Monthly Archives: July 2015

Connie~~To New Beginnings

The following post is derived from a Facebook post i posted to my wall earlier on Friday evening. As always, when writing my posts into a blog, i like to add to them, for more clarity. That’s just a thing with me. Because…understanding is knowledge, and knowledge is power.

For those who don’t yet know, i have decided to have Connie come back as my caregiver again, because Angel was sadly unable to continue to work for me. Angel’s reason was not because anything went wrong this time, as i stated in my last blog. It is because of financial reasons that she has had to bow out for the time being. But sweet Angel and i are still very good friends. She is one special young adult woman, due to her wisdom, kindness, and compassion, and in the two weeks we got to know each other through Facebook, and then the 9 days she worked for me as my caregiver, she and i really bonded. As stated in my last blog, when she and i were friends, she read my blogs, and watched my YouTube videos, to gain a better insight into how life is for many Autistic adults. Because she has a brother who is Autistic. I still look forward to getting to meet him, by the way.

I bonded right away with Connie as well. Because, at her core, Connie is also a wonderful sweet soul. She has a hard exterior, yes, but life has sadly made her that way. But this go-round, i have talked much more in depth with her, and have gotten to know and understand a great deal more of why she has developed that hard exterior….and i am not afraid of her anymore. I have no reason to be afraid of Connie anymore. My post below explains things in more detail.


From my Facebook post, again, edited for more clarity:

“I had another AWESOME day with Connie!!!! 🙂 She has really opened up to me alot in the past two days and told me things she has never told me before about herself and her life story. (Btw, i have her full permission to post this, and will probably put this into a blog too.) First of all, i want all of you to know, she is SINCERELY sorry for how things went the first time she worked for me, she realizes things did happen last time because of some very heavy things that happened to her a year before she began working for me. But i believe her when she tells me she feels awful about how it went last time with us, that she really cares deeply about me, and that this time, she is going to listen to me when i tell her things, when i tell her i am reaching my limits, and when she is going too fast for me. She means it when she says we are going to go at my pace now. She is also open to signing the caregiver contract i wrote up for all of my future caregivers. If there are problems, she is also open to talking to my mom, and my friends Emily and Angel, to gain better understanding, and to help mediate in case i shut down and lose my words.

Connie is basically a person who cannot just come into someone’s home and care for them and remain “professional” about it. She, like me, bonds with her clients, and makes friends with them. She knows that she and i failed each other the first time around.

Just to give you a little bit of history about her, she and her family came over to the US from Southern Europe when she was 6 years old, and she has endured alot of extremely rough and traumatic spells in life. To cope, she built up walls around her. Even so, she has learned alot along the way, and is still learning alot. She may still have some anger left to deal with, but i promise you all, when you get to know her, you will find out that this lady’s heart IS made of pure gold.

She did not walk out on me to be mean and malicious to me…she walked out because she saw how frightened and petrified i had become of her that day after the social worker called me. I admit, that i did not understand her anger then, and understand and trust that she would never ever be intentionally mean to me….she **was** going through alot still while she was working for me our first time together, but because she still has a heart to want to help people, was still trying her best, to the best of her ability, to be a good caregiver. She truthfully did not understand my Autism either, as well as she does now. During the time she was gone as my caregiver, she did alot of soul-searching, and she actually spent time watching a bunch of my YouTube videos. That, along with some of her close friends also talking to her, who also seemed to understand me even though they have never met me, has changed her mindset a great deal now about me, and for the better. My YouTube videos were a real eye-opener into my soul for her.

I also want to clarify a few more things i posted that were incorrect, and that originally got written the way they did, out of my hurt and anger… is about the rescheduling of three of the doctor appointments that i did in February, March, and May. I had to reschedule the February one because it was raining that day, and Connie fears driving that far in the rain, due to a car accident she was in while it was raining. I rescheduled the one in March, because i had just sprained my leg lump three weeks before, and had just gone to the bank the day before that appointment, and could not handle going in the car again the next day. In addition, these appointments were also always getting scheduled for either the day before, or the day right after my Social security payday—and i generally dislike having to make the effort to get in and out and in and out of a car two days in a row.

Other things didn’t get done because i was depressed alot…and i had been housebound for so many weeks at a time, that i was becoming fearful of going places. Yes, Connie did not feel well alot of the time, which also made it difficult for me….because….as time went on, my fear of her was growing. By May, we had both built up walls that just kept building. Things were breaking down between us both, to the point where all i saw was darkness and hopelessness. I was frustrated because i felt Connie was burning out. I was frightened that any day she would explode at me and then walk out on me. I felt like i was trapped. Which was why i had two of my advocate friends finally call her. Sadly, this made things worse, because, now Connie all of a sudden felt she had to be professional when she still wanted to care. How this happened, was due to mutual fear on both Connie’s and my parts. Fear of us both hurting each other. We both have had an extremely rough going in life, and we have both each developed our own coping mechanisms and walls to survive each of our own lives.

Connie did try with me. She did get me the wheelchair. She worked hard to get my medications straightened out so i would never be without my meds, nor would i ever have to pay for my meds, other than the $1 or $2 dollar co-pay on them. She got me the disabled parking plaque for me. She did intend to get me out and about in that wheelchair. She intended to give me a good Thanksgiving. And a good Christmas. At Christmas, she and my other friends, Sue and H.F., all went in on a nice care package for me of all of my favorite candies. Yes, there were things that didn’t get done. But that was because we were not communicating well, and we each let our fears grow into us making monsters that should not have been there.

But now she does understand a great deal more because she has seen my videos. She has done much soul-searching. And her friends, who understand, have talked to her.

I am optimistic now. I do sincerely feel things are going to work out this time…..because Connie does NOT believe in throwing people away just because they are a challenge. Again, her walking out on me was done because she felt her being here for me when she could see that i had become that petrified of her that day, was too much for her to take, emotionally…it broke her heart to see me shaking the way i was doing, with my hands clenched in front of me after my county social worker called. And after she walked out, she did think about me every day after she walked out, and she did think about calling and messaging me on numerous occasions…and she did call my next door neighbor several times also, to see if i was okay. She told me that, even though she had walked out on me, she was even going to still get my prescription, and that she was still going to get my dinner for me that night too. Fear that i would freak out to see her come back, made her not do those things. But….one month later, i had Angel message her, and she told Angel she wanted to come over and talk to me…..that she still cares about me….and has never stopped caring about me.

I do think it is going to be okay now. 🙂

Update, Clarifications, & A Second Chance

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. 🙂

Why don’t you get treatment for that?

I posted an earlier article about this on my FB timeline. I am fearful of having to go to medical appointments, the ER, and the hospital, because i am Autistic, because of my lymphedema, and because i happen to be a large plus-size person. I have been scolded and fat-shamed, and treated as less-than. I don’t like the examination boxes they STILL have in so many doctor’s offices that are so narrow, and impossible for me to get up on. I don’t like the rude office workers in the front waiting room. I hate the clinic i have to go to. My own doctor has scolded me harshly in the past. And i have never been known to be able to take harsh blunt scoldings and harsh blunt criticisms!!

Silence Breaking Sound

Content note: Healthcare discrimination; involuntary treatment; general medical stuff.

The idea that someone is weak, irresponsible, or at fault for their own medical or other problems because they decide not to get medical treatment is a great big bucket of nope.  Here’s a number of valid reasons for why people might not seek treatment, and why not to shame people over it:

Lack of money.  Because at least in the U.S., medical treatment is still not free for the most part.  It’s not even necessarily affordable for a lot of reasons, including the cost of insurance premiums, high deductibles that often come with more affordable health care plans, lack of coverage for certain forms of treatment, and specialists who refuse to take (a particular type of) insurance.

Circumstances that make taking the time or effort to get medical treatment unfeasible, which often comes down to a lack of money.  This includes having a…

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H: ‘Not an Impostor’

Listen to us, Autism Speaks, listen to Leah’s son, H!! We are NOT the tragedies and burdens you keep on portraying us as!!!

Thirty Days of Autism

H and I recently co presented as a part of the training for the summer staff of our local Community Living/Inclusion organization.  This was a really fabulous experience for a number of reasons.

The openness of the staff to considering the ideas and perspectives being expressed was obvious, and very much appreciated.

For me it is particularly important to be able to feature Harrison’s experience and perspective, not only because of my commitment to the idea of ‘nothing about us without us’ (and the specific commitment to this I have made regarding my presentations), and the impact this lived experience in expanding the understanding for others, but also because it empowers my son.

Presenting is such a powerful way for this young man to feel he has some agency and can take an active role in combating negative stigma. The role this has in supporting his healthy sense of self…

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