Monthly Archives: July 2014

This is Autism

It's Bridget's Word

What follows is my contribution to the This is Autism flash blog, where many wonderful people have pieces that bring to life the beauty of divergent neurology. They are positive and glorious and you will be enriched by reading them.

However, bear with me while I am slightly less sunny. I am recovering from a couple weeks of trying to be a part of the world and getting smacked down with one access fail after another. I am cranky.

Suzanne Wright is the co founder of Autism Speaks along with her husband Bob. Last week, she wrote a vile fear mongering piece of hate speech, which is not shocking because fear and demonization is Autism Speaks bread and butter. They have used fear and money to build an empire bent on wiping autistic people out of existence. What shocked me was that this piece struck a nerve…

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Five Days of Positive Things In My Life

On Facebook, for the past five days, i was nominated to write three positive things for each of those five days. I cannot sleep right now due to the warmer temperatures, so i thought what a good idea it would be to compile all that i wrote into a blog,…so i am going to do just that!! 🙂

Day One i wrote:

1) I love my nighttime here, because my street is normally quiet, and i can enjoy my TV, music, writing, and just relaxing.

2) Sunsets with beautiful clouds—i love to photograph them, especially when they are bright and colorful.

3) One good thing about summers in Coastal CA, is our mostly mild Mediterranean climate with the marine influence that mostly keeps the temps cool and mild.

On Day Two, i wrote these things down:

1) My sweet angel caregiver, Connie. I thank her from the bottom of my heart for being here for me, and for caring for and taking good care of me the way she does.

2) The even more spectacular sunset from last night that i got to take pics of…yaaaay!!!!  

3) The nice iced teas with lots of ice and Hi-C fruit punch mixed in that Connie fixes for me to drink every day with my dinner!! 

On Day Three i wrote:

1) Peanut butter M&M’s, and chocolate chip cookies and most things chocolate!! 

2) I finally got my Medicaid forms filled out and mailed off. 

3) My mom and two nice sisters, Connie, my caregiver again, and all of my awesome Facebook Autistic community friends, and other FB friends. 

 

On Day Four, i couldn’t believe how fast these days were flying by, and was beginning to wish i could go on forever; i wrote these things:

1) There is always hope, even after the gravest of disappointments in life. Friends may let us down, but none of us is perfect, and all of us can and will make mistakes, misunderstand, and lash out and hurt others. Because we humans have our bad days, and have issues sometimes. When people hurt us, it is because they are hurt people themselves. Hurt people, hurt others. Though it may hurt us to lose those friends, i am learning to see that the true friends are the ones who will take the time to talk and work things out and still stick by us, even after the blow-up or misunderstanding. If they aren’t true friends, they will turn tail on us, and we just have to have our time of mourning, but then say good riddance, and strive to move on. Which is what i am striving to do. I know i will be okay, because my God has my back in all of this that has happened to me.

2) The cool indie rock alternative, New Wave, underground hip hop, etc., music i listen to, plus being able to discover new music.

3) Having a cool mother who, at age 85, is still in pretty darn good health. But i just so wish she still lived here near me.

 

Today, i wrote:

1) Yesterday i got to get all of my prescriptions from Walgreens. I also got three more pairs of the flip flops i wear, which gives me a total of six pairs in my collection. I now know i will make it through till next summer on flip flops. Being able to get errands done, makes me feel great. 

 

2) I had a very tasty green chile chicken enchilada dinner with rice and beans last night, and only had sour cream to go with the salsa and chips, but not on my enchiladas this time, like i normally do. I am cutting down on little things to help me to get my weight down more. And the enchiladas still tasted delicious without the heap of sour cream. 

 

3) I also got a nice small table fan for my bedroom, which is going to help me alot for when i have to go in my bedroom. My after-showers won’t be spent in a hot and stuffy bedroom anymore, which will make both me and my caregiver very very happy.  We both hate this hot weather that we’ve been having, but…..on the positive side, with this warm weather, we have been blessed with awesome sunrises and sunsets. 

Many of you may of seen people writing these on Facebook. I am glad i got nominated to do this, because unfortunately my life has had alot of dark times, hurts, disappointments and negatives in it, but when we really look and see, there are always those silver linings, those oasises of happy things that bring us joy and smiles on our faces, and warmth in our hearts. I write as a form of therapy, to help me to cope with those negatives that happen. But i wanted to write this too, because yes, all around us, are also those happy things too.

I love each and every one of you who are in my life so very much. I know that i vent alot on my wall, and i thank you all for listening and for being here for me.

I thank the kind friend who nominated me to do this also, because again, i very much needed to also see all the good i do have to be very thankful for that is in my life, and so much more that i didn’t write down. But will always try to do from now on. 

 

When Friends Hurt Friends-In My Defense

Okay, my now ex-friend has had her say, now i will have mine. Names are changed to protect people’s privacy.

A month ago, i lost another friend.

A friend who was a good ally.

A friend who i thought was a very good ally.

A friend who i felt would be the last one to throw me away in the trash…

….and all over a freaking Facebook post that she posted entitled “The Six Toxic Behaviors 

That Push People Away: How To Recognize Them In Yourself and Change Them”. 

 

http://www.linkedin.com/today/post/article/20140620200646-17850276-6-toxic-behaviors-that-push-people-away-how-to-recognize-them-in-yourself-and-change-them?_mSplash=1

 

Sally, not her real name, had posted it on her public wall, and then tagged me in a comment, along with another one of her friends, saying the following: “Melissa Fields (Me) and (Other Person) take this with the intent I mean and not wrong. EVERYONE has traits that can annoy others or drive others away. Reading this, I recognized myself and you two on some of these things (none of us lack empathy, tho). So I thought y’all could benefit from the reading as well.” On a public wall, when she could have sent this link in a private message to me and her Other Friend. Which would of shown respect of our feelings and dignity. I mean, what person would like to have their personal flaws called out in public? 

In the weeks leading up to the above event, though, i could strongly sense evidence that Sally’s and my friendship was headed for disaster. The first incident was when she had posted my GoFundMe appeal page, and one of her friends, Friend T, posted right off the bat that i could be just another scam artist. Whoa there, that made me angry!! So i came onto that thread to defend myself, as i had every right to do so, and then Sally’s other friend, Friend E also came onto defend Friend T and add her two cents, then go onto attack my friend, who i will call Amelia, who had also come onto defend me. A night of me being on the phone with Sally, and then lots of back and forth messages, as i unblocked Sally’s friend E to come to the defense of my friend Amelia, ensued, culminating in Sally getting angry and blowing up at me, because she felt i was going to ask her to unfriend her friends T and E. Between me and Amelia, we were both able to convince Sally to please not be angry at me, that it was NOT my intention to friend police her. And it wasn’t!! Sally told Amelia she didn’t hate me, and that we were still okay, but that she just needed some space to process what had happened, and that she and i would be fine again. And we were. Sally and i talked things out, and we were back on track as the good friends we were. However, i then began to notice her posting alot on her page, posts and memes that were about friends who are too whiny, clingy, needy, negative etc., and who are so “loyal they stick like glue and you can’t get them unstuck to you.” She was also talking to me less and less. So, i decided to give her space. Hoping things would go back to our normal again.

During that whole time, i was beginning to do alot better emotionally, as i now finally had a wonderful new caregiver, so i wasn’t writing as many Facebook notes and blogs as i had in the past, when things were going badly for me. And when i did write the Facebook notes, i still would tag Sally in them!! But Sally alleges that i stopped tagging her in the notes, so i wanted to clarify that no i did not stop tagging her, i was just not writing as many of them. I also wasn’t talking as much in our group chat either, for the same reason: because i was doing better both mentally and physically!!

Even though she has now stated to me that it was not the case, that the memes she was posting that were very hostile and mean on her wall were meant towards someone else, i didn’t know that at that time, and i really felt they were directed at me. With that weighing on my mind, when i came onto my Facebook to see the notification that i was tagged in a comment, and saw that it was for that particular article above, i got angry. I wanted to talk this out with Sally, because what she did was a real trigger for me. She knows i don’t take criticism well at all, knows full that something like this would upset me….yet when i made every attempt to get her to acknowledge me, she ignored my chat messages, and then when i got her on the phone, i got caught totally off guard by her unfriendliness, and so, no, i wasn’t calm. Yes, my voice was raised, but i can swear to all who are reading this: i wasn’t yelling at Sally. She says i was, and she hung the phone right up on me, and then went straight to her wall and posted “I’ve lost my words. Do not call me again tonight, anyone!!” [Paraphrased] My anger went into overdrive, and i went to her Timeline and hit the Unfriend button. Next thing i knew, she had me blocked. (She says that i had blocked her, but no, she had me blocked first. So when i saw she had me blocked, i went to my block list and typed her name, and was still able to counter-block her, even after she had me blocked!!) The door was shut…slammed shut, with no explanation. I admit, i lose my words alot, especialy when others shut down on me or put their walls up, i put mine up too. I know this could have been dealt with alot better on both of our parts. I overreacted…..but so did she. Both of us had meltdowns. But the end result was that now my attempts to try to mend this latest falling-out, were met by Sally telling my friends Amelia and Raye, also not her real name, that she was done with me, that she could not deal with me anymore, and that i could just go pound sand. This was a new Sally that scared me shitless. I did not like this new cold, insensitive, callous Sally. I went into mourning. I could not believe that Sally, of all people, would ever turn against me….all over a Facebook post. I was willing to talk, and just ask her to untag me, and talk about why she felt i needed to read that article. I wanted to know just what she was trying to say to me. I wanted to know if hers and my friendship was over.

Since then, things have been said on both of our parts, out of our still unresolved anger and hurt towards each other. This is why i beg everybody that i know to please let’s have open lines of communication. That if a misunderstanding arises, please, can we talk it out? So things like this won’t happen. Sally herself promised me numerous times during our friendship that she would take space for herself at times, yes, but that she would never ever give up and shut the door on me. That she would see my case through to the end. And dear God, i so felt she would be the first who would be happy for me that i was now happier on Facebook!! Yet i saw few likes from her on my now postive posts. She began to ignore me more and more, and then i started seeing the hurtful memes. Memes that i didn’t know at that time, were meant for someone else.

Here’s some backstory: Sally and i were friends for the past four-plus years. Sally and i met here on Facebook, through some of the Autistic groups she and i were in. As an adult Autistic who has suffered a lifetime of being misunderstood, left out, outright rejected and bullied by my own family, rejected and bullied all through school, then bullied even more when i had to, out of economic neccessity, move to a neighborhood with mean neighbors on all sides of me, and then had to face the loss of yet more friends, then the eleven caregivers who were also God-awful abusive and cruel….even so, a person who has fought like holy hell all of my 54 years on this earth just to feel safe and be accepted somewhere, somewhere…..this latest loss has been more than just another bitter pill for this soul to have to swallow. This has been a blow so shocking to my system, that i have entered into a new realm of self-doubt and depression, and now i am even more afraid than ever before to trust anyone, to let anyone get as close to me as Sally and all of others i have trusted, only to have them too, all turn against me.

know that i take things very personally, that i am ultra sensitive, easily hurt, and very quick to put up walls, and run and hide when i feel i am being threatened physically or mentally. And, it is hard for me to even distinguish between the two when i feel threatened. I am a people person, but i am still, even as an adult, woefully horrible at keeping friends. I still do not know how to be a reciprocal friend. I do not know how to give and take, or compromise. I try my best to do all of those things, because i am compassionate, i do care, but i fail and fall alot still, because i guess i have been hurt so much, that all i know how to do now is put up the only defenses i learned, as a child….to run, figuratively, crying and screaming away, to hide back in my own world, my own safe cocoon. Where i would truthfully stay, if i knew i could survive inside of there, because frankly, i am feeling more and more like going to that cocoon and never coming out ever again. It’s PTSD. Abandonment issues. I have both. Deep-seated. Still unresolved. I am an Autistic adult who has fallen through the cracks. I am needy. Very needy. I need for the world to understand how this is. I can’t snap out of this. I can only do what my mind and body will allow me to do each day, each moment. If people get angry with me, i take it hard. because i am so afraid of being walked off on again.

Earlier this year, when i was still in the throes of having to suffer through even more daily abuse from the caregiver i had at the time, i was friends with a lady who lives in an Upper Midwestern state. This lady, who i will call Lady X, along with Sally, convinced me to talk my mother into placing the units where i live on the market to be sold, and with the money, i was going to move to Lady X’s state, to escape all of the hell i was going through. But that was not to be either, as things exploded one night between me, Lady X and Sally, on our chat thread. That was a huge blow, as Laxy X retaliated by calling the police to come do a false welfare check on me, then she called Adult Protective Services and IHSS on me too, to try to have me hauled off to either a nursing home or mental institution. Sally said “Not to worry; i am here for you now. You don’t need Lady X now.” I believed her. I have believed everyone who has come into my life. I truly think that my new caregiver will stick by me though…..but my trust in the human race as a whole at the present, is at an all-time low now. Everytime i get upset now, it really affects my legs and feet now.

As God is my witness, this is what happened. And i do not write these blogs because this is a pity-party. I am genuinely lonely, i am genuinely in need of friends who truly will get me, my Autism, and who will accept me and my Autism, who will be here for me. I write these because of this, and because i want to get my story out there…..because i want to educate others. Thank you.

By the way, i want to go on record as saying that i never ever said that Sally’s art is fake. I myself draw using pictures to go on; many artists do that, and then we add our own personal touches to our piece that we are working on that makes it ours. What i had said was that another friend had told me her art was fake. But that is not why i don’t trust Sally now; i don’t trust Sally now because of the way she is choosing to treat me now by shutting me out, and discounting all of my feelings, and playing head games when i try to talk to her to reason with her, and to try to make peace with her, like i tried to last week.

Why Doesn’t America Care For Us?

The following is not a negative rant just to be negative, this is a serious rant to call for ppl to start caring about your disabled and elderly brothers and sisters, aunts, uncles, cousins, nieces, nephews, mothers fathers, daughters, sons, neighbors and friends.

Because no human is an island unto themselves. We all need each other. We all need love. We all need to feel as though we matter. We all need to feel as though we are a part of our communities. We all need to feel like we are safe and cared for.

Eeeeeeeeeeee……today was bad. Very bad for me, because i am housebound and cannot go to the store to get new batteries for my remote when my remote dies. I can’t go and get ice cream or other things i am craving. Because i have no way to get there, even to walk, because i am unable to walk more than 20 steps without my whole body hurting excruciatingly.

If this is what it’s like to get old, i don’t want it.

Yes, the first thing that happened today, was that my remote for my TV sound did die, then i discovered that i have NO AAA batteries to speak of in my entire house, so i couldn’t replace those batteries, then when i went to use the toilet, my toilet handle chain decided to come off, and i had to bend over into the toilet tank and fix that, or go without a flushing toilet for the whole evening and night…… So, i went to watch a movie, turned up the sound to where i felt i could have a happy medium between voices and music and scene noises, and, as expected, i could not hear much of the dialogue as is sadly the usual for most movies made after 1986, but the street noises and music in the movie came on real thunderously loud, and i had no more control from my chair anymore….then my satellite receiver decided it was not going to connect to my wi-fi, so i had to just stop my movie, and come back to the computer, because even to watch YouTube or listen to Pandora on my TV from my chair without the remote for my stereo, is also impossible as the sound needs to be adjusted accordingly for those things also. I did fix my wi-fi, but again, with no remote for my sound, why sit in my chair now, unless it’s to just sleep or read? Or twiddle my thumbs?

Oh, but my dinner was fabulously delicious. Even though i had no one to talk to as i ate in my lonely little kitchen. I was able to stand long enough to heat my dinner in my microwave and put the Ranch dressing in a paper bowl so i could dip my ham and veggies in it. And the peanut butter M&M’s and ice cream bars that i had for my dessert were delicious too. But i cannot enjoy my TV at all tonight, unless it is a regular show like the news or HGTV or the Food Network. On those channels the sound is even, and i can hear everything. I am really hoping that my caregiver will be able to shop for me tomorrow, so that i will have the new AAA batteries i need to make my stereo remote work again, so i can watch TV again from my chair without having to get up and down repeatedly to go over to my stereo to turn the volume up and down. It wouldn’t bother me to do this if my body did not hurt from my hips and back to my knees and left leg and foot, because i did have to get up to change the channels and turn the TV up and down when i was growing up…but now i am not in good health, and i hurt, and hurt greatly when i walk and stand too much. 

And this was a Sunday. A Sunday that i could have enjoyed.

I really am hoping that this week will be good to me, and that i can even get out to go to a park this week where i can see some trees, flowers, water and green grass!!! 

Going to watch the news now that i have DVR’ed. Because like i said before, fortunately, the audio stays consistent on that, and on my soap opera that i like to watch, and on HGTV and Food Channel too, so i don’t have to worry about that. Movies are going to continue to be a huge no-go tonight, though, till i have the new batteries for my stereo’s remote again.

When i win the big lottery jackpot, i am going to lobby to start getting huge complexes of 1, 2, 3, and even 4 bedroom single-story set-alone cottages that will be set up in a community that is totally sensory-friendly and that will be a totally Autistic-friendly safe space that will have easy access to transportation, Autism workers for each person, and total wraparound services for us all—so that we who don’t have family support and local support, won’t have to be isolated like this anymore.. I would love to be able to build several in California, and then some in New York, Chicago, Boston, Atlanta, Milwaukee, Denver, Dallas, Seattle, Portland OR, Boise, Pocatello, and so on. I just don’t see why American people are so indifferent and uncaring towards those who are marginalized, homebound, disabled, etc. Dear God it just does not have to BE this way!!!! People should not be frightened to grow old, or to be disabled. We all need to love and accept each other as we are, and care for and about each other. Our families need to care. The word “giving up” should no longer even BE a part of our vocabulary, especially when it comes to disabled and elderly people!! Even this country’s CHURCHES don’t give a shit about us!!! That’s a real TRAVESTY!!!

My Statement And Update

My statement and update:

The reason i am not blogging and posting as much as i used to, is that i no longer have the awful bad caregiver issues. My current caregiver is a sweet angel who takes excellent care of me, and she and i are going on four months now with no problems. My legs are getting slowly better too, as i am now taking Lasix. My hope is that i will get the money to move, and also to be able to go have the leg surgery too, when i lose enough weight. The other reason is that my street problems with the bullies does not happen as much either. It did Friday when the owner of the auto shop wasn’t there. And then that night, the appliance shop owner, for some odd reason, also decided to flare up too. But things ARE starting to be taken care of in my life. When i do post, i will still tag my closest friends though. I am not ignoring anyone, any of you, or ignoring my chats and groups either. I simply have not had as many huge problems lately.

The blogs i took off of my Facebook can be found on my WordPress account, here.

As for my GoFundMe page being for me to get money to take vacations? No. It is foe me to try to get money so i can make a move away from this street. Because it is still very noisy. The reason i mention my dreams and goals, is because those are my dreams and goals, and my dreams and goals are a huge part of me.

As for me friend policing anyone? That has not happened either. I do get scared of certain people, so i voice that concern. But i would never ever tell any of my friends they can’t be friends with someone just because i don’t like that person. I instead use the block feature so i won’t have to interact with the person who bothers me. Friend policing is a form of muzzling and oppression, and i always try my best to be fair with everyone. If i have made anyone feel as though they are being policed and oppressed, i apologize. I will try harder not to fall into those behaviors. Please remember, i am Autistic, and i am still learning and growing. I am merely here to tell my story, to have friends, and a solid support system of people who will never turn against me and turn their backs on me. And i am also here to educate, so this can become an Autistic-friendly world for us all.

Thank you.