Friday, July 17, 2015
I am sure that both C and Angel will not mind me writing this blog post. :)
On June 16th, my whole world crumbled down around me when my caregiver of 15 months, C, who was—-and is—-like a sister to me, walked out on me. One month has gone by now, with me going through two caregivers: the first caregiver, M, turning out to be another awful nightmare like the ones i had before C were. But the second caregiver i got to replace M, a beautiful sweet young lady named Angel, who came in to replace M—-was, and is, a true Angel in every sense of the word. I grew to love Angel right off the bat because of how she really got me, how she right off the bat, got how i liked things, and she also gave me a really awesome shower while she was my caregiver. She has a brother who is also autistic, so she does understand a great deal about Autism, and had already read my blogs and watched my videos before becoming my caregiver.
Angel and i continue to be friends now…..because she and i have really bonded. But sadly, though, Angel ended up having to bow out as my main caregiver after a week and three days of working for me, because of needing to have a full time job for now. Angel is not yet in the system at IHSS, and still has to go through orientation so she can start being paid., which was why she needed the other job now, for financial reasons. So she and i spent all of Tuesday afternoon looking for new caregivers to replace her, and she promised me she would make sure she would find one who will be a good fit for me.
Again, Angel is very much still in my life as my friend and as my back up caregiver.
After setting up appointments to interview two of the people who had answered my last ad that i had posted when C walked out—–two people who still expressed interested in working for me—–i decided i didn’t have the spoons to hire more strangers—-so we began to talk about C, and the possibility of giving C a second chance. We talked about this at length, and i decided in the end, that yes, i did want to have C back in my life, because, even though it didn’t work out the first time, i still have strong feelings of love for her, and i still care for her. I wanted her to come back because of all of the good she did do for me, because of how she helped me with all of my meds, how she did do alot of things for me, and because we did have so many good times and good laughs.
So, i had Angel message her. C messaged her right back, saying she was very happy to come talk to me, that she is not at all angry at me, does not hold grudges, and that she has missed me—-and has worried about me all this time.
C came over that evening, and Angel, C. and i, talked everything out. C and i both admitted that we were both at fault in how things ended up going downhill. It was a lack of communication that we both allowed to snowball. We were both afraid of each other. We both didn’t understand each other. We were both trying to read each other, and were both failing to do so.
C told me that the real reason that she walked out on June 16th, was not because of my social worker calling, it was because when he called, and i ended the call, she could see how frightened i was to talk to him on the phone in front of her, and to talk to her about it afterwards. She said that i was sitting in my chair, trembling from head to toe, and that my hands were all balled up in front of me. She could not stand to see me like that, that afraid of her……so that was why she left. She had always told me that if i ever ended up getting that afraid of her, that that would cause her to walk out. Because the last thing she ever wanted was to hurt me and to make me afraid in my own home. And she does NOT want me to EVER be afraid of her anymore. So i decided to have C back in my life to start a new season with me. She started working for me again yesterday, on July 16th, exactly one month after she quit. She has promised me that the old moody C is gone, and that we are going to do things on my plain now. I believe her, and i believe in her good heart. I feel confident that this time, we can make things work.
C and i had lots and lots of good times during our fifteen months together. But yes, things did happen, Yes, we had a real communication problem. Yes, i did grow to be frightened of her. Yes, the walls between us grew too tall, and in the end, neither of us were able to go on this way.
Yesterday, C and i had an awesome day back together. I had her give me a nice long shower, and we took our time. She and i then went out together to get my dinner and drinks for the night too. Our schedule now will be from 3 PM to 9 PM, or from 2 PM to 8 PM like i want…as i actually have more hours now that the State of CA has restored to all IHSS consumers, the 7% reduction in hours they took from us three years ago to balance the state budget.
With Angel now in my life, and C now agreeing to have Angel, my mom, and my friend Emily too, all mediate if there **are** problems….yes, i do feel confident that this time, things will work out. If by chance, they don’t….then Angel and C will both help me to find a replacement caregiver who will be a good fit for me. And they will help train that person.
I do think that C and i needed a vacation from each other. Sometimes we do need to have that space.
In closing, C is going to get me out of my house alot more often. We will start going to the movies, and up to the coast, and other places. I believe her when she tells me she wants to make this work this time. I believe in her good heart, and in her again.
Before i close, i also want to say that on Wednesday, i finally got to go to the coast. Angel and her boyfriend took me, and we spent a couple of hours, as my legs would allow, at the Port San Luis (Harford) Pier up in Avila Beach. I took lots of pictures, which i posted to my Facebook. It felt good to get to see the ocean after not seeing it since November of 2013. :)
I also need to retract what i wrote in a blog post on June 27 about C bringing all of those motorcycles on my street to terrorize me. She did not order those bikers to come do what they did. Those bikers were not even her friends like i had thought they were. C is fully aware of the sensory issues i have with those types of noises, and even if she was boiling pissed at me…LOL….she would never, in a million years, come and do burnouts in front of my house, or get any biker friends to come terrorize me, because she knows what that would do to me, and she is not the type of person to be vindictive and malicious. She has apologized for things that did happen, and has vowed that this time, she will do all to help me remain happy, safe, and free. I believe her. I believe in her. I believe in forgiveness, and i believe in second chances. :)
Thursday, July 9, 2015
In this blog, i want to explain what i go through with my meltdowns. My meltdowns are mainly caused by bad people experiences and interactions, and sudden loud harsh noises. They can also be caused by me making a mistake. Or by accidently bumping my nose or parts of my face. Or by bumping into a wall. Or the wind blowing through open car windows and blowing my hair all over the place. Any sudden change or environmental thing can set me off into a meltdown.
When i have a meltdown, i will often rock and hit myself and shake my head back and forth. I will, at the same time, moan, groan, wail, and start saying different words and phrases over and over. Some of the words and phrases i make up have a definite meaning to me as to how i am feeling at the time of my meltdown, but to others, these words and phrases sound random and don't make any sense. Here's an example: when i had C as my caregiver, whenever she would get harsh with me, i would start to meltdown, as described above. She would often react by abruptly leaving the room, and leaving me to meltdown, leaving me thinking she was angry at me. Usually, though, she would come back after abut 10 or 15 minutes, and we would talk it out. But in the last month before she quit, she began to get in more and more harsh moods with me, so i began to refer to her as a rough washcloth over and over and over, whenever she would say things that would upset me. The reason for the phrase "rough washcloth"? Was because my grandmother used to have washcloths that were always so hard, stiff and rough, and she would would run a hot wet one all over my face when i was little when she would wash my face----and oh, i hated that!!. C's harshness reminded me exactly of my grandmother's rough washcloths, so i would tell her "You're being rough washcloth....being rough washcloth....being rough washcloth" and i would say it over and over again while rocking back and forth, and hitting my arms, because she, C, wouldn't listen to me....to get her to stop being harsh with me.
Some of my meltdowns are quiet, but some are very loud. When a loud car or motorcycle roars and screams through past my house, and they don't stop gunning their motors....i will yell, scream and curse, till my voice gives out, while hitting myself. When they do loud burnouts across the street at the auto shop, it really sets me off!!
During another meltdown, i ripped all of the nice nice scenic pictures i had on my walls here in my living room all down because my ex-friend G who used to live next door to me, upset me really bad one time. I threw them, and a bunch of books i had, out on my front lawn, as i cried. G used to upset me alot when he lived next door, and it would always take having my mom call him to get him to rectify things between us again.
When one of my past caregivers upset me really badly in November of 2012, i went on a meltdown that lasted the whole night...it began by me getting the duct tape and putting two pieces of it on my mouth and i posted several pictures of me with the duct tape on my mouth, with a poem "For Those Who Don't Understand", on FB, then i did a long video about what happened, and then i picked up my scissors and went into my bathroom, with hot tears of hurt streaming down my face, and i punished myself by chopping off all of my beloved red hair....because of how mean that caregiver got with me. I posted another video of me with my newly chopped off hair, explaining what i had done and why. Then i grabbed the nice red shirt i was wearing, and ripped it to shreds with my bare hands. That was how distressed i was that night. So, yes, people things especially, can hurt and trigger me very badly, when ppl are just downright mean, it hurts way deep inside of me, and it is like the whole world has caved in on me. And i have had so many people in my life turn against me and turn mean towards me.....that i now have nightmares almost every night and day when i sleep.....and i now have deep trust and abandonment issues.
During a meltdown, i will often lose my ability to talk in full sentences, and sometimes i will babble and not make sense. My words that do come out, will come out fragmented. It is important that people around me do not yell, lecture, or scold me during a meltdown as that will only make it escalate. It is better to remain calm, and ask me "Is there something i can do to help you?" Or, "Did i do something to upset you?" If i say yes, allow me the time it takes to calm down to tell you, and then let's talk things out, and if possible, do what you can to either remedy the situation that caused the meltdown, or suggest alternative solutions to me.
I am Autistic, for those of you who are reading this who don't know, and i only have so much self control when i am having a meltdown. The way our meltdowns manifest, can't be helped. However, i am not violent in the sense that i will ever hurt others during a meltdown!! I do happen to do alot of yelling, screaming, moaning, groaning, and cursing and i am more likely to self-punish during a meltdown. I am able to hold my meltdowns in for a while, depending on the situation, but then it does come out sooner or later. I will sometimes hit my face too, but i mostly hit my chest over my heart, and i will also bite, scratch, and hit my arms.
Sensory overload is very hard for those of us who are Autistic, to control. It isn't like we are doing this on purpose or choosing to do this. This is what a meltdown can look like. I am hoping one day to be able to record my meltdowns so ppl can know what goes on with me when i am having one.
Also, a meltdown happens usually due to sensory overload, or if we are triggered, or someone upsets us. What i am describing above, is a meltdown, not a temper tantrum. It's important to know the difference between meltdowns vs. tantrums.
I am here to tell my story and by telling my story, i strive to educate ppl what it's like, in my own voice, so they understand that we #Autistics are real human beings with feelings, that we matter, that we have a voice, and that we are wired differently. Because of this, we process everything much differently than neurotypical ppl do. We are more hyper-sensitive to the environment and world around us.
We are not the tragedies and burdens and monsters that organizations like Autism Speaks portray us to be. We are not wrong. We are not damaged or broken. We endeavor to show the world that all we want is to be accepted, loved, and included, to be a part of our communities, and to not be fixed, cured, and eradicated.
Many of my meltdowns happen when ppl misunderstand, don't listen, and talk over me when i want to talk and explain things, and then they go onto judge, assume and condemn me. Then turn their backs on me. Or they knowingly and purposely do things that they know are triggers to me, and they mock, and make fun of me. if ppl get angry at me and walk out on me, that is a huge trigger for me. Because i am deathly afraid of being left alone, stranded, to fend for myself.
I hope that this blog will be read and shared far and wide. Because this is important. Please listen, learn how our minds work, and learn our language too. Let us talk and tell our stories. Let us be ourselves. Let us stim. Learn how we like and don't like for things to be, and accomodate us. Accept us. Include us. Because. We matter!!