Placid.

This was not the Lake Placid on which that horror movie was based. It was a small, rustic town covered in colorful, interesting murals. It also has a real, live, clown school. Even though I’m scared of clowns, I enjoyed seeing the clown school as well as the murals and I took lots of pictures. An hour or two later we made a stop at a nature park at which I got to see a live raccoon in broad daylight and an hour or two after that we arrived at our hotel. We spent some time at the beach and then returned to the hotel room to watch the Oscars, which I found rather boring until that clusterfuck at the end.

In the morning  we went on a boat tour on which we were shown the waterfront properties of the rich and famous. I try not to feel jealous of the wealth and privilege of others because I know I come from wealth and privilege myself but when I saw those mansions I couldn’t help but feel jealous. On that boat ride I also saw my first wild iguana. I hadn’t even known there were wild iguanas in Florida. Apparently they are descended from pets that were released.

Our family friends Carl and Elaine have a condo near Fort Lauderdale and had expressed interest in getting together with us when we were there so I called them and made plans for that night. My father told Gabrielle that he had known Carl and Elaine for ten years. I had to laugh at that because I’ve known Carl and Elaine my whole life and my father knew them before I was born. I have noticed a tendency in people once they reach a certain age to think that anything that happened a long time ago happened about ten years ago, never any longer ago than that.

We met Carl and Elaine as well as their adorable dog Zoe at their condo at around 7. When we told them we were going to Miami and Key West they told us they didn’t like either of those places- Key West was tacky and full of loud, drunk, obnoxious people and it was unsafe to walk the streets of Miami at night, as there was a good chance you would get mugged. I saw Gabrielle’s eyes grow wide with alarm. I just hoped we would enjoy Miami and Key West more than Carl and Elaine did. I didn’t think my father and Gabrielle could possibly dislike those places as much as they disliked Disney World.

Once it became clear to Carl and Elaine that we had not eaten dinner and were hungry we headed over to a diner where we reminisced and had a lively conversation. There was much laughter as well as a few tears. When we were done eating we had a waiter take a picture of the five of us. I captioned it “Here’s to 10 years of friendship-or 35!” Elaine said “35 years feels like 10 years when you’re having fun-and we did.”

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Adventures in Mental Illness: Part 7

The doctors at Payne Whitney ended up diagnosing me with Schizoaffective Disorder. Schizoaffective Disorder is ‘a mental disorder in which a person experiences a combination of schizophrenia symptoms such as hallucinations or delusions, and mood disorder symptoms, such as depression or mania’ (Mayo Clinic). I think that was a pretty silly diagnosis for them to give me considering my reality testing was perfect and some of the ‘psychotic’ symptoms they were observing could be accounted for by my developmental disability but I guess they felt they had to settle on a diagnosis and Schizoaffective Disorder was the best they could come up with.

Mental illness on its own can be hard enough to understand and autism spectrum disorder on its own can be hard enough to understand. Put the two of them together and people are often completely baffled even though it is common for the two to go hand in hand. The fact that the doctors were so convinced that I was experiencing hallucinations and delusions convinced me that they did not understand me, although I could hardly blame them for not understanding me when I didn’t even understand me ( I may have expressed those thoughts in previous episodes of this mental illness saga but now that we’re on episode 7 it’s hard for me to keep track of what I’ve said and I feel like they’re thoughts that are worth repeating anyway.)

Years later a friend asked me if I found my stay at Payne Whitney to be helpful. I think it was helpful to me only in the sense that it was a holding zone. Since it was clear that the doctors there could not understand me I certainly didn’t think they could help me.  They were not giving the kind of help I needed and I was not in a frame of mind in which I was receptive to help so there wasn’t much hope of me making progress.

As I said, I don’t remember much of anything that happened while I was there so it’s possible there were individual therapy sessions in which caring therapists tried to get to the heart of my issues and my mind just has no record of it, but I get the impression the doctors spent a lot more time talking about me than talking to me. I got the impression that I was more a patient/case study to them than a human being they cared about. For me and I’m sure for many others as well knowing that the person who’s assigned to help you really cares about you is the first and most important component necessary for healing.

I suppose it’s silly and unrealistic of me to expect a warm, caring atmosphere in a mental hospital but some mental hospitals are better than others. Some mental hospitals do provide individual therapy with caring professionals and encourage the loved ones who visit the mental patients to hug and touch them.There may have been good reasons behind Payne Whitney’s no touching policy but I really have to question the wisdom of enforcing such a policy. Hugs and loving touch have been proven to be beneficial for mental health and a source of comfort to those who are suffering.  Being deprived of loving touch has been proven to be detrimental to one’s mental health. I do realize that there’s no one size fits all rule and that some people are bothered by being touched but it seems a shame to have a blanket policy that’s harmful to the many people who want and need to be touched.

Another thing I have no memory of is ever going outside. Again, it’s possible it did happen and it’s possible it wasn’t feasible to let me outside but being deprived of fresh air cannot be good for the mind, body or soul.

I also have to question the wisdom of giving me antipsyschotics. I was being given a potent drug with adverse side effects intended to treat a disorder I did not actually have. I’m not going to jump on the “Big pharma is evil and destroying peoples’ minds and bodies for the sake of profit” bandwagon because I think psychotropic medication has helped a lot of people and I have certainly been helped by some of the medications I took but this was an example of medication being prescribed inappropriately.

I was talking to a relative of mine in Europe who had a very different experience at a mental hospital. His was a mental hospital where the patients were allowed to roam the grounds outside, use the internet, take pictures and have sexual relations. My relative was wondering which system was better. I don’t know which system is better but I do know that the state of mental health care in the U.S. is deeply flawed and broken. What I went through at Payne Whitney and at the treatment center I was is not unusual and it’s not one of the more horrifying stories out there.

I was in Payne Whitney for about six weeks but you could have told me I was there for six days or six months and I wouldn’t have known the difference. I had lost all sense of time. When the doctors decided to release me it wasn’t so much because I’d improved as because they didn’t know what else they could do for me.

They weren’t sure what should be done for me after I was released either. There was talk of sending me to a day treatment program and there was talk of sending me to a program for the mentally ill that was located on a farm, in which the residents helped to take care of plants and animals. I love animals so the farm program seemed like a good option for me but I was deemed to be too unstable for it.

Just like I have no memory of the day I entered Payne Whitney, I have no memory of the day I was released. I do know that the doctors said there was a good chance I would end up having to return at some point.

25 Bloggish Facts About Me

  1. I made up this tag myself after doing the 25 Bookish Facts About Me
  2. This is the first time I’ve written two blogs in one day. I’d like to write a blog each day but I’m not sure I can manage it.
  3. I had my first blog when I was a teenager. It’s not a blog I’m especially proud of.
  4. I find the statistics that WordPress gives fascinating and I’m always looking at them.
  5. Some of the search terms that have been used to find my blog include “psycho mental patient adventures sex”, “daddy can you give me a massage” “why true friends do not make you feel inferior” and “making pigeon noises insult”
  6. My blog entries are much longer than most other peoples’ blog entries and much longer than the average internet user’s attention span.
  7. All of the multi-part blog series I’ve done I originally intended writing as one blog entry.
  8. I’m pretty sure that a large group of people hate watches my blog so they can mock and criticize the things I write but that’s fine because I mock and criticize those people on this blog too. I can see from the referral stats that my blog has been the subject of threads on their message board. I’m just glad I’m so interesting to them.
  9. Some of the most hurtful things that have ever been said about me were said in the form of WordPress comments.
  10.  I’ve gotten some really nice WordPress comments too.
  11. I have no interest in reblogging anything. I want everything on my blog to be my own writing.
  12. I don’t think I could be one of those bloggers that limits their blog to one topic. I’d get bored writing about the same topic over and over again.
  13. I have so many ideas for future blog entries.
  14.  Blog entries almost always take me longer to write than I anticipate
  15. I enjoy coming up with pseudonyms for the people I write about on this blog.
  16.  Multiple people in my real life have read about themselves on this blog and said “I did the same thing that person did” or “I agree with what that person said” without realizing they were the person I was writing about.
  17. I worry about offending the people I write about, which makes me wish I was better at writing fiction.
  18.  I share a lot of sensitive embarrassing personal information on this blog and I make this blog entirely public. Shame has been a destructive force in my life so it’s been therapeutic for me to just let all my shit out there for the world to see.
  19. This blog has given me a new purpose in life.
  20. I like it when the bell at the top of the screen lights up red to tell me I have a new notification.
  21. I wish more people read my blog but at the same time I’m surprised and happy that this many people do read it.
  22. There’s a topic I’ve been meaning to write about for months but I’ve been putting it off because I’ve been afraid to write about it.
  23. I proof read my blog three times before I hit publish.
  24. My blog title Crazy-NOS comes from when I was in a mental hospital and the doctors were having trouble giving me a diagnosis. I jokingly said that they should diagnose me with Crazy-NOS (Crazy, not otherwise specified)
  25. Last year when someone suggested I start a blog I replied that my life was too boring for a blog. I think I was wrong about that.

25 Bookish Facts About Me

  1. When I read to myself I mouth and vocalize the words I’m reading.
  2. I’m a slow reader.
  3. I wish I was a fast reader.
  4. I’m a literary snob.
  5. I judge people who don’t read.
  6. It bothers me that it’s so hard to find blogs that focus on literary fiction on WordPress.
  7. Finding typos in published books drives me crazy.
  8. Barnes & Noble is one of my favorite places to be.
  9. I like it when books make me cry.
  10. I used to be really in to books about abused children but then it became too much for me.
  11. I was resistant to Kindles at first but now I love reading on the Kindle.
  12. I love looking at lists of books. Sometimes I think I spend more time doing that than actually reading books.
  13. I’m a sucker for Kindle daily deals.
  14.  There was this advertisement that was constantly on my Kindle for some trashy book about a vanishing fetus and I hated looking at it.
  15. I refuse to see a movie based on a book  if I have not read the book first.
  16.  There’s usually a reason for why I’m reading certain books at certain times. For example I started The Good Earth yesterday because it was Earth Day. The book I finished yesterday was about a boy on the autism spectrum and I chose it because it’s autism awareness month. The 13th Tale was the 13th book I read this year.
  17. I used to always look at the last page of a book before I finished it.
  18. I’d like to join a book club but I’m shy.
  19. Even if I don’t particularly enjoy the book I’m reading I enjoy the act of reading.
  20.  I hate it when there’s no summary of what the book is about on its back cover or jacket.
  21. One Child by Torey Hayden is the book that has had the biggest emotional impact on me.
  22. I’m good at certain types of writing but I’d be terrible at writing a novel.
  23.  I hardly ever read nonfiction aside from memoirs and I’d like to change that.
  24. I find it difficult to pick favorite books and to assign books star ratings.
  25. I’ve read several books all the way through without realizing that I’d read them before.

A Florida Vacation: There’s more to Orlando than Disney World

As my brother and I left the Magic Kingdom full of anger and annoyance, I suggested we visit International Drive. Aside from Disney World, International Drive is probably the second most popular and well known place in Orlando.  It’s the city’s main tourist strip.

In addition to Universal Studios and Sea World it has attractions such as a Titanic museum, a wax museum, a chocolate museum, an animal skeleton museum, pirate miniature golf, a murder mystery dinner show and a zombie outbreak experience.  I knew there was no hope of getting my brother to agree to visit any of those attractions but at least we could have dinner there and look around.

I wasn’t sure where exactly International Drive was but I was hoping it was near The Magic Kingdom.  That way we could kind of sort of convince ourselves that our ill fated trek to The Magic Kingdom had been worth it. It turned out International Drive was right next to our hotel.

When we got there we saw some interesting sites including a hotel shaped like a castle and a building that looked as though it was upside down. When we passed the stores full of Disney merchandise I was still feeling so irritated by the whole Magic Kingdom fiasco I was tempted to take a picture of myself giving Mickey the middle finger.

My brother and I argued about what restaurant to eat at like we always do but eventually we settled on one. I don’t remember what I had for dinner but for dessert I had cheesecake lollipops, which were good. I wanted to ride the Orlando Eye, a ferris wheel that gives a birds eye view of the city. We’d seen it from our hotel room and been intrigued by it. I’d asked my friend Mary where it was and she’d said it wasn’t in Disney World so we shouldn’t waste our time but of course since then certain negative feelings towards Disney World had emerged and become known so we were willing to spend our time on non-Disney attractions. My brother said we should save it for the next day when our father and Gabrielle could join us.

When we got back to the hotel and told our father what happened he got to have a glorious ‘I told you so’ moment. “You should have listened to me when I told you the tickets were only good for one park per day. Why did you find that so hard to believe?” he said to me.

I figured that even though we hadn’t gotten to visit the Magic Kingdom that night I should honor the promise I had made to my brother to do something non-Disney the next day. I was so mad about what had happened that night that I wanted to boycott Disney out of spite anyway.

My brother was so tired the next day that he would have been happy staying at the hotel but I wasn’t going to stand for that. I looked up nature parks in the Orlando area and we settled on Wekiwa Springs State Park because of the opportunities it offered for hiking, canoeing and swimming in the springs.

When we got to the springs I was intimidated by the ‘Swim at your own risk’ signs that warned of the possibility of alligators. I know that there’s a possibility of alligators in any fresh body of water in Florida though. The springs looked so inviting so I decided it was a risk I would just have to take. I’d read that the springs were very cold so I prepared myself for a polar plunge but to my surprise and delight the water really wasn’t that cold. After I’d been in it for a few minutes it felt warm. I had a nice swim and I exited the swimming hole with all my limbs intact.

After I’d dried off my brother and I went on a hike. He’d sat out the swimming because he’d forgotten his swim suit. After we’d been walking for about half an hour I discovered to my dismay that he’d also forgotten to bring water. Luckily this is Orlando we’re talking about so this nature park had a store that had not only water but soda, chips, sandwiches, ice cream and cupcakes. After I’d gotten the food I asked my brother if he wanted to go canoeing but he said he was too tired so we left.

The drive back was not too pleasant for me because my brother had the radio tuned to Armed America. I wasn’t sure how or why there would be a radio station dedicated solely to gun laws in America but needless to say as someone who really dislikes guns and is very pro gun control, I strongly disagreed with the ideology that was put forth on that station.

That night we had dinner at another restaurant on International Drive with our father and Gabrielle. Then we rode the Orlando Eye. Although Gabrielle had no problem riding the London Eye, she decided she didn’t want to go on the Orlando Eye so it was just the three of us. I didn’t find the view from the top to be all that impressive but the ride was nice enough, especially since we got free cokes (the ferris wheel is owned by Coca Cola.)

Before we’d gotten on the ferris wheel we’d had our picture taken in front of it. When we got off we were asked if we wanted to purchase our pictures in a little booklet about the Orlando Eye. My father asked how much it was and was told that it was 45 dollars. “45 dollars?” my father replied incredulously. I panicked for a moment because I was afraid he was going to say  “But I thought it was free!’, which is a tired old joke of his that makes me cringe every time but he handed over the 45 bucks and said  “Ah, well, it was an experience, a moment in time.”

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The Unicorn Frappucino

I tried  the Starbucks’ unicorn frappucino the other day. I first heard rumors of it about a week ago but I wasn’t sure if the rumors were true or if they were as mythical as a unicorn. When I found out that a unicorn frappucino really was coming I was excited. When I posted about it I was told that it was cancer and diabetes through a straw. That wasn’t going to deter me from trying it though because pretty much every food ingredient out there has been linked to cancer by someone at some point and most of those links have not been definitively proven.

I also heard that the unicorn frappucino has as much sugar as three Snickers bars. That wasn’t going to deter me either because eating three Snickers bars in one day would not be entirely out of the realm of possibility for me. Oh, who am I kidding-if I got a package of Snickers it’s more likely than not that by the end of the day I would have eaten at least three of them. One day last month I ate three ice cream sandwiches ( I regretted that not just because it gave me a stomach ache but because it made me unable to eat the much better ice cream at Marble Slab that night.) I won’t even tell you how many bite sized Snickers I can consume in a day around Halloween time.

My gluttony aside, I do find all the pearl clutching over the unicorn frap’s high sugar content to be over the top.  First of all, it’s only available for a few days so no one will be consuming it on a regular basis. There are other drinks with similar amounts of sugar that a lot of people do consume on a regular basis. Second of all, I think anyone can tell from looking at the drink that it contains a lot of sugar and that it’s not very healthy. It’s not as if Starbucks is touting the drink as a good source of essential nutrients and claiming that four out of five doctors recommend it. Finally, let us not forget that consumption of the unicorn frap is 100% voluntary. The drink is not being forced down anyone’s throat and toxic unicorn sludge is not leaking from anyone’s faucet.

So it was with great anticipation and enthusiasm that I went to Starbucks on April 19th, the day the unicorn frappucino was slated to arrive. When my mom inquired about it the barista said she’d tried it and it tasted like Warheads. “Warthogs?” my mom asked. “Warheads!” I corrected as I rolled my eyes.

The barista said she thought I might like it (I’m a regular at Starbucks and I’m known to have a sweet tooth.) When my drink arrived my mother remarked on how pretty it was and told me to take a picture. As if I needed to be told! I took multiple pictures of the drink and I took multiple selfies with the drink. Then I uploaded those pictures on to multiple social media accounts.

Finally I started drinking it. What did it taste like? That depended on the sip I was taking. Sometimes it was fruity, sometimes it was sweet and sometimes it was sour. I likened the taste to Sour Patch kids and the sourness did come in patches. I also compared it to inhaling a Pixie Stick and then licking a lemon. It certainly wasn’t one of the best things I’ve ever tasted but it wasn’t bad. I liked it well enough.

As I was drinking it I checked Facebook and I noticed that I was getting a lot of likes and comments on my pictures of it. It wasn’t long before my number of likes reached the double digits and it became one of my most liked posts of all time. People complimented me on my cute Unicorn Frappucino selfies and they were eager to know more about this magical drink.

About half an hour after I consumed my drink, I got a stomach ache. It was a pretty bad one and it lasted for hours. I ended up having to take medicine for it. But do I regret drinking the unicorn frappucino? Nope, not at all. I’m grateful for the experience. I’m glad to have been part of a sensation that lit up social media and the world with its bright, sparkly colors for a brief period of time.

I would have felt left out if I hadn’t participated in it. Trying (and photographing) a drink that’s based on a creature that’s all about being unique and different from everyone else became all about jumping on the bandwagon and doing what your friends were doing. I’m not sure that reflects too well on me or the society I live in but there you have it.

When I went to Starbucks today, I noticed that the unicorn frappucinos were all sold out. Not that I would have had another one anyway. Once was enough. If I had another one I have a feeling my stomach would file for divorce. It also seems appropriate to let my sampling of the unicorn frappucino be a unique once in a lifetime experience.

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Julia the Autistic Muppet

Last week Julia the Muppet made her debut on Sesame Street.  Julia is autistic. Actually Sesame Street uses the term ‘people with autism’. That makes some people mad because the majority of autistic people allegedly prefer identity first language over person first language (ie, Autistic person over person with autism) I don’t really feel comfortable referring to myself as either so I say I’m on the autism spectrum. I don’t really care how anyone else refers to me as long as its not derogatory though. While I understand that person first vs. identity first language is an important issue to some people on the autism spectrum, it’s never been an important issue to me so I’m not bothered by the fact that Sesame Street uses person first language.

Nothing about the portrayal of Julia really bothers me. I thought it was very well done. I like that Sesame Street chose to make its autistic muppet a girl. There are many more boys diagnosed with autism then there are girls diagnosed with it. When I was in a program for young adults on the autism spectrum I was one of three girls in the program with about twenty guys.

Obviously girls with autism do exist and because boys make up the vast majority of autism diagnoses being a female on the spectrum can be very isolating. Therefore it’s nice to see an autistic female represented in the media so girls on the spectrum can feel less alone and the stereotype of autism as an exclusively male disorder can be challenged.

I recognize myself in Julia. She has some of the same mannerisms I had as a child and continue to have as an adult. Just like me, Julia flaps and jumps. Just like me, Julia has a tendency to brush people off when they first try to interact with her and give them the impression that she does not like them.

Julia is four years old. I watched Sesame Street when I was four. At the time I did not even know what autism was, much less that I might be on the autism spectrum but I did know that I was different from other kids. I would always be asked why I flapped and jumped and I never knew how to answer that question. It was just something I felt compelled to do.

I read an article by someone who has autism that described the first Julia episode of Sesame Street as having a subtle brilliance to it. A blog that reported on that article said that Julia the Muppet has the potential to be groundbreaking. I agree with both of those assessments.

While there are some striking similarities between me and Julia, there are some striking differences between the way Julia is treated on Sesame Street as a result of her differences and the way I have been treated as a result of my differences. As a small child I never got the message that my flapping and jumping were acceptable behaviors and I certainly didn’t get the message that there was anything to appreciate about such behaviors.

I got the message that flapping and jumping were abnormal, unacceptable behaviors. I got the message that I should stop doing it because it’s not what normal people do, it bothers normal people to see it and it would cause normal people to ostracize me. I had parents of my friends forbid those friends from playing with me because they worried my flapping might somehow be contagious. I was luckier than many kids on the autism spectrum in that I was not teased or bullied much by my peers but it did happen on a few occasions. One of the most memorable instances occurred when I was flapping on the playground. A girl came up to me and said in a derisive manner “What’s with the flapping? Are you a bird?” Then she imitated my movements in a mocking, taunting, manner.

On Sesame Street Julia’s peers and mentors are all accepting and accommodating of her differences. Since Julia’s sensory issues make finger painting uncomfortable for her, she is given a paintbrush. When the sound of the sirens cause her distress she is taken to a quiet area and guided in deep breathing exercises. At first Big Bird is upset and confused by Julia’s behaviors but once the others explain Julia’s autism to him he comes to accept and appreciate Julia for who she is.

Sesame Street explains autism in a simple yet masterful manner. When Big Bird asks what autism is, Alan (the adult human in the scene) says that for Julia it means she may not answer you right away. The words ‘for Julia’ are key because they show that autism affects everyone differently.

When Julia is upset by the siren Big Bird says that it wasn’t that loud.  Elmo says that for Julia it is. I don’t have the extreme sensitivity to noises or textures that Julia and many people on the autism spectrum do but it sure was nice to see it acknowledged that Julia perceives the world differently than neurotypical people. It was nice to see her perceptions and the distress she experiences as a result of her heightened sensitivities taken seriously and treated as being valid.

The best part of the episode is that it preaches not just tolerance for autism but appreciation for it. Big Bird isn’t urged to be friends with Julia just for the sake of being kind and inclusive. He’s urged to be friends with her because she has positive characteristics that make her a good friend to have. Elmo and Abby describe Julia as being creative and lots of fun. They say that Julia loves to play with her friends, thus shattering the myth that autistic kids do not want friends.

Alan tells Big Bird that Julia does some things he may want to try. Big Bird initially questions why Julia is playing tag while bouncing up and down because he’s never seen tag played like that before but when joins Julia, Elmo and Abby in a game of boing tag, he discovers it’s a really fun way to play.

Julia is not entirely nonverbal but she doesn’t talk much, which is something Elmo states in a matter of fact, accepting manner. When Big Bird remarks that Julia is not like any friend he’s ever had before, Elmo and Abby say that’s true but none of them are the same either- Elmo’s a monster, Abby’s a fairy and Big Bird’s a bird.  Julia’s flapping gets compared to a bird’s but not in a derisive manner like mine was. It’s pointed out as something she and Big Bird have in common. It’s also pointed out that they both like to sing and play.  This shows kids that being of a different neurotype than their peers need not be a barrier to friendship. They can still find common ground and as Alan says the way in which they play doesn’t matter. The important thing is that they’re friends playing together.

The episode ends with a song about how “We can all be friends” with lyrics about how our differences make us amazing and are worth praising. This is a huge step in a different and right direction.

Up until recently autism was virtually never spoken of in those terms. It was framed as a devastating disorder that robbed its victims of the chance to have lives that were meaningful,valuable or fulfilling. The symptoms and behaviors associated with autism were regarded as being extremely problematic. The goal was to hide, suppress or eliminate those behaviors. The goal was to make autistic people behave more like neurotypical people. That was seen as the way to best serve autistic people and society in general.

The onus was on the autistic people or their caregivers to change their behavior so that they would be accepted. At best someone who flapped, jumped up and down and didn’t communicate verbally would be viewed with pity and compassion. They would not be viewed with respect or admiration (unless it was for ‘coping with’ or ‘overcoming’ their autism.)

To suggest that autistic people were fine the way they were, that they didn’t need changing, that it was neurotypical people who needed to change their attitude toward autistic people was unheard of.  To suggest that there was anything desirable about the way autistic people behaved and that neurotypical should consider emulating some of their behaviors was unthinkable.

Yet Sesame Street just did all of that. And it could make all the difference.

It would have made a difference to me as a child and it makes a difference to me as an adult. When you’re constantly told that your natural ways of behaving, communicating and interacting with the world are wrong, abnormal and in need of change, it takes a huge toll on your self esteem.  I didn’t know any other kids who acted like me and to see a kid in a popular TV show who acted like me and was accepted and admired for who she was would have improved my self esteem.

It may also have improved the way my peers treated me. Instead of seeing me as someone who was weird and confusing, someone they had no frame of reference for, they may have seen me as resembling the beloved character Julia. Instead of seeing my behaviors as something to tease or question me about, they may have accepted and even joined me in them. Instead of assuming that I didn’t like them because I wasn’t initially responsive to them, they may have realized that my brain was just wired differently than theirs and continued to reach out to me in different ways like Big Bird did with Julia. Maybe like Julia and Big Bird we would have come around to each other and developed a friendship.

One of the criticisms I’ve seen hurled at Sesame Street is that they have others speaking for Julia rather than having her speak for herself. First of all, Julia is only four years old. Explaining the details of one’s disability to someone they’ve just met, would be a difficult task for many four-year-olds. It’s not at all unusual for kids that age to prefer to have trusted adults or even peers explain certain circumstances for them. Alan says that Julia likes people to know she has autism so it’s made clear that her wishes and desires are being honored.

Second, while many autistic people do have the ability to verbally express complex thoughts, many do not. Both forms of autism are valid and it would be impossible to have one character encompass all the different forms autism can take. I have never had impaired verbal abilities but while at four I may have had the ability to explain my diagnosis to strangers (if I’d actually had an autism spectrum diagnosis at the time), I would not have been willing to do so. At that point I was so shy I’d been diagnosed with elective mutism.

Another criticism I’ve seen is that the Julia episode is geared towards neurotypical kids, rather than autistic kids themselves. Considering the pro-acceptance message it sends towards neurotypicals, I can’t take issue with that either. It would be nice if in the future some episodes are geared toward autistic kids themselves but if we’re being honest, this is a neurotypical’s world and neurotypicals are the ones who hold much of the power. Therefore if we want to inspire change in the quality of life for those on the spectrum and the way they are treated by society, we have to inspire change in the views and actions of neurotypicals towards those who are autistic.

I’ve watched the Meet Julia clip of Sesame Street about a dozen times and it fills me with joy each time. Kids who watch it could learn a lot from it and change their view of autistic people as a result. There are some adults in my life who could also stand to watch and learn from it but unfortunately I know it wouldn’t change their views. They’ve become set in their views and ways.  Yet kids have the capacity to be much more tolerant and accepting than adults, especially if they are taught acceptance and tolerance from an early age.

At one point in the scene Alan explains that Julia flaps her hands in excitement. A lot of people think I flap my hands because I’m excited or am experiencing some other intense emotion but usually I’m just fulfilling a physiological need and it has nothing to do with emotion.  Yet after I watched the Meet Julia episode of Sesame Street and thought about what it could mean for the future of those on the spectrum, I did flap my hands in excitement.

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When the dog bites, when the bee stings, when I’m feeling sad…

My dog Lily bit someone the other day. When a man came to install a new dishwasher she barked her head off at him like she always does at strangers who enter the house, especially if they’re carrying tools in their hands. The man was assured that she was all bark and no bite because up until then she had been.

When the guy was leaving the house she ran up behind him and bit him on the leg. She tore his pants and drew blood. The man was very sweet and understanding about the incident and he says he’s not going to report it but it’s still pretty scary. When I told people about what she did the reactions ranged from “Lol!” to “Are you going to put her down?”

As of now there are no plans to put Lily down but given my history of losing dogs under tragic circumstances, I can’t help but fear that it’s going to come to that. My first two dogs were both killed by cars, my next dog died of cancer and my last dog suffocated on a chip bag. The universe seems to enjoy torturing me by snatching my dogs away from me in shocking and devastating ways, so why not have my next dog have to be euthanized for biting?

I’m trying not to be all doom and gloom about this though. Lily seemed genuinely devastated by the disapproval she got from us as a result of her crime and although our dog trainer usually doesn’t work with dogs who have bitten, she’s agreed to work with Lily. She said the first step in reforming her is to stop finding her stubbornness and sassy attitude cute or endearing. Bossypaws needs to be put in her place.

So now we’ve established that the dog bit. While the bee didn’t sting, I did recently have an encounter with a bee. I heard an angry buzzing sound coming from my ceiling. When I looked up in to my air vent I saw a bee sticking its feelers out. I left the room and when I came back I could still hear angry buzzing but it was no longer coming from the vent. I couldn’t find the bee though.

I know bees tend to live in colonies so I had this terrifying vision of a swarm of bees coming down the vent and stinging me all over. An exterminator visit was arranged and my mom said that when the exterminator showed up I should lie and say I’d seen more than one bee so I’d be taken more seriously. I have a hard time lying about anything but I figured I could manage a little white lie about bees. Yet when the time came I found myself unable to do it. I admitted that I had only seen one bee.

This one bee could not be found and a search of the vent revealed no further bees so the exterminator packed up his tools and left. Lily barked her head off at him but luckily she didn’t bite that time. A few hours after the exterminator left I found the bee in my curtains. After it was captured in a cup and determined to be a harmless bumblebee it was released in to the wild.

A few days after my bee encounter I had an ant encounter. This time there really was more than one ant. There were lots of them crawling all over the floors and furniture. This morning I had a spider encounter. Thankfully there was only one spider in my doorway but one spider in my doorway is one spider too many.

In the grand scheme of things pesky insect/arachnid encounters are not that big a deal and I have faith that Lily will be redeemed but I find myself feeling sad a lot about my life in general. If you’re familiar with The Sound of Music, you know that the solution to that is to simply remember my favorite things.

Whiskers on kittens, cream colored ponies and wild geese that fly with the moon on their wings could all be a source of comfort to me because while I’m obviously not a big fan of insects or arachnids, I love all other animals.  Speaking of animals, April the giraffe finally gave birth yesterday and I got to watch it live. At first I was watching a giraffe walking around with legs hanging out of its butt, which was a little weird but the moment when the calf was born in an amniotic gush of glory was beautiful and so satisfying. The moments after birth were adorable. It’s amazing how a baby giraffe is able to accomplish in one hour what it takes a human baby one year to accomplish.

Raindrops on roses are nice too. I love seeing all the beautiful flowers that are blooming now. I mentioned in a previous blog that April’s erratic weather patterns mess with your head but it was really warm today so perhaps our silver white winter has melted in to spring. While I haven’t had any crisp apple strudel or schnitzel with noodles lately, I’ve had plenty of other delicious dishes, all of which I’m sure I’d misspell.

While today was not a holiday that brought sleigh bells or brown paper packages tied up in string, it was a holiday that brought bunnies and eggs of all colors tied up in Easter grass. While we arrived at my sister’s house so late that the Easter festivities were over by the time we got there, I still had a good time. After my dad had been chastened for running so late, I got to see him properly chastened for ruining my Disney World trip by hating Disney World. Then I got to see the family dog going down a slide and I caught it on video. What more could I ask for?

Happy Easter!

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A Florida Vacation: Epcot

The next day as I was getting out of the hotel shower I noticed to my alarm that there were words written in the condensation in the mirror. One word was ‘you’ and the rest of the words were undecipherable. Of course my mind made the message say “YOU ARE GOING TO DIE”. The message definitely hadn’t been there when I got in the shower and no one had entered the bathroom while I was showering so I was pretty freaked out. I was relieved to learn that the laws of chemistry, physics or whatever science it is that I don’t understand said that the words were most likely written on the mirror before I showered but it took the steam from the shower to make them visible.

The next day was to be our last day in Orlando and we had a conversation about how we would spend the rest of our time. Since my feelings towards Disney World were very different from my traveling companions’ feelings towards Disney World, the conversation got kind of heated. Gabrielle said that tomorrow she definitely did not want to go to Disney World.  My father and brother agreed. The thought of not going to Disney World the next day was anathema to me and since I’m a big animal lover missing out on Animal Kingdom would be a real bummer. Still, my brother insisted that since he hated Disney World and his vacation time was limited he deserved a Disney-free day.  That night my father was having dinner with some business colleagues. My brother had the option of going to the dinner or going to Disney World with me.

Most people would have immediately chosen Disney World without even having to think about it but for my brother the decision involved figuring out which one he considered to be the lesser of two evils. Eventually I came up with a compromise. I said “How about this- you go to Disney World with me tonight and I’ll do a non-Disney activity with you tomorrow.” “Deal” he said and we shook on it.

I managed to get us all to Epcot at around noon. My friend Mary was visiting Disney World to run in a Princess Marathon so we met up at Epcot. We had our picture taken together and I captioned the picture “The people who actually like Disney World.”

Mary visits Disney World frequently so she’s picked up some pointers on how to make the most of your experience there. She told us that you could reduce your wait time for Test Track by entering the single riders line. We did that and afterwards we went on some space ship ride. The ride offered two options: an intense version and a less intense version. I went for the intense version while my brother did the less intense version with Gabrielle. My brother complained that his version of the ride was boring and I complained that my version left me feeling nauseated.

Then we saw some show about colors. My brother and I snickered about how lame it was. After that we moved on to The Sea section of Epcot. We went on a Finding Nemo ride and since we rode in shells I busted out the camera on my phone and took a shellfie. Upstairs there was an aquarium with various marine life including manatees. This prompted my father to start calling Gabrielle Manatee and he periodically referred to her as Manatee for the rest of our trip. If I was called Manatee I would take it as a disparaging comment on my weight and would be insulted but I think my father meant it affectionately.

After The Sea we split up with my brother and me going in one direction and my father and Gabrielle going in another direction. My brother and I were both hungry so we went to The World Showcase to find a restaurant. “What country do you want to eat in?” my brother asked. “A country in which the food is not spicy” I replied.  France seemed like a good bet for non-spicy food so we went to a French restaurant.

When my brother noticed that I wasn’t eating my salad he pointed out that I hadn’t had any intention of ordering a salad but when the waitress had asked me what salad I wanted I panicked and chose one. It was similar to what the waiter had done with my dad and the ribs last night. It was another example of Disney employees sneakily tricking you in to paying too much money for things you didn’t want or need and this was why he hated Disney. I could not argue with him there.

After our meal we went to The Land. We saw a boat ride with a very short wait so we hopped on. We assumed that since the wait was so short the ride would be lame but it was actually pretty cool and interesting. Then we went on Figment’s Imagination Ride which is the kind of childish brightly colored ride full of song and dance that I love and my brother hates. After that we saw a compilation of 3-D Disney animated shorts. They were so cute and funny that even my brother enjoyed them.

When we met up with my father and Gabrielle again we discovered that in our time apart we had gone on the same rides. Now it was time for my father and Gabrielle to leave and get ready for the business dinner. My brother had agreed to continue doing Disney with me but I told him I didn’t want to stay at Epcot. I wanted to go back to The Magic Kingdom to do some of the classic rides we hadn’t gotten to the first time we were there, especially the haunted mansion. My father said we couldn’t do that because the tickets only allowed us to go to one park a day. I told him he was mistaken about how the tickets worked.

As we headed off to The Magic Kingdom  (which I’ve just learned is now called Magic Kingdom; ‘The’ has been removed from several of its signs)  I felt excited. This was going to be fun.

When we reached the parking lot we had to pay $20 for parking despite the fact that we were only going to be there for a few hours. They charge a flat rate for parking each day, regardless of the amount of time you’re spending in the park. It took us a while to find a spot but we eventually found one in the Ursula section. Then we had to take a trolley to the monorail. Then we had to wait among the crowds for the monorail. Then we were packed like sardines in to a monorail full of loud children and taken to the park entrance. Then we waited in a very long line to be admitted to the park. I knew it would all be worth it in the end though.

Finally we made it to the front of the line. After having our bags checked and our fingerprints verified, my brother inserted his ticket in to the machine that would admit us in to The Magic Kingdom. It didn’t work. He tried it again. It didn’t work that time either. He tried a third time. It still didn’t work.

A Disney employee came over to investigate the problem. After scanning my brother’s ticket she said to him “This ticket is only valid for one park per day and you’ve already been to Epcot today.”

A wave of crushing disappointment came over me. This was supposed to be the happiest place on earth but I wasn’t feeling very happy. In that moment The Magic Kingdom lost some of its magic for me. In that moment I was able to see Disney World through my brother’s eyes: A world full of long lines, crowds and hassles, a world where you were tricked in to giving up ridiculously large amounts of money for rewards that didn’t pay off.

That Disney employee could have said to us “Look, your ticket isn’t good for The Magic Kingdom but we know you came all the way here, paid for parking, and fought your way through crowds. Since there are only a couple of hours left until The Magic Kingdom closes we’ll let you in tonight.” You’d think that would be in the spirit of what the place was supposed to be about. Of course she didn’t do that though. She chose to follow the rules, rules made by a bunch of dirty, sneaky money grubbers.

I turned to my brother and said “Fuck Disney World. Let’s see what else Orlando has to offer.”

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The Cruelty of April

T.S. Elliot said that April is the cruelest month and he was right. The main reason I find it so cruel is because its weather patterns are so variable and erratic that it messes with your mind. One day it’s sunny and warm. You’re wearing shorts and it feels like spring has arrived. Then the next day it’s freezing and you’re wearing a winter coat.  The violets and cherry blossoms you’re surrounded by tell you it’s spring so you expect to be strolling thorough sunshine but instead you’re shivering in the wind. Then you’re forced to acknowledge that winter isn’t ready to give up it’s hold on the world just yet and it’s not truly spring.

Since April likes to fool people with its weather patterns, I guess it’s only appropriate that the 1st of April is April Fools day. I’ve become a bit of an April Fools Day grinch. I think some of the pranks that are intended to be funny are actually cruel. I’m sure those “I’m pregnant!” jokes are not appreciated by people who have recently experienced miscarriage, abortion or infertility. I think most April fools jokes are just lame and stupid. Perhaps I don’t have any room to be criticizing anyone else’s April fool joke since as a kid my idea of an April fools joke was pouring fish food on the eggs my brother was cooking for breakfast.

On April 1st I posted on Facebook that I was suspicious of everyone’s statuses today but I only encountered two jokes in my feed. One guy was grilling a baby manatee and another guy was getting penis reduction surgery.  I also encountered a meme that said April Fools Day was cancelled this year because no prank could possibly rival the ridiculous shit that’s really going on in the world. Seriously, I think that’s the main reason we didn’t see many April Fools Jokes this year.

April also brings with it the holidays of Easter and Passover. Since I have family members who are Christian and family members who are Jewish I get to celebrate both holidays.  Holidays can be joyous occasions but they can also be fraught with tension. On the first night of Passover someone who was sitting next to me during the Seder turned to me and said “Does it bother you to hear yelling coming from all sides of the table like this? It bothers me.” Hopefully my Easter family gathering will be more civil. Not that I’m complaining about the Seder. The delicious food made the bickering worth it.

The middle of April brings us Tax Day.  Ah, taxes. They and death are the only thing that can be guaranteed in life. It’s hard to say which is more unwelcome.

The other reason I find April to be a cruel month is because its Autism Awareness Month and it’s prom month, which means there are articles circulating around the internet about high school students who were kind enough to take a disabled kid to prom. I’m sure it’s obvious to everyone why I would consider crappy weather, lame pranks, family feuds and taxes to be cruel aspects of April.  I’m sure it’s less obvious why I would find Autism Awareness Month and articles about taking the disabled kid to prom cruel. In fact I’m sure many people are baffled as to why I would find those things cruel because they seem kind and wonderful.

Those things do tend to give able bodied,neurotypical , “normal” people warm fuzzy feelings and the sense that they are helping those who are less fortunate but most disabled people just find them hurtful and insulting. They essentially boil down to slacktivism and inspiration porn. I’ve ranted before on this blog about how much I hate both of those things.

If you’re going to use autism awareness month to actually research autism, to listen to the perspectives of people who are actually autistic, to contribute your time or money towards organizations that have the support of people who are actually autistic, that work towards securing support, employment and acceptance for people on the autism spectrum, then good for you. You are making a positive difference in the lives of autistic people.

That’s not what most people do to honor autism awareness month though. Most people light their Facebook profiles up blue and post a few autism facts accompanied by a picture of a puzzle piece.  These facts come from Autism Speaks, an organization that is widely feared and hated by people who are actually autistic. They paint autism as some mysterious, horrible, devastating disease that must be eradicated. They suggest that autistic people can best be helped by being cured or being taught to “act neurotypical.”

Well, many autistic people, especially the ones who are using Facebook, do not want a cure and their goal in life is not to pass for neurotypical. What they want is to be accepted for who they are and to have their special needs accommodated. You are not helping these people by posting blue lights and puzzle pieces. By perpetuating the idea that they have a horrible disease that must be cured you are harming them.

Some people do not see autism as a disease or a disability but as a different way of being. Some autistic people see autism as an essential part of their identity that they would’t want to change.  Imagine how you would feel if you were constantly told that you’re way of being was tragic, abnormal, problematic, must be done away with.

What’s so aggravating about autism awareness month is that for the most part it is clearly not geared towards autistic people themselves but towards their loved ones, their caregivers. those who work with them, those “normal” people who supposedly need to be more aware of them.  Autistic people are silenced, discounted, made to feel invisible by a campaign that is supposed to help them. They do not need your blue lights, your puzzle pieces or your “awareness.” They need your support, your understanding and your acceptance.

As for those heartwarming, inspirational news stories about the popular high school kid who was kind enough to take that disabled kid to prom, I do not find them heartwarming or inspirational. I find them patronizing and nauseating.

That Kendall Jenner Pepsi ad was immediately criticized as being tone deaf and insensitive. Within 24 hours that ad had been pulled. Yet those tone deaf insensitive  articles that hail people as heroes for treating the disabled with basic human decency appear over and over again year after year.

Once again, those articles are clearly not geared towards disabled people. The disabled person is just an object used to make the “normal” people feel all warm and fuzzy. The fact that a popular jock went to prom with the disabled kid is touted as an example of human kindness and goodness.

The implication is that that popular kid made a huge sacrifice by taking his disabled classmate to prom, that he did something really out of the ordinary, that not many other people would be willing to do that, that he made that disabled kid’s night really special, gave her something she’s never experienced before. The implication is that the disabled girl had so much fun at prom and while the popular kid didn’t have as much fun at prom as he would have if he’d taken a “normal” person, the feelings of gratification he got out of doing something kind for the disabled girl made it all worth it.

If we were talking about the popular football player taking the unpopular band geek to prom, no one would dream of writing an article about it. People would realize how incredibly humiliating it would be to that band geek to be publicly turned in to an object of pity.  Yet turn that band geek in to a a girl with Down Syndrome and it becomes okay to write an article like that.

The implication is that the disabled person doesn’t have enough cognitive awareness to realize that they’re being turned in to an object of pity, that they won’t Google themselves and feel embarrassed by the way in which they are portrayed. The implication is that they’re just so full of gratitude towards that popular kid for giving them a chance to escape their sad disabled life for one night and get to experience what normal people experience, that nothing else matters.

It makes me sad and angry that so many people need it explained to them why articles like that are so offensive.

On a lighter note, just like April is a cruel month, April is a cruel giraffe. Just like the month of April messes with your mind by giving you false hopes and expectations so does April the giraffe. I’m a celebrity baby names fanatic so I’m used to impatiently waiting for a seeming eternity for celebrities to give birth (and often longer after that for them to reveal the name) but this giraffe is worse than any human celebrity I’ve baby watched. She’s worse than Jessica Simpson and Kate Middleton combined.

On February 23rd live cams were set up and it was said that she would give birth any minute. It’s now almost April 13th and she still hasn’t given birth. I’m starting to wonder if something fishy is going on. Is she not pregnant at all? Is this some media stunt? An attempt by the Trump administration to distract us from their scandals?  I don’t know. I just know that April is cruel.

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