Tag Archives: autism

FB Group: Autistic Adults

Being autistic is a challenge that can be very trying even on your best day. From my experience, people don’t generally think like I do or even process information the same way I do. Bluntly put, I am the odd man out when compared with society. Due to my trouble with noise, I cannot live in a city or town; in fact, I live nearly twenty miles from the closest thing that you could consider to be a town. Even living where I do, next to someone that will not control their barking dog is emotionally draining on me.

Lately, I’ve been very depressed because of various issues going on in my life and I thought that maybe I could join a support group for people that were autistic and hopefully find some people that were a little more like me. So I searched for a few groups on Facebook and joined a couple that I thought I would mesh in. One of these groups was for LGBT autistics, and while the people there didn’t talk much I found that almost everything was geared towards people with Asperger’s, which is on the ASD scale, but it just isn’t how I am identified. Due to this, I quietly left the group after a little lurking because it didn’t feel like it was for me. If the group is still around when my son is older then I’d probably introduce him to it, but it just wasn’t my cup of tea.

Another group that I joined was called Autistic Adults, which you can find here if you’re interested.

I joined this group because I thought it was great to finally find a group of adults, that are supportive or so I thought. I asked on the group if anyone else had trouble getting a diagnosis as an adult. I had a few comments on the troubles that other people in the group had getting a diagnosis as an adult and had pretty much resigned myself to a long drawn out battle with doctors that don’t want to give me an answer or diagnosis. I’ve already been screened and the result was positive.

The one of the admins ( I had no clue he was an admin at the time.) chimed into my conversation and made suggestions that I’ve already tried. I told him this, and it seemed like he suddenly had a bone to pick with me. First, he had tried to suggest something that I had already done, which was get a screening. I had stated in the first post, that I just needed the official diagnosis and the screening was already done.

You can see that here in the screenshot.

 

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After this post, this guy kept pushing for me to call doctors (this is after the group had had a discussion about telephone conversations and I had admitted that talking on the phone gives me panic attacks, even thinking about talking on the phone can be triggering.) I told him that there were literally no doctors in my area that would diagnose an adult with autism that was respectful and that I couldn’t travel any distance because my SUV (Good Old Bessie) was currently broken down, but this wasn’t good enough of an answer it seemed.

After this, the guy told me that I should have my friends take me to the doctors.

I laughed. I’ll admit it. I fucking laughed at the computer screen when I read that, I laughed because crying would hurt too much. I told him I don’t have friends, and that I lived twenty miles from the nearest town.

I don’t have friends…something that has been so ungodly painful since June, just thrown into my face. So of course, I’m going to be annoyed with this guy now. He had to be right and I had to be lying, at least, that’s how it seemed to me, how could anyone not have friends?

If that wasn’t bad enough then this guy starts trying to tear apart everything I’ve said to other people. I present to you:

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Not that it is any of this guys business, but yes, because of transportation I haven’t been able to see my therapist since October, something that has not been very good for me.

It was after that post that this guy starts privately messaging me and demands to know if I use drugs and then accused me of using a fake name!

asshole

So yeah, after you accuse me of using a fake profile name, I’m going to be pissed. Using profile names that don’t match the name on their driver’s license has caused A LOT of transgender people to have their accounts shut down. My legal name is Aydan Keeley O’Connor and I’m damned proud of it, I fucking paid enough for it.

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It was clear this guy didn’t care what was “going on with me”, because if he had his opening message wouldn’t have been questioning me about drug use.

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Now, I shouldn’t have to explain this to an admin of a Facebook group, but because he isn’t my “friend” my screen name of AydanKOConnor (which is the link for my FB page) is going to come up, not my name. Then he began to question what I write? This guy didn’t introduce himself to me when I first joined that page several days prior, and now because I didn’t idolize him as some god he was harassing me and demanding to know about me? I don’t think so. I stopped talking to him, but I did message one of the other admin and creator of the group when I first started having trouble with him. She did nothing.

My wife even wrote her and other admins and this was the response she got.

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From what my wife understands this guy was telling other admins that I was using a fake name.

Why? Because he didn’t know how facebook works. If you’re not my friend, you’re not going to see much on my page. However, because this David fellow thought I was using a fake name because my account name was showing up I was removed from the only group that I had found to be catered to adults with autism.

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See the difference? AydanOConnor was already taken when I tried to set my facebook username so I used AydanKOConnor instead. K as in Keeley which is my legal middle name.

I feel like the real problem is this though:

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Right at the top of my groups (which are viewable for all) is the fact that I belong to an LGBT group for ASD. The reason I say this is because when my wife wanted to know why I was so upset ( this put me in meltdown mode) and I shoved my phone at her, and after she read the messages she sent this guy a message of her own, wanting to know why he was doing what he was doing.

He started by belittling her and accusing her of using a fake name as well, and when my wife sent him a picture of proof of who she was, he wanted to know if she (my wife) was really me. So my wife sent him a photo of my ID, and then he started asking for personal information.

So because of this gem, I almost had a complete meltdown on top of teetering back and forth on being suicidal. This is not the way you’re supposed to treat each other in a support group.

I wanted to share this with anyone that reads my blog because I don’t want it to happen to anyone else. We don’t need anyone TG suicides or suicides period for that matter, and if I didn’t have such a wonderful wife, this would have seriously pushed me to end it all.

 

Reflection

I will be glad when 2015 is over, this has been the worse year of my life by far. The entire year I’ve spent dealing with one clusterfuck after another, and the day before Christmas was just hell. I am depressed and have to keep reminding myself what I have to live for. I found out just how alone I was really was this year and that I really don’t have any friends, just people that wanted to use me for whatever they could get from me.

The first half of the year was rough, but I had hoped that it would get better. It really hasn’t gotten any better.

I tried my best to get a support group for the transgender community going that would encompass anyone that considered themselves to be transgender. The few people that were interested were interested in the clinics that I wanted to set up after incorporating into a non-profit, but no one wanted to help or do any work towards those goals.  

The few so-called friends that I had at the beginning of the year showed their true colors this year. It was okay for me to always drive into Richmond or further to see them or hang out with them, but they could never be bothered to come to my place. When I mentioned this to them it was always “well you’re so far away”. I’m so far, yet I can drive to them but not the other way around?

What hurt the most though is when I was told by my so-called best friend that he didn’t have the time to be my friend. Yet he had the time to abandon his daughter at her last music recital of the year to drive to Washington DC for a dinner.

So I’m left with only the people I occasionally talk to on Facebook as my friends. I can’t begin to tell you how lonely that is. I haven’t gone out since June, even before then really if you want to count going out as doing something “adultish”. Twice this year I thought we were going to lose our house. A little voice in the back of my head kept whispering ‘back to the streets for you, you incompetent dumbass’.

I’ve been given a “pre-diagnosis” of ASD, but I still, after nearly nine months, can’t find a doctor that is willing to give me a formal diagnosis because I’m an adult, and I should have had that diagnosis before now. Should have. Story of my life, there is a lot of things I should have had access to as a child but I didn’t so now I have to face life as an adult that can’t take care of himself.

I’ve been trying to get disability since June, I was told by the lawyer my insurance company contracted it would take no more that six months. Well here we are in December and the worker for my case isn’t going to decide whether or not to send me to “one of their doctors” until January. So much for six months.

I can’t work. Being around people gives me two things; panic attacks and thoughts of suicide. I feel like a total failure. The one thing I’m supposed to be able to do I can’t.

Of course in May my SUV was vandalized because I spoke on local television about being transgender. Nothing happened to the person that vandalized my truck, in fact they are most likely still walking around Amelia County free as anyone else and rather proud of the hatred they perpetrated on me and my family just because I’m different than them.

Then I was profiled by police not once but twice because of the equality stickers on the back of my SUV. This was when I was using my SUV as a ‘Farm Use’ vehicle and had the corresponding tags on it. Both times the officers didn’t know the laws and threaten me and my wife. This has contributed to worsening panic attacks every time I see a police car now. Even if I’m doing nothing wrong I start panicking when I see flashing lights or a squad car. The current climate with police getting away with murder, literally, doesn’t help at all either.

I thought that things were going to get better when I got back in touch with my parents after two years of not talking. They didn’t like the fact that I being transitioning and kicked me, my wife and our two children out of the house that my wife and I put the down payment on. We had lived there less than two months.

I thought that my relationship with my parents could truly be mended and we could all be a family again. I guess that was just wishful thinking on my part. My parents allowed my brother to treat me, my wife and my two children like trash. He yelled at us, called me a fat lesbian, a stupid bitch, a faggot, queer, and nearly every other slang for LGBT that he could think of, and my parent’s response was for me to just ignore it. They even gave him and his wife a house! Can you believe that?! A fucking house, when they took mine from me.

I tried to look past all of that though. I really did. Then my mother deleted me from her Facebook friends, because my liberal posts make her pissed off and she was tired of being pissed off. It hurt, and it spoke volumes as to where I stand in their lives. To me it said I had no place in their life. They support my brother who refuses to work. He is in no way disabled, he just refused to work. He had his gamer friends raise almost $10,000 to send him to Vietnam to meet the woman that became his wife. He didn’t work for it, and yet I’m the bad person in my parent’s eyes.

To make my year even worse, I wasn’t able to give my kids what I wanted to get them for Christmas, well…Yule. I was barely able to scrounge up $60 bucks for both of their presents. Thirty dollars each…And it makes me loathe myself just that much more. I know what it is like going back to school and seeing all the great things all the other kids got for Christmas, while you got nothing.

See, my parents decided that they didn’t want to do Christmas any more. My mother claimed it was because she didn’t want to see us disappointed when we didn’t get what we wanted, but the last Christmas I remember with them I was so happy because I got a guitar. The only thing that I had been wanting all year because at that time I idolized Garth Brooks and wanted to play guitar like he did. I was devastated after Christmas though, because my guitar had a fault in it and the neck snapped off, it was supposed to be replaced but never was…

So I know that feeling, I know what it’s like to be made fun of because your family doesn’t celebrate the coolest kid holiday of the year.

Even as I sit here writing this, I’m fighting back tears because I don’t want that embarasment, that torment for my children.

Then on Christmas eve, I find out that my truck is broken down to the point where it can’t be driven. I need about $1200 worth of parts to get it road worthy so it can pass inspection next month and I don’t have it. So now we’re stranded almost twenty miles from the nearest town with no way to get food or supplies.

I want to give up so badly.

I want this pain, this lonliness, this life to end.

I can’t even get started into the bullshit I’m going through with my mother-in-law. I am grateful that we are able to stay with her, but after two years I feel more like a slave and inconvience than a son-in-law.

It all adds to the pain, and I don’t know how much longer I can handle it.

If next year doesn’t get better…it may be my last.

 

Spectrum Transformation Group

Nearly four months ago my wife scheduled an appointment with the Spectrum Transformation Group located in Midlothian, VA for an official ASD diagnosis. When my wife made the appointment she told the person that she spoke to that I already had a pre-diagnosis from screening that I had gone over with my normal therapist. I waited nearly four months, and cut a trip to Texas to visit with my parents short to be lied to, emotionally trampled on and talked down to like I was mentally deficient when I didn’t answer a “therapist’s” questions the way she thought I should answer them.

When my wife made the appointment with the Spectrum Transformation Group in Midlothian she had made it clear that I needed the testing for an official diagnosis and that was the only thing that we were seeking at the time. This appointment was made in July we were told that the appointment was for testing. While the extremely long wait was frustrating, we felt that it would give us a starting place so we would know what options that we had available for me as far a game plan for treatment. We were told that the process would take about three hours to complete, so we made arrangements for my wife and I to be dropped off and our transportation to return in three hours. I had the first appointment in the morning and showed up about half an hour early because not being on time for an appointment begins to throw my entire day off.

While I was waiting for my appointment, the woman that I would end up seeing entered the building, greeted the receptionist and went into the back of the building. I waited patiently for my appointment, which was at 10 am, the time came and passed. While I was waiting, I could hear the employees in the back laughing and joking with each other. It was nearly 10:10 am before the woman that I saw came to get me. She was ten minutes late when she had already arrived and had no previous clients to see prior to me. Had I been fifteen minutes late I would have been charged a $150.00 missed appointment fee, as I had been scheduled for testing which was supposed to be a multi-hour appointment.

The first thing the woman asked me was what did I do to make me think that I had autism. My response to her was that I wasn’t sure exactly what I did, because I didn’t pay attention to them. I then told her that if she wanted to know exact details, that she would be better off talking to my wife because she knew more about it than I did. I had always thought that I was just odd or perhaps even crazy. The woman then proceeded to ask me questions that my wife had already answered during a nearly hour-long telephone screening prior to my appointment. When I didn’t know the answer to a question or how to explain myself she seemed to get annoyed with me. Each one of her questions was followed by automatic uh-huhs like she was a robot and I was inputting code to receive a repeated two-syllable response. It was at this point that I began to shut down. I felt like this woman thought I was a waste of her time, especially when she began to obsess over the fact that I have severe social anxiety and depression. She went on to belittle my regular therapist for “not having done something” about my panic attacks and depression. The way I read this was she thought I needed to be medicated and nothing more.

I was done, and I wanted to leave but finally after thirty minutes of ignoring anything that I said she decided to pull my wife into the session to talk; my wife and my four-year-old niece were in the waiting room. At first the woman tried to get me to leave my niece alone in the waiting room, when I refused to leave a four-year-old child alone she was hesitant to resume the session, but finally did when I told her that I didn’t care if my niece was in the room or not. Her tone of voice towards my niece was more accepting and kind than her attitude towards me.

My wife was finally able to articulate my problems to the woman who then went on to tell us that this was just a screening to see if I needed to be tested for autism. When my wife told her that I have already been through screenings she once more began to insult my therapist by saying that because he had already put me through a screening and said I needed to be tested for an official diagnosis didn’t mean that I really needed to be tested or that I even had ASD. My wife told her that we had been scheduled for testing not for a screening and the woman replied “Well that just isn’t how things work here.”  When my wife and I got up to leave, the woman said that if I really wanted to be tested she supposed they could do it.

We left the office after spending less than an hour in a so-called screening, an appointment that we had been told would take at least three hours, took less than one and was more of an insult and lie than anything else. Needless to say my wife was extremely upset at how I had been treated and the fact that we had been lied to. She began to call other ASD groups in the area to find a new doctor to do testing and left a review on the Spectrum Transformation Group’s Facebook page talking about how we had been treated and how she felt it was very unprofessional.

Within two or three hours, the owner of STG called my wife wanting her to remove her review that she had placed on their Facebook page. My wife went over what had happened in detail with the owner, the owner professed to want us to give them another chance, but when my wife stated that I wasn’t comfortable dealing with the same woman again she was told that the only other person that could do the testing was the owner (the person she was talking to on the phone) and that her caseload was full and that if I wanted testing it would have to be the same woman I saw. Again my wife was asked to remove her negative review from their Facebook page, and my wife responded with “we’ll see”, as she wanted to talk to me first about going back.

Shortly after the conversation between my wife and the owner of STG their Facebook reviews were completely disabled. Rather than allow the negative review on their page which explained what we had experienced they completely disabled all their reviews. They never gave my wife a chance to speak to me about the phone call from the owner; my wife had even tried to edit the review to mention that she had been contacted.

So now after waiting for four months for what was supposed to be testing and an official diagnosis, we’re back at square one. Since the refused to allow anyone to see my wife’s review, I felt it was important that I wrote my own so that other people wouldn’t waste their time or money with this group where each client is just a plus sign in a bank account and nothing more.

Animals

1 bearded dragon
1 African Ropefish
1 green anole
1 angora rabbit
2 guinea pigs
4 cats
6 mallard ducks
1 Orpington duck
6 Orpington chickens

Without my animal friends my family wouldn’t be complete, they are after all in a way some of my only friends. Some people call them pets, some call them companions, I call them my family. Being autistic means my world is vastly different from the some seven billion other people that live on the planet we all call home. The various stimuli: tastes, textures, sounds, smells, and even emotions, that normal humans process and discard end up like a spiraling tornado of confusion in my mind.

It’s hell trying to find socks that feel right on my feet, or shirts that aren’t too tight against my arms or long enough to cover my hands. While things like these may not annoy or even be a concern to other people it can cause me to have a meltdown. If inseam on my socks rub against the side of my toes, or my shirt is snug or ¾ length, it can push me to a breakdown where I’m on the point of destruction, and I can’t help it.

I tell myself over and over that it’s okay if the line on my socks touch my toes or the shoulders in my shirts can be loose rather than baggy. It is okay two cars in front of me just ran the red light because it doesn’t affect me personally. I tell myself to ignore the screaming children and the mother doing nothing about it, ignore the murmuring of voices as people go about their lives, the humming of electronics, the rumble of vehicle engines…

But I can’t.

The clothing starts to hurt and I have to remove it, it feels like I’m suffocating then I can’t breathe. I can’t think, everything starts to shut down and my mind goes into a panic phase where I have to get rid of whatever is causing the problem or I feel like I’ll die.

The noise becomes so loud it is deafening, and all I can hear is that one trigger noise, everything else fades away. It’s like putting your head between two speakers at a rock concert with the volume on MAX. You can only hear that one specific noise and nothing else.

Problems like these make interacting with people or society in general difficult in a face to face situation. Making and keeping friendships is impossible because most people don’t want to take the time to understand me as I try to do for them.

It is because of these reasons that I am so close to my animals, they don’t care if I’m having a bad day and need to be alone. My upset or meltdowns don’t bother them and they are there to comfort me without any judgment. They don’t blame me for problems that I cannot control, no matter how hard I try. It is funny how people refer to each other as animals when they do or act in a manner considered uncivilized; however, they are more judgmental and cruel than any animal has ever been.

Isolation

Nearly every human thrives from having close relationships with other humans; though for some of us these interpersonal relationships are nothing more than elusive fantasies. Having a disorder that inhibits are restricts ones ability to make and keep friendships can leave an individual feeling alone and lost in life. I know this, because I am one of these individuals.

Until two years ago I thought that I was just crazy, I had been diagnosed with bipolar disorder on the basis that I have mood swings on top of severe bouts of depression, and extreme social anxiety. Two years ago, the therapist that I was seeing declared that I wasnt bipolar, I just had gender dysphoria, and after I started hormone replacement therapy (HRT) the bipolar like symptoms should disappear.

I started HRT a little over two years ago and while many of the bipolar symptoms eased, they didnt stop altogether. My social anxiety was still so bad that it was debilitating. About a year ago my wife noticed a trend in what triggered my anxiety and suggested it might be something more than just social anxiety.

When I tried to go back to work, because of management refusing to adhere to agreements that we had made before I was hired I ended up in crisis mode and resigned from my job. It was at that point I started looking for another therapist.

The first therapist that I saw said I was extremely depressed and had PTSD and needed to see a doctor about medication, that was her answer to my issues with no regards to my social anxiety. She was always late seeing me and I didnt feel like she really cared so I stopped going. Shortly after that my wife found another therapist that had experience with the LGBT community and I started seeing him.

My wife and I discussed the issues I was having with him, and he screened me for autism. While he doesn’t deal specifically with autism he was able to give us a list of doctors and organizations to start with to find someone that does.

For thirty years I thought I was crazy or just defective when it came to making friendships and finally this year I had an answer.  Basically, my mind doesn’t work like the vast majority of other people. What ‘normal’ people might not think much of bothers me intensely, and no matter how hard I try, I can’t simply ‘get over it’. In the past when I have made friendship, I have been loyal to my friends to a fault. No matter what, I’ve always done everything within my power to help them. (This was the reason I went to work for someone that I considered to be my best friend. Big mistake.) It seems though, regardless of how hard I work towards keeping these friendships, I’m always left behind and ultimately forgotten.

Having this happen over and over makes me feel like I’m a complete failure as a human being, no matter how hard I work I fail. I end up having no one (other than my wonderful wife) there for me when I need a friend. I have no community, neither religious/spiritual or otherwise. I do not have a place in the transgender community, or a place in any spiritual community. I feel alone, and it leaves , me with a hollow empty feeling that I wouldn’t wish on anyone else.

Cause And Effect

We don’t always think about the consequences of our actions at times, sometimes when we say something we don’t really mean in a heat of the moment we lose friends, or upset our family. Never did I think that the consequences of my actions would end with the severance of the relationship between me and most of my birth family.

Recently in the social media news networks the stories of children, teens and even adults coming out to their families as transgender has been making the rounds. I’m happy to say that more often than not my story has become the exception rather than the rule when it comes to these stories. Nearly ten years ago I told my family, (my parents, two brothers and sister) that I am transgender. Immediately, my younger sister distanced herself from me and avoided having anything to do with me as much as possible. My parents refused to accept that I was transgender and told me that I was just going through a phase, this was ten years ago mind you. My younger brother didn’t seem too sure how to react, but it seemed that he was indifferent on the matter.

After eight years of struggling with my parents, my gender identity and the depression and suicidal thoughts that ensued, I took the first steps to medically transition. At the time I was living with my disabled parents in a house that my wife and I put the down payment on, taking care of them, running a paper route and homeschooling my son. Things were difficult because my mother had begun to blame my wife for me being transgender. When I began to talk to my mother about legally changing my name the tension got worse. I begged her to call me an abbreviation of my birth name, which could be considered masculine. I cited reasoning that all of my other siblings were called by nicknames that were a shortening of their name and she refused, and at that point she began calling me by my full birth name. Shortly after that the name calling began, I was no longer my parent’s child but rather a “big, fat angry lesbian”. For a while she stopped talking to me altogether, it was as if I no longer existed, and she even told my younger brother that I was dead during a phone conversation that I walked in on. I can’t explain how badly that hurt, I could try but the words would fall short.

After telling my parents that I was going to finally begin my medical transition; and had found a doctor things got worse. I thought that I would help ease tension by getting a hotel room for a few days to put a little distance between my family and my parents. While the major stress of the emotional discord was gone for those few days, my parents also decided that I no longer had a home to go back to. My mother called me and informed me that I needed to come get my things because I was no longer welcome there and she was moving my younger sister in. My wife, our two children and I had nowhere to go, so we bounced from hotel to hotel for months. I ended up losing the paper route and we lost our only income.

For months we lived out of a hotel and struggled to with my transition and the disconnection from my parents. For nearly 30 years I thought of my mother as my best friend, someone that I could always turn to or talk to when I was upset and I lost that. We ended up getting an apartment with the help of my wife’s mother and were able to settle into a semi normal state for a while. Around this time my younger brother moved back from Georgia and would come visit from time to time. While he wasn’t always on cue with the correct pronouns, he did try his best. I wasn’t going to fuss at him too much because he was the only one of the family that I grew up with that was trying to accept me for who I was, not what he wanted me to be.

We ended up losing our apartment because of money trouble, no one wanted to hire someone that was transgender and had a two year unemployment space in on their resume (those two years I had spent caring for my parents as a PCA in exchange for room and board) and my wife was disabled. In order to keep our children from living on the streets or in a homeless shelter we moved across the country to live with my wife’s mother in Richmond, VA. This was two years ago, and since then I haven’t been able to see any of my birth family. My parents have changed their phone numbers and refuse to give me their new contact information. The only person that still talks to me is my younger brother. Last month he told me that he’s getting married and that I’m invited to the wedding.

I cried.

He is the only one of my brothers or sister to invite me to their wedding. When my older brother got married, while I did attend he didn’t invite me, I ended up asking him if it was okay if I went and he said he didn’t care. When my younger sister got married I wasn’t invited nor was I welcome. Now, my younger brother wants me to be there at his wedding and I’m struggling to make that happen. My biggest obstacle is funding. On June 30th I had surgery to remove my reproductive organs because of severe pain, and about two months ago I was screened for autism and I hit a lot of the markers for something at the high-functioning end of the spectrum. My therapist doesn’t specialize in autism so I’m struggling to find someone that will test an adult. I had thought that I just had extreme social anxiety, but it would seem that that isn’t the case. In addition to the now four-year unemployment gap, a disability such as autism and being transgender makes you pretty much unemployable in a “right to work” state like Virginia.

I’m still in the recovery stages of my surgery and couldn’t work even if I found a part time or piece job. I won’t be cleared for any work until August 4th at the earliest and I’d need to fly out on August 24th. Twenty days is not nearly enough time to save up enough money to make the trip, especially so because he’s getting married in Vietnam where his fiancé is from.

So I am left to reach out to anyone that will hear me and ask for help. I will need a passport, visa and a roundtrip plane ticket. My brother says that I won’t have to worry about room and board while I’m there because he’ll take care of it. My passport will cost about $210, because I’ll need it expedited, and I was told a visa would cost about $180. The flight is the biggest cost really at $1100 to $1500 roundtrip.
I am at the point now where I will do nearly anything to be able to make it to his wedding and to meet my sister-in-law to be. I’m hoping that if strangers can raise over $20,000 for a man to attend a total stranger’s wedding, I can raise $3500 to attend my brother’s wedding. I’ve started a GoFundMe campaign for anyone that would be willing to help me:

http://www.gofundme.com/yusnng