Archive for the 'Advocacy Stuff' Category

18
Jul
14

Ableist versus Assumption of Competence

Ableist versus Assumption of Competence.

I am going to share, what I think, are two competing ideas that have me so confuzzled. I am hoping my friends in the autism community can help explain things to me, please.

First, the definition of Competence:

This is from one blog post about it: “If you assume competence, you are giving a person the opportunity to succeed.  Does it mean that he or she will always achieve the desired success?  Not necessarily.  But isn’t it more damaging to not provide him or her with the opportunity at all? “

This is another definition: “The principle of “presuming competence,” is simply to act as Anne Sullivan did.  Assume that a child has intellectual ability, provide opportunities to be exposed to learning, assume the child wants to learn and assert him or herself in the world. To not presume competence is to assume that some individuals cannot learn, develop, or participate in the world.  Presuming competence is nothing less than a Hippocratic oath for educators. It is a framework that says, approach each child as wanting to be fully included, wanting acceptance and appreciation, wanting to learn, wanting to be heard, wanting to contribute.  By presuming competence, educators place the burden on themselves to come up with ever more creative, innovative ways for individuals to learn.  The question is no longer who can be included or who can learn, but how can we achieve inclusive education.  We begin by presuming competence.” from this about Helen Keller’s teacher, Anne Sullivan.

And now.. ableism.

From dictionary.com: “discrimination in favor of able-bodied people.”

And another: “Ableism is a form of discrimination or prejudice against individuals with physical, mental, or developmental disabilities that is characterized by the belief that these individuals need to be fixed or cannot function as full members of society (Castañeda & Peters, 2000). As a result of these assumptions, individuals with disabilities are commonly viewed as being abnormal rather than as members of a distinct minority community (Olkin & Pledger, 2003; Reid & Knight, 2006). Because disability status has been viewed as a defect rather than a dimension of difference, disability has not been widely recognized as a multicultural concern by the general public as well as by counselor educators and practitioners.” quoted from here: Laura Smith, Pamela F. Foley, and Michael P. Chaney, “Addressing Classism, Ableism, and Heterosexism in Counselor Education”, Journal of Counseling & Development, Summer 2008, Volume 86, pp 303-309.

Okay, so ‘splain to me how my sharing an article (link to article) to someone who wanted to know WHY people were refusing to be her friend, WHY people would “throw her away”, etc. is ableist? I wrote a comment on the article posted on my timeline that stated:

(Names removed): 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.”

Benefit from reading = understanding the WHY.

How am I being ableist by sharing this article with friends who have specifically mentioned this being a problem and wanting to change it?

You see.. here’s my dilemma. If you presume someone CAN control their behavior (or learn how to), you are using the presumption of competence. However, if you do presume competence, you’re an ableist. Why? I don’t get it. Please, someone help me.

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03
Apr
14

Advocates Behaving Badly Part One

I sit here a bit dazed and confused, as the saying goes. It’s hard to know where to go next or what to do next after the events that transpired in the wee morning hours of April 1st, 2014. The irony of what occurred when it occurred only struck me just now. You see, there is a person in the community who has caused certain events for an autistic person that were traumatic for that autistic person, on the first day of “Autism Awareness” month. As I am writing this, I am attempting to gather my thoughts. I want to make sure this is all expressed clearly and as succinctly as possible. But I warn you now.. it will be a long post. But well worth the read, I hope.

In September of 2012, a FB friend of mine by the name of Melissa Fields was contacted by a mutual friend. This mutual friend suggested that a friend of hers could help Melissa. This friend was a “Autism Advocate” of 20 years and wanted to help  Melissa Fields. So, Melissa Fields began correspondence with this “Advocate” Debra Brink via Facebook messaging, and the like. Melissa Fields has had a troubled time of life. It wasn’t until September of 203 that Melissa added Debra Brink into our private support chat on Facebook.

You can visit her blog to read about it as she does share her story.

Melissa Fields wants her story told for many reasons. One of the reasons Melissa posts so much is because she uses them to process events. Things happen and Melissa doesn’t know how to make sense of them. So, she writes about them and as she does, she starts to see things more clearly. Sometimes she might think things are one way but after writing it out, she sees it differently. She also writes because once she processes the events, she can then process her
emotions about those events. If she doesn’t process the events, she gets “emotionally stuck” and focused on that one event. She cannot “just move on” as so many people have tried to tell her to do. If she could? She would! It’s far easier to just say “never mind” and move on for some of us. For her? She literally cannot do it. She doesn’t like to be depressed or sad over these events and so she wants to move past them. That requires her to blog about it all and get feedback from her fans and friends. By describing what occurs, people can tell her if she has it right or if she has it wrong. She does not lie about the events. She tells them exactly as she EXPERIENCES them. This is how she is perceiving her world around her, through the prism of autism. No one should be able to tell her how to feel about her life or that she should not express how she feels. However, someone is trying.

Another reason Mel shares her story is because she wants it to “go viral”. She wants as many people to see it as she can. The reason for that is two-fold. First, she wants to share her experiences so that others can learn from them. Others can learn what it is like, for her, to be autistic. This may shed light for others on how their loved one who experiences the world. The second is because she hopes it might bring her help. Either monetarily because some publisher sees her story and wants to make it into a book or by some good person coming and taking her away to a safe place. Where she lives now? She does not feel safe. And after what happened last night? I don’t think she’ll ever feel safe again there. Not fully. What Debra Brink did and why she did it are questions no one but Debra Brink can answer. We all have our own opinions about it. Mel tried to express hers but was shut down and told to remove them. So, she did, out of fear, remove several blog posts and FB posts. Well, I’m not afraid because I know it is *not* illegal to post true feelings based on true facts. Facts are indisputable things. They either happened or they did not happen. Everything that I say in this blog happened. And I have proof of it. I will share some of that proof with you, so that you can make up your own mind about what happened. But this is what happens to adult autistics sometimes and it needs to be shared. This needs to change so no one else will suffer what Melissa had to last night and before.

As I was saying, in September of 2013, Debra Brink was added to our conversation and  over the course of the six months, Debra Brink claimed she would do these things as Melissa’s “Advocate”. She said she would do them for free. She said she would do them because she cared. She said that her heart broke hearing Mel’s story and reading her blog posts and she wanted to help Mel get out of the town she lives in. She was promising Melissa Fields a lot of stuff. How do I know? Well, Melissa Fields invited me into a group chat with her, Debra Brink and three other ladies. So, we have Melissa Fields, Debra Brink, Heather E. Johnson, Emily Titon, Member A and Member B. I am choosing not to divulge the names of those two women. I have permission from all others involved to share their names and what transpired as far as what they did, except for Debra Brink. I have not been given permission from her to speak of these matters or to use her name. I want to make that clear.  However, I do not need permission to speak about these things as they occurred in a “public” place. Yes, they are called “private messages” on Facebook. But if you have one or more persons in the message, the assumption of privacy is no longer there. That has been ruled on. As Debra Brink herself has said, if you don’t want it on the internet, do not put it out there. So, she should already know that. And these events transpired as a part of *my* life. I can write about what happens to me.

When Debra first joined our group chat (it’s a private message on Facebook among those persons listed above), we welcomed her and all accepted friend requests that Melissa had sent to suggest we be friends with Debra. Debra made many claims. First, she claimed that she was an “AUTISM ADVOCATE FOR TWO DECADES” (she used caps lock a lot as she stated her eye sight was poor and it helped to see the screen; having poor eyesight myself I can attest that it does help if one has poor eyesight to type in all caps. She never requested that we do so so that she could see what we had to say better/easier.) She claimed “I WORK WITH LAW ENFORCEMENT ON ALL TYPES OF CASES. CASES THAT WE REFER TO AS “MESSY” !! AND I DO NOT MEAN THAT MELISSA IS MESSY ! I AM TALKING ABOUT PEDOPHILES AND SUCH !!” At the time, we took her at her word. She claimed ” I CAN HELP MELISSA SET UP A WEBSITE THAT WILL GO VIRAL !! I KNOW SEO THAT WILL MAKE HER PAGE THE TOP RETURN SITE ON ALL SEARCH ENGINES !! I AM ONLY ONE OF A FEW IN THE WHOLE WORLD WHO HAS THIS KNOWLEDGE !!” I did not believe that part. As I know quite a few who are trained in SEO language to help pages appear in the first page of results or the “top 10”. In fact, I have had such training as part of the program when I obtained my AS in Business Administration with Legal Specialization from Boston Gibbs College back in 2004. However, Mel very much wanted her website to go “viral”. Over the six months, we heard many claims from Debra, including these, over and over again. At least once a day, we’d hear how awesome she is at advocacy. At the time, I did not say anything directly to Debra Brink because I had not heard of her at all but that does not many anything. There are 7 billion people on this planet and just because I have not heard of her, does not mean she is not active in the community just in the manner she described. I let it pass in the group chat. However, when she would go on and on and on and on and apparently not reading what anyone else was typing into the chat, I would private mesasge Emily Titon about it. It bugged me. It’s a personality quirk of some that I really cannot stand. I had asked Emily, “Who is she trying to convince? us or herself?” Because that is what I thoguht at the time. I did not understand her need to “prove” herself with her words in the manner that she was. Most times folks did that, it usually has turned out in my expeirence, that they are lying about their experience. In my experience, those who name drop, brag about the cases they work on, and go into infinitesimal details are usually lying about it.  That has just been my experience. I did not think Melissa needed to deal with this personality clash and so made no mention of it to her at all, at that time. You see, Melissa Fields is not able to have reciprocal friendships. She can give support and truly cares about others and their problems but because of the situation she has been in and continues to be in, she does not have the wherewithall to deal with others’ problems and her own and so quickly becomes overwhelmed by them. So, I often refrain, as do others in our group chat, from mentioning our own problems, except to say things so that Melissa would understand why we weren’t online at any given time. We needed to reassure her that she had not made us mad, we were not abandoning her but just living life, etc. Because she has been “thrown away like trash” (her words) so much, she is afraid all will do that to her. Melissa Fields relayed a conversation she had with Debra, over the phone, to me, over the phone. Melissa has actually told me about it about four times now. It’s because it sort of traumatized her in a way. It has left its imprint on her brain and in not such a good way. Melissa said to Debra, “How do I know you won’t turn on me when I get up to Michigan to live with you?” as that was a very real fear of Melissa’s. She has experienced so much abandonment and verbal, emotional and physical abuse from her earliest childhood. That has been confirmed to me by her mother, over the phone previously.

Instead of understanding that history, combined with Mel’s autism, and her just needing reassurance, Debra broke down in sobs. Crying, hysterically, according to Melissa. Debra made her feel guilty for asking. Debra reportedly stated, “I can’t believe you would even ask! After all I’ve done for you and am willing to do for you?” It disturbed Melissa greatly. She asked me if I felt she was wrong for asking the question. And I told her no. If she needed reassurance, she should ask for it. I said, after the first time Melissa told me about this conversation, that maybe she should let Debra know that it is just for reassurance and that Melissa is not accusing her of anything but after the life she has had, Melissa just needs that reassurance. It was later talked about in the group. Member A had mentioned Melissa’s need for reassurance and said she understood it, too as her son, who has autism, is much like Melissa. Member A felt Melissa and her son had a lot in common in the way that autism manifested in each of them. Their rigidity of thought, planning, being on schedule. If you tell Melissa you will be there at 3:00 p.m., she will expect you at 3:00 p.m. exactly. If you are not there by 3:05 p.m., Melissa will panic and assume you are not coming. Is that unrealistic of her? Possibly. Maybe one day Melissa will have the skill set required that will allow her to think of other possibilities, such as “She got tied up in traffic.” Or, “Maybe she got stuck behind a long line at a store for her other client.” and so on. However, Melissa is not able to calm herself down once she reaches panic mode. She just does not “have the spoons” to do so. And, I’m sorry, I would have thought someone with “2 DECADES OF EXPERIENCE” would know that about an autistic person and be understanding.

There were many days where Debra Brink would post about her own problems into the group chat. And while Melissa did care about them, that group chat was specifically FOR Melissa. If one wanted to share a particularly tough time they were having, that was fine.. if they needed to vent a little, it was okay. But to go on and on for HOURS where Melissa could not even feel heard? Not okay. She felt “shut out” of her own group chat. Whenever Melissa would complain to me during those times, I would tell her to bear with it. It was obvious to us that Debra had an issue. Wasn’t sure WHAT it was or what had caused it. But Debra would get “stuck” on a one-way track of conversation. She only seemed to be reading her own words or worried about what she wanted to say. She’d miss others’ words, even Melissa’s. This was problematic though when Melissa was in crisis mode. Yes, Melissa was often in crisis mode these days. Melissa had had problems before with the bullies on her street being mean to her, sure. She sure had lots of problems with caretakers, too. Not showing up, leaving early, charging extra money out of Melissa’s pocket when they were already paid by the state to do the tasks Melissa asked them to do (errands). She would have struggles because if she reported them, her case worker would somehow make it Melissa’s fault. And would talk curtly to Melissa to the point that Melissa felt she couldn’t talk at all anymore to her case worker about her problems. But for some reason, since September, Melissa was in crisis mode much more often. On a daily basis SOMETHING would set Melissa off into a panic, would trigger her.. and while she was in panic mode, she really needed her “advocate” to be there for her, to help calm her down. Does an advocate normally perform that role? I don’t know. I guess it would depend on the purpose of the advocate. Melissa was under the impression from the many times Debra said “I AM HERE FOR MELISSA !! 365 DAYS A YEAR, 24/7 AND I NEVER TAKE A DAY OFF !!” that it meant for whatever Melissa needed, including reassurances, talking about her move to Michigan, planning for new service workers, or what have you. Melissa took Debra at her word.

About a month into their friendship, Melissa reported that Debra would say that to her in the private chat that they had, but then follow up with how much Debra was missing out on. So, Melissa started to feel guilty any time she called Debra. She has also reported to me that there were times when she’d be on the phone with Debra during crisis mode with Debra, wanting Debra to call the cops for her as her mean street bullies were at it again and Debra would not shut up long enough for Melissa to find out IF Debra was going to be calling the cops for her or not. Melissa reported that Debra would verbally assault her in the sense that she would just talk and talk and talk in what Melissa referred to as “a wall of babble I couldn’t break through!”. What was Debra saying? Was it important to the moment? Melissa reported to me that it was usually threats of some kind towards others. Such as, “I HAVE FRIENDS WITH LAW ENFORCEMENT AND EVEN FRIENDS WHO ARE NOT LAW ENFORCEMENT AND SO THEY CAN GO A STEP FURTHER !! THEY CAN REALLY GET IN THERE AND TAKE CARE OF THEM !! THEY DON’T WANT TO MESS WITH ME !!” and so forth. Debra would tell Melissa “We need to send this one on a lollipop ride !!” That would scare Melissa when she thought about it later but would giggle at the time because Debra would be laughing. Melissa didn’t know what she meant but she thought she’d laugh since Debra was obviously trying to be funny and cheer Melissa up. Well, for those who do not know what “Lollipop rides” are, I will tell you one meaning that I know of and one I found when researching it to see if there were ANY OTHER meanings for it. Now, I am not saying that either of these two are what Debra Brink meant, she may have had her own meaning that won’t be found anywhere online. But, there is the sexual connotation one found in Urban Dictionary  and  you may click that link if you’d like to read it. There is also the one I have heard before. It is where one uses fentanyl lollipops to “help” a person overdose and commit suicide and/or homicide. Fentanyl is a very strong pain reliever that some patients use for when they have terminal illnesses. Other than these two, I have not heard any other type of lollipop rides. Either one though would be an innappropriate thing to say to Melissa as an “advocate” of any kind.

One of the problems I mentioned before that Melissa has had is those with caregivers taking advantage of her. In September of 2013, when Debra began to first act as Melissa’s advocate, she told Melissa she was going to report all of this to the ombudsman in her county for her as this is not right. The caregiver that Melissa had had at the time was doing okay. It was in November that Melissa’s then caretaker “KT” began to slip up. She left Melissa without baths that she needed to keep her tumor from breaking out and getting infected. She started to not keep up on Melissa’s laundry and so Melissa would not have clean leggings for her lymphedema. To be fair to KT, at that same time, her mother had fallen ill. It was a serious medical condition and it is my opinion that her mother’s illness is what kept KT from being the full-on caring caretaker she used to be. For some reason, Debra asked me the ONE time she and I spoke on the phone about Melissa’s needs, if I felt KT was doing alright. This was before problems with KT became known to us as a group. I gave my opinion of it at the time with the knowledge that I’d had. I said, “Yes, she is. She may be slipping right now in some areas but Melissa has always been able to talk to KT to get things back on track. Melissa has to learn how to communicate effectively with her caretakers so that she can let them know her needs and what needs to be done and how she wants them done. Of course, Melissa is afraid if she stands up to them, they will quit and she will be totally on her own. That’s reasonable but she should be able to give voice to her concerns if she has any concerns.” Debra agreed with me and we went on to other topics, including how spiffy special her home is, and how much money her husband makes and how that she does NOT need her income or anything and that is why she VOLUNTEERS her time so much. Because remember, she does all that she does, for individuals and the “LE” (law enforcement) for free. Out of the kindness of her heart. Because she cares so much about these “messy cases”.

For some reason, about a week after I talked to Debra on the phone, I was talking to Mel on the phone. She was quite upset with her caretaker, KT. She listed all the problems she’s been having lately. I attempted to help Melissa get through that time as best as I could by helping her figure out her options. Because, while yes.. it is sad that KT’s mom is ill, Melissa still has needs to be met. It is not selfish to think of these needs. There are many employers out there who run businesses and just because your family member is ill would not tolerate you missing hours, leaving work, not showing up and when you do show up, you do not work or do the tasks assigned to you. You would be fired. However, if Melissa fired KT, she would be without care. That was not possible.

Melissa is completely home-bound and unable to transport herself anywhere she needs to go. There is a reason Mel has a caregiver in the first place and she would not be able to care for herself if KT did not help her or someone else help her. As time progressed, on Christmas Day, KT was “ignoring” Mel, not even wishing her a Merry Christmas via FB message. Melissa had had enough. She called in her prior caretaker, JuJu. To me, Melissa went from the frying pan into the fire. And she did so knowing how much JuJu took financial advantage of her last time and I feared JuJu would do it again. You see, I have been friends with Melissa for a long time and I know what happened with each caretaker, etc. in the past. But Debra seemed to be on the side of getting rid of KT as fast as possible and setting up with JuJu. Debra wrote KT’s termination letter for Melissa. It did take her some time to get it written as she said she wanted to make sure it had the right tone. She wanted to make sure it sounded “professional”. She said she knew just how to write such letters and she bragged about her letter-writing skills for most of the day. But she did write the letter and email it to both Melissa and KT, as far as I know at the time I write this.

If there are any errors, I’m sure Melissa can comment on this blog post and let y’all know what I got wrong. I will say that Debra DID take the time and ask several times if this is what Melissa wanted “BECAUSE MELISSA IS *BOSS* !!” something she’d write into group chat often. She’d also write into group chat thank yous to us there and “WE ARE TEAM MELISSA !! WE ARE A TEAM !!” so much so that I wanted to puke. Don’t get me wrong, I knew we all were team Melissa. Most of us had been team Melissa since 2009/2010 when she first joined Facebook. Why did Debra keep needing to mention that to us? I don’t get it! I think now though that it is because SHE was wanting to hear US say thank you to her. No offense but I am not going to thank her for helping Melissa (although I have thanked her because I thought that was what she was looking for and she would stop with the whole team Melissa chant whenever I did). She took on a JOB, even though unpaid, to do the very things she was doing. If anyone needed or should say thank you to her, it was Melissa. She wasn’t doing ME any favors. And Melissa *would* thank you a lot. She would also apologize to Debra, a lot. To me, if you volunteer to be someone’s sounding board, go-to person during crises, well, you shouldn’t want them to apologize for doing so. She would say it was okay and in fact she would say many times, “ITS OKAY !! I DO THIS BECAUSE I CARE !! MY HUBBY IS SO PATIENT WITH ME DOING THIS 24/7, 365 AND AFTER TWENTY YEARS IS USED TO IT !!”.

Debra would share her medical issues. She stated she had the worst gastrointestinal disease known to man. She had some sort of infection that needed “anthrax killing antibiotics” (turns out, she meant Levaquin, which is what I take whenever I need an antibiotic and while yes, it is used to kill anthrax in patients in combination with other medication, it’s really no big deal to be prescribed this medicine). She was or alluded to needing to be on a feeding tube as she could NOT keep down anything, not even water or saltines.She said this many times, including the night before the “incident”.  In the weeks prior to the “incident” between Debra, Mel and myself, Debra had been *very* ill. She claimed she was suffering from a multitude of chronic illnesses and kept saying she’d be in “Hotel Hospital” if it were not for her wonderful, incredibly gifted self. Her doctor fully trusted her to care for herself at home and so there was no need to go to the hospital when she can do all at home that they would be doing for her at the hospital. She claims she is on many medicines that keep her functioning. She also claimed that medication did not work as she had a high tolerance towards medication. Of course, I know a body can develop a high tolerance towards medicine if a body takes the medication a lot, over time and even unnecessarily. If one takes an antibiotic, for example, when it is not necessary, it dampens a person’s immune system and they will begin to need a stronger and stronger medication to work. I did notice but did not mention to Melissa that Debra had posted on her timeline that she was eating (and ENJOYING) a steak burger from Steak and Shake, a chain restaurant in her town. This particular chain is known in my foodie community as a “greasy spoon” type of fare. If one has gastrointestinal issues to the point where they cannot keep even water down, how is a steak burger going to work? I wondered if maybe she was lying about her eating at the restaurant as maybe she didn’t want folks on her friends’ list to know how sick she was. Some people, like me, often do that. Melissa later pointed that out to me on the day of the incident and thought maybe Debra was lying about being ill. I did not know which is the case. Debra also claimed to have a constant, persistent migraine 24/7, 365, “literally”. I know that when I have a migraine, especially if it lasts for more than an hour or so, I am unable to stare at a screen of any kind. I am unable to focus on a conversation and often will go lie down and rest, even if not sleep. So, we  understood that if she was having health problems, it may take some time for her to do things. But after KT was fired, Melissa needed a new caregiver. Her only choice was JuJu at this point. The only person she knew and she knew JuJu would take her for her money. And JuJu DID take Melissa again for her money and to the tune of hundreds of dollars in a short period of time. Melissa could not afford JuJu. And after some other events, JuJu ended up fired on March 1st, 2014. Melissa fired her herself.

However, because Debra appeared to be online only to send invites to baby shower, etc. to deal with her real life, that didn’t get done. Instead, Melissa found her OWN caregivers. She interviewed them and hired them. Prior to JuJu getting fired, we were looking for a new one as we knew JuJu was not the best answer. Melissa had posted into the group chat that her mother and/or sister had sent her a link to a Craig’s list ad. Debra went on and on about how BAD that was. That “.. people that post on Craig’s list OBVIOUSLY would not work !!” She put them down, put down those without a high school diploma, and insulted any and all people who work as caregivers in California (Mel’s home state) as not being good people and not being good care providers and bragged about how much better it is in Michigan because there they are required to have not just a high school diploma but also a degree and license and training. Well, we have that here, too, in Oklahoma. However, one of the best caretakers *I* have ever had never graduated from high school. She never took a training course and did not have a CNA license, either. It’s not required in the state of Oklahoma, it is just preferred by the agencies who staff these position.  This PCA lied about having a diploma and the agency never checked it out. She was my caretaker for two years before she became pregnant and I changed caretakers. I really was bothered by Debra’s snobbery. And so, instead of refraining as I usually do, I spoke up. I had spent weeks reading the snobbery from Debra and just couldn’t take it anymore; especially because she got snippy with Emily at one point earlier that week.

We were all trying to explain to Member A why Melissa Fields was having an issue with her hours from IHSS and why she had to pay for hours out of pocket. JuJu in the month of January had worked several 7-hour days, leaving Melissa short on hours the rest of the month. We told Melissa to stop the 7-hour days, inform JuJu that she could no longer afford long days, and that if she spread the remaining hours out the rest of the month, she should still have SOME time each day, the remainder of the month. Some days would have ended up being only an hour long and it takes longer than that to do a bath with Melissa because of her physical issues. Well, Member A didn’t understand. See, we had to wait until Melissa got her new hours in February. She would be all set come Feb. 1st, but until then Melissa was out of luck on that. Member A wanted to know why, if we told JuJu no more long hour days and we had it sorted for the rest of the month, why didn’t Melissa have enough hours. No one was telling Member A that the new hours didn’t start until February 1st, so she didn’t understand it. She has never had a caretaker in this way and so didn’t know how it worked, plus she lived in Australia where those things worked differently anyway. Finally, Emily tried her best to explain to Member A how it is that Mel ended up with no time left for January. That just because we decided that JuJu can’t work 7 hour days, doesn’t mean that they weren’t ALREADY worked and lost to Melissa. Just because we say “no more” doesn’t mean she doesn’t get paid for the time and therefore they are already “used” and gone. When Emily posted a few lines to start the process of getting Member A to understand this, Debra butted in and sent a bunch of text into the group messaging, sending what Emily had said off the screen. So, when Member A had asked a question, Emily replied to her. But Debra couldn’t see that Member A had asked a question because she drowned it, and Emily’s previous conversation, out with all her bragging about how good services were in Michigan. Of course, how good services are in Michigan is beside the point and doesn’t help Melissa’s caregiver issue. Anyway, Emily answered Member A’s question. Debra *thought* it was directed at her and snapped “I know how the hours work, Emily” and sent several other snippy remarks and so Emily stopped talking altogether in the conversation. Debra *did* later apologize in March, when it was pointed out to her. And Emily, the total diplomat that she is, pretended to not know that she was once snipped at. She wanted that conversation to continue so she avoided the issue and left it at that. However, Debra did not help Melissa locate a new caretaker as promised. She did not ultimately, call an ombudsman either. She did not arrange the appointment with a local pastor that she promised Melissa either. She promised it because she bragged about her church family and Melissa wanted to become a member of that church, possibly.

She wanted to meet with the pastor first to determine if it was a good fit. For over a month, we waited for Debra to ascertain that there was a local church, they were willing to meet with Melissa and to set up the appointment. Mel waited for so long, that she went ahead and contacted the pastor herself and set up their appointment. The first one was rescheduled by the pastor for some reason and then they finally met the first Sunday of February. It did not go well. They told Melissa she was “too needy” and “high maintenance” for them. They would be unable to assist her in any way. After reading Debra’s brags about all the help church members get, including meals on wheels, this was a total disappoint to Mel as well as triggering for her because of the terms they used. There is a reason I keep pointing out the promises that were not kept or the promises that were kept but took so long for to do. I am especially pointing out the ones that took her SO long to do. There were many but I am not going to cover each one in as much detail because this post is already long enough and will be longer still. It helps to illustrate my point with just these few.

I am going to present *my* side, and to some degree Melissa’s side. I will even attempt to show Debra’s side as far as I know what it is. I will be as fair as possible. It was earlier in the week when I had pointed out that she once snipped at Emily but at the time we all shrugged it off. But this week, something else came up and I pointed it out how she was “always” this way with us. I cannot recall what it was but I do recall the feelings associated with it. It was Debra being a snob again and I was mad that she always put people down, belittled others, and even got snippy. Debra first denied this and then apologized to Emily in a “if I did then I’m sorry” kind of way. I let it go at that. My point was made, I offered an example of my point, it was accepted and apologized for.

It was in early February when Member A had been left out of another group chat amongst us as Melissa had un-friended and blocked Member A. Why? It was because during a crisis Melissa was overwhelmed and trying to get through to one of us so she could call us and tell us what was going on and what she needed. Member A kept asking questions and Melissa couldn’t deal with answering them AND getting out what she needed to get out. Debra did allow Melissa to call her and it was during that phone call that Melissa claims Debra told her to just “block her then” when Melissa told Debra how the questions were overwhelming her at that point and so she did. Member A never really knew why until later when I told Melissa it was okay to re-friend Member A as it was understandable she was just having a moment and what *I* would have done at that time was to tell Member A myself, “You are currently overwhelming Melissa. If you have questions, it’s okay, just wait for a bit while she’s on the phone. Once she’s calmed down, she’ll be able to answer your questions.” and that would have been it. Member A has an autistic son herself and knows this about her son. So, I felt she would have understood where Mel was coming from. So, our conversations continued in the original private chat with Member A.

Then on a Monday, on or about, March 17th, 2014.  Melissa was having a crisis. All afternoon Melissa had been upset and wanting to talk to Debra. Debra said it would be okay, but first she needed to go to the bathroom, take some meds, and get sorted out. I had thought she had done that and then she called Melissa. Later on, in the early evening, Mel was in the group chat, frantic. There was noise coming from a car club down the street from her house. The noise of the cars, the music, and more was pounding and make her walls tremble. For those who do not know, some people with autism have sensory issues. some of those issues come with a hyper-sensory hearing. A whisper can sound like a shout. Imagine then, how this must hurt Mel’s brain to have noise THIS loud. And no, headphones do not help as they cause a sensory issue of their own and really, Mel feels and I agree, she should not have to wear headphones inside her house. There is a noise ordinance in effect 24/7 in her town and this group was breaking it at 10 p.m. or so. Mel needed to call someone and since Debra still had not gone to the bathroom nor taken her meds at this point, I said Melissa could call me.

She had already called me several times a week at this point and mentioned to me how much easier it is to talk to me because I listen to her and she feels calmer while talking to me. It had already been noted at this point between Emily and I, privately, that it seemed to us that Debra riled Melissa up rather than calmed her down. If Mel was having a good day, and she talked to Debra, all the sudden, she was no longer having a good day. There had already been the incident where Debra had Melissa repost in our private group screen shots of emails that had caused such pain to Melissa between Melissa and another and there was no point in posting those pictures. And anyone, who had been working with people with autism for twenty years, can tell you that people with autism do not let things go easily. They will replay events in their mind especially if there are triggers around that remind them of that event. So what was Debra thinking? I asked on that post WTH?? Why is this here? What does this have to do with Mel leaving for Michigan or moving anywhere for that matter? As that was the point of the group. To post things about that specific purpose. Links to services, resources, etc. to help Mel survive and/or what she can look forward to once she got to Michigan. Why then, tell Melissa to post this into the group chat when it only served the purpose of reminding Melissa that she had lost a real life friend and one that she had treasured because Melissa got scared and pushed the kind woman away, again. Debra said it wasn’t her that brought it up and that Mel wanted to post it it the group and Debra had told her to go ahead then. Melissa stated on the post “I’m posting this here because Debra wants me to.” and posted it. So, really? I think Debra guided Melissa in remembering that time and posting those pictures for some unknown, but clearly wrong, reason. It was incidents like these that got under my skin and during some moments, I would not and could not not say anything. I was making Debra mad whenever I did so. And that night would be no different. So, Melissa was on the phone with me, I was hearing the noise over her house phone and into mine. She was frantic and scared on top of that. She wanted someone to call the police for her. She is incredibly afraid of the police and would ask others to call for her. Debra had called for her already this week. She was getting increasing bully incidents as well because she had fired JuJu and JuJu was friends with the business employees. It is Melissa’s belief that she was being retaliated against for the firing of JuJu. A reasonable belief!

The police had responded earlier and was able to get and pull over the cars that were causing the trouble earlier in the week, according to what they told me when I had called later in the week. The police chief told me they were well aware who Melissa Fields was and her problems on that street. They had been able to verify and document that she was being harassed by these cars but that they were doing it in such a way as to be hard to prove in a court of law so their hands were really tied. Unless and until they actually got onto Melissa’s property, there was nothing they could do except to keep responding to calls. The police chief apologized to me again that Melissa was too afraid to contact them herself but understood as he had read files from the incidents before he became chief. The police were NOT friendly to Melissa before and felt that she was delusional. Is it any wonder Melissa feared the cops? Debra knew this and that is why she would call on behalf of Melissa when it warranted it. This night, I and Melissa were on the phone and I was attempting to calm her down. To remind her that people are going to make noise sometimes and that not all the time is it going to be directed at her personally. However, she was so scared that I felt maybe it was prudent to call the police. She was in such dire straights though that I did not want to hang up with her to call them. She typed into the room at Debra (who was there and going on and on in one of her babble modes telling us all about her plans for the impending birth of a grandchild and all the furniture they had got for that and what wonderful people they are to spend so much money on the impending grandchild). Melissa tried to interrupt her to ask her to call the police again for her. Debra did not appear to see Melissa’s words at first but then did so. And said she called and then she babbled into the chat all that was said between her and the dispatch officer. This time, there were several cars from the car club that were harassing Mel and driving up and down the road, drag racing. So, Melissa was trying to give the information to Debra in the chat room, the relative information but was unable. So, she had called me and asked me to type for her. I did so, and Debra was able to ascertain the make/model, etc of the cars that were doing the racing. She said that dispatch sent the cars, etc. and that she talked with Detectives, etc. I mean, really it was a LONG description of what all was said and she repeated it four times. Suffice it say, the cops were called, dispatched, and had even already patrolled the area and the offending vehicles had been pulled over. Debra was still now babbling into the chat room about all that and the phone call and telling us she needed certain information to call the police back with JuJu’s information. The detective had requested certain information that Debra did not have on hand and she felt it would be easier to just ask for it again from Mel. Mel typed it into the room and Debra didn’t see her actually tell her NUMEROUS times this information. She was “stuck” on telling us about the conversation and why she needed the info.

Mel was getting upset because she wanted Debra to hurry up and call back the cops with the information now that she had it. But Debra kept chatting into the room about what was said, which she had already told us a number of times, five or six at least by this point. She then began talking about getting a protective order (she called it a PPO) and we were discussing the options of getting a PPO and how Mel would go about it. I typed into the chat room earlier to Mel how we can go about it, what steps she needed to take and all that. Mel would not be able to do it right away because her new caretaker (the one she found on her own) did not have a vehicle yet that Mel could ride in. That would not happen until the caretaker got paid. Debra kept asking questions of her like “Don’t you have office max there? we can have them do this” and so on and Melissa was taking it like Debra was calling her stupid. Mel KNEW what she was going to do. She and I had already discussed it, already knew what steps needed to be taken and when to get a protective order against JuJu. So why was Debra now ranting about it? oh, because she didn’t think I knew what I was talking about! Wrong. But that’s okay, if she wants to double check, I told Mel that’s fine. It’s okay and I didn’t care that Debra didn’t think I knew what I was talking about or that I made the phone calls to ascertain this information, etc. Who cares what Debra thinks of me? I didn’t! That was not why I was there. I was there to help Mel not play games. So, Mel was on the phone with me again and asking me to type into the room for her as she had “lost spoons” again. Melissa asked me to type for her since she was so overwhelmed from the days/nights that week and she was too weak to break through Debra’s babble mode. So, I did. I typed whatever Melissa told me to tell her. Debra didn’t seem to pick up on that even though I said, “I’m on the phone with Mel now. She’s overwhelmed again and wants to make sure you *are* going to call back with that information to the police department”… Debra went on and on for quite some time. By the end of it, she was mad at me and I didn’t give a damn. She never, not once, said she was on the phone with the police again. Not once, never, did she say at THAT point that she STILL needed to go to the bathroom and take her meds before calling them back. Not once, NEVER, did she at that point reassure Melissa that she even WOULD call them back TONIGHT. But Debra kept harping about getting the PPO and finally I typed into the chat, “Well, Melissa can’t just HOP and do anything quickly” because Debra kept saying it would “only take a minute or two to hop right over and pick that up.” See, if people have chronic illness, they would know, one does not “hop right over” and do anything.

We were discussing earlier that evening how we would print the “evidence’ we had of JuJu’s harassing phone calls, etc. Melissa does not have a working printer. Debra said that was okay, she could print it and fax it to Melissa if not the court directly and Debra was trying to find out if Melissa had an office supply store to which she could fax it to, if need be. She was STUCK on that issue. We were not worried about the PPO at this point. No place was open anyway so it’s not like she was going to be doing anything about it at that point. At that point, we were all wondering if she was going to call the police back. It had been almost 20 minutes since Melissa gave her JuJu’s information so that Debra could call them back and give them the information they were looking for. Twenty minutes of going on and on about this dang PPO and Melissa is terrified that the people in the vehicles (and one motorcycle) was going to come back and harass her and the cops weren’t going to do anything next time if Debra didn’t give them that information (they would have but Mel couldn’t process that. Only that the cops wanted the info and a call back with that info). So Melissa and I both were frustrated by this point. Because, as I’ve said, Debra NEVER acknowledged our questions about whether or not she was calling back. So, I mentioned into the chat how long it had been since she got the info  and when did she plan on calling back? She got pissed. She felt unappreciated! How dare I question her? She’s so sick and was only wanting to go the bathroom and take her meds and here she is, again, dealing with a Melissa crisis (no matter that she ASKED to be the one to do it) and I didn’t have to deal with calls from Melissa. Really? I was on the phone with her right then! And had several that week. And need I point out that I have had countless calls with Melissa in the four years I’ve known her? Do we talk all night/all day? No. Because we don’t have to. She calls in panic, I calm her down and she goes about her life all happy again. It doesn’t take  all day/all night to calm her down after a noise or a bully incident. It takes about 20-30 minutes and then we’d talk longer just to be talking. I enjoyed talking to Mel, maybe not the crises, but the after chat. I didn’t get what Debra was resenting so much for. She complained about how much time away her family meant with this.

Well, then, say so! Say you don’t want to be her go-to person for calls. No one is FORCING you to answer the phone calls. She claims NOW that Melissa would “blow up” her and her hubby’s cell phone if she didn’t answer. Just yesterday, Melissa called me while I was out. I was not online and then when I got back, I went to bed, never calling her back. I had fallen asleep waiting for my tablet to charge up or for my turn on the one computer in our home. I told her why I didn’t answer her call back this morning when I got up and on the computer. However, she didn’t blow up my phone. She only called  once. How is that blowing up a phone? Melissa has often called me during a crisis and when she doesn’t get an answer the first time, she’ll move on to someone else. She does not “blow up” someone’s phone. Maybe it is because Debra promised to be available 24/7 365 days a year for that purpose that made Mel do that, I don’t know. Mel claims she did not do it. But if you claim to be “on call” for someone for this very purpose as part of your ‘services” how do you then have the right to complain about them taking you at your word and up on the offer? Which is what Debra now does. Well, suffice it to say but after that phone call, and chat, Debra then said she was on hold with them the whole time and she didn’t appreciate being made to “jump” when I said jump. She failed to again, realize, that it was not I requesting the “jump” in the first place and in the second, I did not point out long it had been in an effort to make her “jump” but that it was because she had a history of saying she’s going to make a call but then puts it off so long that it becomes a moot point. So, how was I to know that this wouldn’t happen this time with the phone call back to the police? I mean, we’re in a crisis right now. Telling me how awesome you are, and all and telling me how much experience you’ve had, and telling me how much money your hubby earns, and telling me how many “messy” cases you deal with, isn’t going to get that phone call made any sooner. And if you needed to go to the bathroom and take medication at that point, then shut up and do that! That is basically what I told her although not in so many words. I told her I recognized her behavior as a symptom and I”m sorry if she’s mad at me but I was acting on the behalf of Melissa who needed me to break through and get her going on DOING it rather than TALKING about it. She could relay the details of the first phone call later, all we needed to know NOW was that she had made the first call, the police were on patrol and now she is going to call them back with this new info as soon as she takes a bathroom break and grabs her meds since she hasn’t been able to eat all week, and blah blahs. Well, I got snippy then for sure. I said, “Really? If you have the worst known case of gastrointestinal disease there is, and you won’t even name it, and can’t keep down crackers what are you doing eating at Steak and Shake for?”

She got really mad then and started blasting me for daring to ask her such a question. I was basically calling her a liar. I know all about IBS/IBD. She claims there is something WORSE than IBS. I agreed, it’s called IBD, Chron’s Disease is a form of IBD and it’s the one most painful disorder out there. I know because I have it. I often call it IBS as people recognize  that term more and I don’t have to explain the difference. For my purposes, it fits the bill. I’m not complaining about my symptoms, etc. just making a mention of it long enough to point out that my relating to them and their current suffering is sincere. As I often commiserate with others over their various times of need, etc. In an effort to show compassion and understanding and make them feel at least a little understood. Debra wanted to go on a urinary competition with me over who had worse earlier that week. I really can’t stand that behavior. It gets on my last nerve. But I wouldn’t back down.

And so Debra continued to mention all that she had to give up to be there for Melissa. Well, that’s a guilt trip and I don’t like that either. Why… why point it out to someone? What is the point? Except to guilt trip them? To let them know what it cost you? Mel appreciates her friends and those that try to help her. She *already* feels bad at being so dependent on others and unable to give back to the same degree. If you do this, if this is your thing, and you do it for free, and you’re so spiffy special and awesome, wouldn’t you do it and not constantly remind the person you’re helping what it costs you? I mean, really. It’s not very classy, in my opinion. It’s a manipulation tool. “Hey, I do this for you. This is what it costs for me. Do what I say now to make it up to me” is usually how that goes. And Melissa told me it seemed that whenever Debra went for her pity parties, it usually was followed up with a request (such as that she block this person, or unfriend that person, or fire this person or fire that person or agree to these terms, etc). Maybe not right then but soon after. After Melissa had apologized and ending up in tears over her guilt. And willing to do ANYTHING to pay Debra back for her ‘kindness’ and to keep Debra around for helping her. After Debra turned on me and got so downright mean to me in the chat room, Melissa decided she was going to block and unfriend Debra. She removed her stuff from the website area that Debra had created for her (it was a place holder, she hadn’t actually yet designed the website, etc. with all her fancy knowledge) and removed her stuff from the private group since Melissa couldn’t kick her out out of that group since Debra created the group. Melissa made herself a new group and the remaining members were invited back into that one. I told Melissa that is probably for the best anyway, that way Melissa has total control over the content, members, etc. that belong to the group and whatnot and wouldn’t have to rely on Debra or anyone else, for that. Melissa had become *very* dependent on Debra. Why that was? Well, I could speculate but that’s all it would be. I speculate that it is because Debra is the type of person who goes online and offers their services. And then works to isolate a person from their other friends, slowly and over time. So that they are the sole person that a vulnerable person would rely on. Melissa is such a person that would fall victim to this type of person very easily. I think Debra recognized that desperation in Melissa and used it to her vantage. She wanted someone she could claim as a boost to her ego. “Look at me !! Look at me !!” type of thing (yes, I typed that as if Debra said it but she didn’t). She liked the adoration and accolades she got for being “so kind” to do this for Melissa. She got her ego fed. But when push came to shove, she couldn’t deliver. Maybe it is because she had chronic illnesses. Maybe it is because she shouldn’t be offering to be on call all the time. If she was available in the beginning but was no longer available for such things, then she should have told Mel that. She should have told Mel she was beginning to resent all the time away from her family and the planning of the new baby’s arrival. Not take it out on her, me or anyone else. There were several times in the last two months where we didn’t see Debra in the chat for several days in a row.

When asked about it by Member A, Mel told her “Oh, it’s okay. I talked to her the other day and she is just busy with baby stuff. She’ll be on when she can.” Does that sound like someone who is blowing up another’s phone because they’re unavailable? Does that sound like someone who doesn’t understand that life gets busy for all of us? I mean, after  all, Debra was called in because I told Mel I couldn’t do it anymore as I was sick again. I thought my cancer had come back but alas, it was mold in my house making me sick. And Debra presumed to lecture ME on what it was like? LOL! She kept saying it wasn’t me on the phone with Mel all the time, etc. Um, sorry but I talk to Mel still, and I did what she did before she came along. She may not want to hear it because she wants to play a victim but it’s the truth. Mel isn’t abusive at all. So, then… that was that. That ended the friendship between her and I on Facebook and that ended Melissa and Debra’s friendship.

The next two weeks went by without any word from Debra. During this time, Mel was having a peaceful time. There was only one night of noise and it turned out to be a dance club was hosting an event  for the youth of the neighborhood and not one of the businesses across the street. Mel was able to handle that since she knew it wasn’t directed at her and she was quite calm. She was happy again. She begun to tell us about her and Debra’s phone calls. That Debra would call HER a lot of the time, too. She would call her in the wee hours of the night to talk when it was Mel’s Youtube time. You see, people with autism have and enjoy having a set routine. You disrupt them from their routine and it can cause anxiety and panic attacks. Apparently, this is what was going on all this time. And it explains why all the sudden Melissa was upset far more frequently by the goings-on in the neighborhood. However, Mel was puzzled as to why Debra flipped out on me. I tried to explain that from Debra’s perspective, she was trying to help you and I got in the way. She didn’t like that. She felt like she’d been doing all the work and then I come along and mess it up. She never realized that I was there before her, all along, and will be there after her. Mel believed she was better off without Debra as her friend since Debra obviously had problems of her own, she obviously had health problems and family to focus on. This was for the best. However, she just couldn’t let it go. She emailed Debra three times. Once was that night, on March 17th,  to tell her not to contact her again. The next was about half way through the time elapse since this last incident, on March 31st,  with Debra Brink and that was to ask her why she turned on us.

What was it that made her so mad? Well, Debra didn’t respond. We told Mel to leave it alone for awhile. When Debra got over her ego, she’d write back likely. We told her that she was probably at her daughter’s house since that trip was a planned thing and we knew she was going away the weekend after that incident… but Mel could NOT let it go. She posted her feelings about it and she vented in the new group chat about it. She talked about how down she was because, yet again, she felt thrown away. Like garbage. Debra had posted two pictures/graphics on her wall during the incident on March 17th.

debra3_17 debra3_17_2

 

She shared those with us and told us how much it hurt her that Debra would post that. She told us that she couldn’t understand Debra’s perspective at all. Of course, it is going to be hard as a person with autism to see another’s perspective but sometimes we cannot see it because it does not make sense. Personally, I think it all got to be a bit much and Debra was not prepared for Mel to have such supportive friends or even knowledgeable friends. She was not prepared for us to know what to do and it ticked her off whenever Melissa would listen to one of us instead of Debra. I am knowledgeable. I have shared with Mel various options. For various reasons, they have not worked out. Either the counterpart in CA who Mel would need to deal with refuses to deal with Mel and there is no other person to go to for that particular thing or Mel did not have the ability to go and do the things necessary for some other reason. Yes, it was always something that prevented things from getting done, but it was not Mel’s fault and it was not even because of Mel at all. It was out of her control or ability to make happen. We needed the cooperation of others to get this stuff done. It was THEIR job to do this stuff and yet, they refused. What else could we do? Well, we’d appeal, we’d plead, etc. We kept trucking on. I think Debra was really angry in the end because she felt used and abused, certainly.

She said that Mel would yell at her over the phone. Mel said she had to yell because Debra would not let her get a word in edgewise if she did not yell. She tried just talking over her but Debra didn’t hear her so she would yell. And yes, Mel yells when in panic mode and screams. It is emotionally hard to listen to someone in that much pain. But it does NOT break eardrums. I have sensitive hearing. I am unable to process some people’s voices and sounds if they are at a low volume. But I can hear just fine. I was able to have the phone to my ear because Mel would put her phone down/away from her to scream and clap her hands over her ears. So, if she yelled to the point Debra felt her eardrum “broke”, then I don’t know what happened. I don’t know how that is even physically possible since you cannot blow someone’s eardrum out via the phone with only one’s voice. It’s impossible for one to “break” their eardrum since there is no bone in it to break, by the way. But let’s go with her meaning that Melissa “blew out’ her eardrum. Even still, not possible. As soon as you hear that scream? Or any noise, you remove the source of the noise from your ear. It is a human reflex. And it would take a long exposure time in order for a human voice to “blow out” someone’s ear drum, even without a phone in the way of the process. Just impossible. Debra claims she did not have “enough time’ to move it away. I find that improbable.

Member A posted into the group chat (without Debra in it) the following, when Melissa feared her computer was having issues because of something Debra did. After all, Debra touted her computer skills so much, it was a reasonable fear to have. Member A posted this in response:

“Night Melissa, i dont know Much about computers, but i dont think you need to worry, I still have her on my fb friends for now, till i speak with her about what happend, and i have heard nothing, so I am assuming,she is doing what she said, and preparing for there trip to [name ommited]…I want to be carefull with what and how i say anything to her, when I do, as the last thing i want is to stir up any anger in her, that might reflect on you,after everything i have learnt about her today, through all of you, so i am still thinking on what to say.. I even thought i might just de friend and block her, without saying anything, i dont think any of her fb friends are on my list, but i am not sure about that.. still thinking the best way to go about it, I just want to make sure you dont have to deal with any more grief.. night night Love you xo”

This was after Member A had taken a few days to reflect on what had happened during the previous incident. When she said she wanted to take time away to do that, we all continued the conversation anyway. We told her that was okay, take all the time she needed. She was not present during the conversation at all as she had left the computer to let her son or husband on to have a turn. She came back during the end of it, when Debra had been so insulting to me and Melissa that I finally snapped. So, she saw right away my reactions and Debra crying for a pity party over it. She did not (immediately) see what had transpired in the hours before. So, she said she was going back to do that (reread) and would come back when she had a better handle on it. So, we continued the conversation and we all told our feelings about it. It turns out that Member B, Emily and I had concerns about Debra. Turns out, so did Mel. Mel asked me in that chat why did I not speak up when Mel directly asked me if Debra was okay. I said because I didn’t want a personality clash stand in the way of her dreams. I had no idea *why* I disliked Debra so much at that time. She’s certainly not the first braggart I had dealt with but she really irked me at times. And I didn’t want that to interfere because after all, this wasn’t’ about ME, it was about Mel. Member B didn’t voice concern because the one time she brought something up, she was pretty much shut down. Emily didn’t bring any of it up because, like me, she didn’t think it was fair to Mel. We were all trying to get along with Debra. It was that conversation that Member A refers to “learnt about her today, through all of you,”. Member A had developed a friendship with Debra outside of the group chat, you see. This is important to remember. That was the last we heard that Member B had spoken to Debra about Mel or anything at all. Up to that night, we had no clue that Member A was not only still talking to Debra but copying/pasting what we said to Debra. We do not know at this time whether she was asked to do that or if she did it on her own. I have a feeling that Member A was the only one of us that Debra formed an outside relationship with because Member A is also somewhat vulnerable to manipulation and it shows. She’s… very naive. And she seemed to have a problem following along, especially when the chat was going back and forth. Anyone would.

Well, Mel made a request that day. She asked (not demanded) that we all unfriend/block Debra as she is scared of her. She’s afraid of what Debra will do when she gets back from her trip and doesn’t want anyone to be a tool for Debra to use. She also didn’t want anyone else hurt by her. She also posted into the private chat all the names of Debra’s family so that we could unfriend them as well, in case we had friend-ed them. That was the only reason she had shared that information with us. Here is a screen shot of that conversation:

db4

This was *just* after Member B had received her first (of many) messages from Debra Brink. It would appear from the evidence that Member A had sent Debra screen shots or copy and pasted what was said to Debra Brink. Note the time stamp on the above message, as it is important to what happened next. Earlier, Member A had been in the chat room but not before this was posted. She had apparently sent all before to Debra Brink and Debra Brink was now starting her threats.

The message that Member B passed along was Debra wanted Mel to remove any mention of her from any public place. Here is PART of the Rant that she sent Member B:

“Conversation started today
Melissa Fields
12:06am
Melissa Fields

Heather, Debra is going crazy now, and REALLY threatenig me now!!!!!!
Member B
12:07am
Member B

As soon as our Grandson is born and Baptized within a few weeks of birth? Hubby and I will be in California to handle this all, and we will make sure we have our time in Oklahoma as well.
Member B
12:08am
Member B

Well, I don’t even know yet and have more specialist appointments to find out if my hearing is permanently damaged from the FINAL phone call with blowing my ear drum… on top of a nightmare that most could never wrap their brain around that I survived…. which is a MIRACLE I did.”

My message was logged by FB for me. You see the time stamps on when Member B posted this into the private chat with just me, Mel, Member A and Member B.  At the very beginning of that rant, you will see that she threatened both Mel and Me. And it was enough to scare Mel and she removed ALL mentions of Deb at that time. You can see between the two (the image above and this transcript). There are HOURS in between. Then, just during this, Member A comes back online from her son’s dentist appointment. She lives in Australia and the time difference is vast, of course. After some 40+ screenshots taken (as copying and pasting into the chat room was difficult for Member B to keep up, as they were coming in so fast, that she couldn’t keep up, so she started screen shooting on her cell phone instead.  There were 43 screen captures. Now, they don’t capture a whole lot at once, but she said she didn’t get it all either. Because it began to really scare Mel at this point and Mel wanted to stop seeing it. Mel was on the phone with me by this point, of course. Unfortunately for Mel, I was already having one of my bad days and ideas starting shooting through my head so fast that I was talking reallyreallyreallyreally fast and she couldn’t understand me much but we got through it. When I’m anxious, that’s what happens. Yes, it made me nervous to have an obvious mentally unstable woman threaten to “deal with” me. Especially after months of hearing about the unsavory characters she associates with!

I did warn you this would be long!

So, that was about 12:14 a.m. CST, USA. That was when Melissa decided to remove any and all mentions of Debra Brink from her FB even though she never used the woman’s name. She referred to her only as “my friend who lives in Michigan”… which is what really makes me think Debra Brink is LYING when she says people NOT on Melissa’s FB messaged her about it. No one from the outside would know who that is. It’s just a GENERAL location. And most of the posts were not PUBLIC. They were set to FRIENDS ONLY. So, I do not believe that anyone other than Member A came to Debra with information about the posts. Because most of the information Debra Brink talked about that night came from our private chat without Debra Brink in it.

Now we’re confused because how could Debra know all this? SOMEONE was sharing it with Debra. Was it Member A?

She had posted this before this evening:

 

 

Kath1JPG

Notice please, that Mel only states her hopes. She does NOT demand that anyone remove her from her friends list as Debra later claimed. She simply asked.

Now that was posted on 3/19, a full week and a half before Debra seemed to have come back to Facebook.

We received this on March 31, in with the rest of the images from Debra Brink’s message to Member B:

10168923_780130335330361_955185023_nSo, here is another threat.  These messages continued through the night. Well, because of this by 12  a.m. CST, USA that morning, all mentions of this so-called “Advocate” was removed.

Finally, Member A logged back in and apparently started sharing more with Debra Brink from the chat. The last message into that chat Member A hadn’t “seen” yet until that time when she came back from taking her son to the dentist where Melissa had listed the family member’s names. The one with the full names of her and her family for us to remove if we had added them and wanted to remove them.

threatone

 

And even AFTER removing the “offending” posts, Debra kept sending these types of threats. Now, Melissa is beside herself. Begging me and asking me am I sure the cops won’t come? Will the cops arrest me? I said, “NO!” Because she has not done anything wrong! Posting your opinion and perception of events is not a crime! Not civilly and not criminally.

I then posted on MY timeline:

Debra Brink. Debra Brink. Debra Brink. Debra Brink.  There, now sue me.” or something to that effect.

10156973_780131018663626_355540678_n10153368_780131015330293_1709624303_n

 

 

Melissa saw this screenshot and really began to get scared. She was very scared and terrified at the prospect of spending time in prison. I doubt she will unless she actually commits a crime at some future date from the time of this writing.  And I’d like to add that Melissa *has* been honest with me. She has told me EXACTLY and honestly how she feels about things. I realize that Melissa perceives things differently than others. I’m not stupid, either. I have called those in Melissa’s life before. I am *very* involved in Melissa’s life and have been from day one. Debra only had *one* phone call with Melissa’s mother. I have had five or six. I have talked to some of her siblings, I have talked to the police department numerous times (and not just on emergency calls either), I have talked to her case manager, I have talked to people at Tri-Regional Counties Center, etc. I learned from the last time I tried to help someone “get their story out” or to help them at all. It is best to do due diligence! And to confirm that the person is in need. I should have done some on Debra Brink herself. She claims to have references but has never given them to Melissa or anyone else in the group, that I’m aware of.

10149382_780131028663625_1114135467_n

Here is where Debra blamed me for it all and accused me of being “jealous” of her. Puhleeze. And will not do? Really? Ask Melissa Fields *all* that I have done for her in the past four years. And yes, I do understand “such things” More than she ever will know.

So, yes, I do know a lot and have actually lived a life! I have had experiences. I have had jobs. I worked on the books from age 14 until 2006, when I was medically retired for my health reasons. I know the law fairly well. I am not an attorney but I do know my rights. I have broken NO law. I have not HARASSED anyone.

db5Please note the time frame here. Member A had just returned and so she screen capped Mel’s earlier message about the family names. Member B typed “Hey” about an hour later after she had received this and the night had really gone to heck in a handbasket It was after I had messaged Member A directly, privately and asked if she had done this. I did not receive a reply. She then left the conversation. :

rhondahadproofofkathIt took us a few minutes to figure it out. I believe Member B may be an hour ahead of me based on the time stamps of her phone and the time stamps on my Facebook messages. The phone screen shots would be HER time and the Facebook snips would be MY time.

 

db2

This is when we received the threat that she would call and report Melissa for self-harm and suicide. Knowing how much it would scare Melissa (she said as much in earlier screen caps/messages). And Melissa *really* got scared she was going to be taken away to the psych ward. I told her I didn’t think Debra would really do that. It would be filing a FALSE report at she was not CURRENTLY self-harming. Debra had *no way* of knowing whether or not she was.

Well, little did I know!

Shortly after this occurred, the police knocked on Mel’s door.  She invited them in. She said, “Hi! Come on in.” and the police officer declined. He stated he could talk to me on her phone from her stoop (she thought it was raining and wanted him to come in so her phone wouldn’t get wet but it was not raining). The male officer got on the phone with me and said, “We received a report that Ms. Fields was presently self-harming.” Now, I could hear Mel talking in the background to another officer, who sounded female. I replied, “She’s fine. This is all over an online falling out she had with her friend in Michigan. She just told us five minutes ago she was calling because she didn’t like what Mel posted online in what was supposed to be a PRIVATE group chat. Someone told her about it and she got mad. So, she called you guys for sour grapes.” The officer thanked me and both left. Melissa was relieved that the officers did not take her away.

Now, look… yes, Melissa in the past HAS “self-harmed”. Yes, Melissa has, in the past, THOUGHT of suicide. She never has taken ANY action to commit suicide. She wouldn’t as she follows the Bible and the Bible says it is wrong. However, there was one incident where she “self-harmed” and then it was that she shaved off her hair. That doesn’t actually hurt Melissa, in any physical way that would cause death or make her have to go to psych ward. She screams, she yells, she may even throw things but one thing she does NOT do is hurt herself. You would think that if Debra has dealt with Melissa’s meltdowns all these months, she’d know that. And the “self-harm” happened over a year ago! This was a blatant misuse of police resources.

I have advised Melissa to consult an attorney and to obtain a copy of that police report. She will be looking into what legal remedies she has to put a stop to this harassment. We ended up ending our telephone call at about 5 a.m. CST, USA. We had been on since about midnight my time, when Debra first started this harassment.

I am not easily bullied like Melissa is. I have no problem with posting *exactly* what happened, and my opinions of what happened and the people involved.

I would love to tell Member A just what I think of her for doing that to Mel. She betrayed Mel. She pretended to be her friend in order to send screen caps to Debra Brink, knowing how vindictive she could be (we’d seen her act this way before towards another autistic person on her friend’s list on Facebook). I would love to ask if she feels good now having done that and caused Melissa so much trauma, again? Does she feel good knowing that she added the horrors that Melissa faces? What if it were her adult son with autism? What if Debra did this to him? Would she help Debra load the “gun” of revenge then? Would she feel justified in doing so? That was what was most shocking to me. That she would do that. After all, she had said in the private group chat: “I just want to make sure you dont have to deal with any more grief.. night night Love you xo”” If you want to make sure she doesn’t deal with any more grief, why would you tattle-tell?

I think Member A did write Debra that weekend as she had said she was thinking of doing. I think she told her all about our conversation. That she was angry at first, and then when she read that we all had doubts about Debra, and why we had had doubts, and what we felt had really happened, that Member A had decided to not be friends with Debra any longer. I think then Debra replied and manipulated Member A into thinking we were lying and twisting things around. And I think Debra conned her into spying for her. I’m not sure; I don’t have proof. But that is what I THINK happened.

There is a part two coming. It will help explain why I was *not* shocked in the end over anything Debra did. She acted just like someone else I knew once. My next post will focus on the behaviors and patterns of speech that will help you identify these types of people, too. They are dangerous to our vulnerable persons in the community. We are known for not being able to “read” people and situations for danger. Well, it took me two times to learn this lesson and I pray to God that it won’t take a third!

 

Part Two is here!


29
Mar
14

I am autistic

okay, that may be a “duH” thing to write as a headline but it seems many of my Facebook friends fail to remember that. I don’t know how. I exhibit many of the symptoms. It seems to be that it is because I type well.

Well, I don’t recall that being listed as a thing when the changes were being made.

Here is the DSM-V diagnostic criteria on severity and levels. I know I should be shot for using an Autism Speaks source but they were the top search engine return that fit my need!

Okay, so based on this new criteria, here is how I was recently re-labeled. (recently as in days ago). I use excerpts from the cited website above and from my doctor’s notes on his findings. (I always get a page by page copy of my medical records to keep on hand. They have come in handy, in particular for cases such as this evaluation.

“Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history:

Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.”

From my doctor’s notes: ” Ms. Johnson shows deficits in social-emotional reciprocity. She fails in social approach (based on documented medical records from birth to present day) and failure of back and forth conversation. She often stares in a state that makes her look like she’s daydreaming while someone is talking with her, including this physician during our interviews. She reports that she “zones out” when trying to converse with others after her interest in what that person has to say wanes. Ms. Johnson does seem to have improved in recent years in her desire to initiate and respond to social interactions but has not been able to follow through except in online contexts.”

”  Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.”

From my doctor’s notes: “Ms. Johnson has deficits noted in her medical records which were provided to this physician and covered from birth to present day. She does not consistently and successfully use nonverbal communicative behaviors in social interaction. As observed by this physician, she presents with a total lack of facial expressions at times and does not seem to understand nonverbal communications used in many contexts. She probably succeeds more in her online social interactions because nonverbal communication is not used in that form. She makes minimal eye contact with others, as observed by this physician, and often uses  a coping skill of looking at a person’s nose rather than their eyes.”

“Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.”

From my doctor’s notes: “Ms. Johnson is an adult at present and some of the observations come from her previous medical records and some from this physician’s personal observation. Ms. Johnson states she can only recall two incidents where she initiated “making friends” with another person. A first grade teacher provided a report to a military physician in 1984 that Ms. Johnson, as a seven year old, “does not seem to play well with others and prefers to play alone or alongside her classmates. This is not developmentally where she should be.” Ms. Johnson stated that she lost contact with her sister for 10 years and only realized she missed this sister when she came into contact with her again online last year. Ms. Johnson further stated that she has always felt “if my friends were out of sight, they were out of mind” and she does not actively seek to stay engage in her relationships. She waits for her friends to call her or message her on Facebook, a social media website. The only exception seems to be her biological father.”

“Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history

Stereotyped or repetitive motor movements, use of objects, or speech” and

“Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior ”

From my doctor’s notes: “Ms. Johnson does present with repetitive motor movements also known as “stimming”. She moves her hands in a manner that could be described as “flapping” or “trying to clap with one hand only” while waving the arms around. Ms. Johnson does carry a co-occuring diagnosis of Obsessive Compulsive Disorder and therefore also shows repetitive patterns of behavior, interests and activities as a part of that condition. It is unclear which diagnosis is the cause of that behavior at present. Nor is it clear at present which disorder causes the inflexible adherence to routines and ritualized patterns. For instance, she does things so that they are done an even number of times, often repeating phrases so that a phrase is said an even number of times. She once refused to sit in an office when it had three chairs instead of an even number of chairs. ”

” Highly restricted, fixated interests that are abnormal in intensity or focus”

From my doctor’s notes: “Ms. Johnson has a varied amount of interests and states that she “collects” interests to obsess about. However, this physician has noted that her interests are abnormal in intensity and focus both from observation and in documented history. Ms. Johnson reports that she “cycles” through her interests. She will spend days or weeks focused on one interest and then move to the next and so on until she is back into the original interest. This method of cycling is part of a ritualized behavior as she starts with the same interest and moves to the next interest in the same pattern each time.”

“Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment”

From my doctor’s notes: “Ms. Johnson has both observed and documented in  history of hyper and hyporeactivity to various sensory input. She has exhibited a high pain tolerance in documented history. There is documentation that she has failed to wear weather-appropriate clothing when allowed to dress herself as a child. She reports that presently she often leaves the house without a coat even during winter months. Again, with her OCD diagnosis, it is difficult to distinguish the behaviors between autism and the OCD. She reports that she routinely spends time sniffing the air while taking a tour of her home, to check for smells of something burning. She often touches the walls as well to make sure they are not hot. Ms. Johnson does exhibit an unusual fascination with visual stimulation. She has documented history of poor visualization skills and this may account for her fascination.”

Severity is based on social communication impairments and restricted, repetitive patterns of behavior

“Level 3
“Requiring very substantial support

Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning, very limited initiation of social interactions, and minimal response to social overtures from others

Inflexibility of behavior, extreme difficulty coping with change, or other restricted/repetitive behaviors markedly interfere with functioning in all spheres. Great distress/difficulty changing focus or action.”

From my doctor’s notes: “While Ms. Johnson is able to verbalize her communication, it does appear to come at a cost to her.  As the first hour-long interview came to a close, Ms. Johnson appeared more tired and less aware of surroundings than when first started. She was confused and was unable to navigate her way back to the exit on her own and required assistance in finding her way. Ms. Johnson reported on the second interview that she found it hard to “function at all” after the first interview was conducted and she returned home. When functioning does become difficult, she prefers to go to her bed and retreat from the world around her. Ms. Johnson receives daily care from up to three caretakers in a given day. It is this physician’s belief that if Ms. Johnson did not receive such substantial support as she does from caretakers, friends and family members, she would  ultimately be institutionalized or at the minimal, in an assisted living facility or group home. She is unable to act on a prescribed budget and make sure her expenses are paid in a timely fashion, she is unable to remember to eat on her own, or to take in liquids. She is unable to leave the house on her own much of the time, requiring an escort. Ms. Johnson has many physical, biological, and neurological conditions that contribute to her depressed functional abilities; however, it is this physician’s opinion, based on observation, interviews with patient and others, documented history, documented testing and results, that Ms. Johnson should carry the diagnosis of Autism Spectrum Disorder, specifically, Level 3.”

 

So, what does this mean? Well, it means, dear concerned parent of a child with autism, I am not “high functioning autistic”. Not that I find it to be an insult, mind you. There’s nothing wrong with being labeled as such, despite what some of these parents seem to think. It means I am more like your ‘severely autistic’ child than you think. In fact, I bet your child and I carry the same diagnosis.

 

I want to take this moment to also point out how unfair you are to your child. I am now 37 years old. How old is your child? Five? Three? And you want to compare his current functioning level to mine?? I have had YEARS of maturing and growing and learning.. decades! Our arc of maturity may be longer than a neurotypical person’s but that by no means should suggest we ever STOP.

I work with my sons’ therapist all the time. When he notices we are attempting to teach one of my son’s a skill that I have yet to acquire, I teach myself first and then my child. Much like a parent who doesn’t “get math” will first try to understand his or her child’s homework assignment and then assist that child with a problem. So, I am always improving. Always adapting. So will your child. Please, though, stop comparing your children to the autistic adults you come across.

Please, stop accusing us of being “high functioning’ as a way to mean that we’re not “as autistic” as your children are. Please, stop believing that even if we are not as severely autistic as your child is, that we do not know some of the things your child experiences or that you cannot learn from us.

Oh, don’t get me wrong. There are some autistic adults that are as “bad” as these parents I’m currently talking to. It’s okay to say that parenting a child on the spectrum is HARD. Why? Because parenting a child, period, is hard. I don’t know any different though as both my sons have a form of autism. However, I recently adopted a 17 year old male who does not have autism. And in the 3 weeks he has lived in our home, he has become a member of this family, and I treat him like I do any of my sons. Just because he’s neurotypical doesn’t mean he’s any harder to deal with than my other children. I love them equally. 😀

Seriously tho, folks. Stop it. Just stop it. Stop assuming you know my severity level because I can type 108 wpm, on average, sustained over a five minute timed test.

As my father pointed out yesterday… I may have much knowledge gained from memorizing books but it doesn’t mean I can apply it effectively. Just because I can type doesn’t mean I can talk. Just because I can type, doesn’t mean I don’t also wear adults diapers (because I do). Just because I can type, doesn’t mean I’m able to, on my own, pay my bills on the day they due (not because of lack of money but because of lack of thought). Just because I can type, doesn’t mean I can get organized and clean my house on my own. Just because I can type, doesn’t mean I don’t have executive function issues. Just because I can type, doesn’t mean that my autism is any less pervasive than your child’s autism. Just because I can type, doesn’t mean I don’t have challenges that come with autism. I have overcome many of them and some I overcome daily in order to interact with you. Why? Because I do care about your children. I care about my own children. I want their world to be a more accepting and less judgmental place when they grow up and enter it.

 

 

28
Mar
14

The CDC has new numbers for autism

Every time the CDC publishes a report with a new ratio for how many children are diagnosed with autism, I see a massive posting about it in my newsfeed on Facebook. This is because many of my friends on Facebook either have autism themselves or have children with autism. My friends span the political spectrum (Yes, governmental political spectrum as well, but I’m talking about autism politics). So, every time numbers come out, new panic arises among a certain sect of the autism community–namely those who are against vaccines as they believe that autism is caused by vaccines. However, just because they believe it to be true, doesn’t make it so. And every time numbers come out, I feel like I have to defend my right to exist as well as my children’s right to exist. Those who insist on instilling FEAR of autism make me feel like they wish *I* and my children didn’t exist.

This is what I posted on my timeline after reading the news about it online.

forblogpost1JPG

 

I have omitted the names of those who have commented on my wall, etc. as I do not wish to embarrass them or cause them any drama! Not my point here. Note how the parent of a child immediately went to the “but you’re excluding those with severe autism!”

What I responded with is true and factual. What she wrote was true and factual. However, there was a lot left unsaid.  And even after this blog post, I suspect I will not have addressed all aspects. If there’s any you wished that I bring up but didn’t, feel free to post in the comments on the blog.

In fact, one article quoted the CDC report thusly: “The largest increase was seen in children who have average or above-average intellectual ability, according to the CDC. The study found nearly half of children with an autism spectrum disorder have average or above-average intellectual ability — an IQ above 85 — compared with one-third of children a decade ago.”

Now, I know that “severe autism” does not necessarily mean “low IQ”. However, it can appear that way. If a person is so severely and pervasively affected by their autism, it is not likely they will score well on an IQ test. So, it seems the CDC is actually stating the rise is in “higher functioning” autism. Of course, in this parent’s own post on her timeline, that was overlooked entirely.

This is what she posted on her timeline. I’m not sure if she wrote it (she didn’t quote any source, either herself or another) but it does look like “talking points” type of post that many people will copy and paste to help spread fear of autism.

forblogpost2JPG

Let’s take it one line at a time, shall we?

“If 1:68 people suddenly lost the ability to use their cell phones, panic would ensue.”

Yeah, because the loss of the ability to use a gadget equates to a neurological condition, how? Panic would ensue, don’t get me wrong. I know a lot of autistic folk use gadgetry to survive in this world and not just for its entertainment value, either. But I don’t see this as a good analogy for what they’re trying to convey at all.

“If 1:68 homes suddenly lost power, there would be “experts” seeking answers & researching solutions.”

One would infer from this that there are no current “experts” seeking answers and researching solutions. That would be false. There is millions of dollars being spent all the time on research. Even research that would develop a test to determine if a fetus has autism so that the mother has a “choice” on whether or not she *wants* a child with autism, because.. ya know.. we’re so difficult and cramp a woman’s style. We destroy marriages! We drain all your retirement savings! Because ya know, we’re not worth the cost.

“If 1:68 Homes were destroyed by a natural disaster at this exact minute, we would see a nationwide state of emergency.”

So, we’re a natural disaster now? Wow. Okay. But yeah, a state of emergency would be declared because homes were destroyed by a natural disaster. Is your home destroyed by an autistic child/adult? It’s possible as some do have behaviors that would put holes in walls, etc. But there is a way to correct that! And not every child (not every 1:68 child with autism) has those behaviors.

“If 1:68 people died from a “mysterious illness”, it would be breaking news.”

Well, you betcha! But when was the last time someone died from autism? Never. No one has ever directly died from having autism. Some people have been murdered because they have autism. Yep, but that’s not the same as dying from autism. Again, just another fear tactic.

“With the CDC reporting that autism is prevalent in 1:68, where’s the panic? The researchers and solutions? “

Um, I know many researchers are out there. There is some great researchers at the Kennedy Krieger Institute, for example. And they’re not alone. Remember, Autism Speaks spends MILLIONS of donated dollars to research, according to their supporters. So, who do you think they are paying that money to? Families who have children on the spectrum? Nope! People with autism? Nope! Researchers.  And the panic is there, too.

“Where’s the nationwide state of emergency? Where’s the breaking news?”

Again, this does not warrant a nationwide state of emergency. Besides, FEMA only pays for things like housing, food and other shelter. Autism does not cause one to lose their house, food and other shelter. This makes NO sense. As for where is the breaking news? On CNN, MSNBC, FOXNEWS, ABC, NBC, CBS, HLN,  and talk radio shows. It’s been covered since the report came out the day these snapshots were captured. You’re talking about because you heard the report being reported on, during a news segment, or most likely read an article about it online. That’s where your breaking news is.

“And to think, it’s even worse than the 1:68 that the CDC is admitting to with their latest reports. You see, they changed the diagnosis criteria trying to skew the numbers.”

Well, yes, let us think. Did the criteria change? Yes, the DSM-V did change the diagnostic terminology and criteria. It was NOT to “skew the numbers” at all but to clarify them. Because there are many parents doing diagnosis shopping. They *want* an autism diagnosis for their child. Or an adult *wants* an autism diagnosis for themselves. They don’t want to be left out of this newest trend! And that causes some challenges.

The criteria was changed in 1994 to include “Asperger’s Syndrome” among other changes. And it was not to skew the numbers then either.  To quote: It was the culmination of a six-year effort that involved more than 1000 individuals and numerous professional organizations. Much of the effort involved conducting a comprehensive review of the literature to establish a firm empirical basis for making modifications. Numerous changes were made to the classification (e.g., disorders were added, deleted, and reorganized), to the diagnostic criteria sets, and to the descriptive text based on a careful consideration of the available research about the various mental disorders. Developers of DSM-IV and the 10th Edition of the International Classification of Diseases (ICD-10) worked closely to coordinate their efforts, resulting in increased congruence between the two systems and fewer meaningless differences in wording. [emphasis added]

I know a lot of people who believe vaccines directly cause autism do not seem to believe that empirical basis is needed in studies, but it is if the study is to be believed as scientific. Because of the changes in 1994, many people were added to the spectrum who may not need to have been there. With the changes mentioned in this post, to the DSM-V, things WERE changed. But again, it was not to skew numbers. It was to clarify them.  To quote:

“How were decisions made about what would be included, removed, or changed?

APA’s goal in developing DSM-5 is an evidence-based manual that is useful to clinicians in helping them accurately diagnose mental disorders. Decisions to include a diagnosis in DSM-5 were based on a careful consideration of the scientific advances in research underlying the disorder, as well as the collective clinical knowledge of experts in the field. Advances in the science of mental disorders have been dramatic in the past decades, and this new science was reviewed by task force and work group members to determine whether diagnoses needed to be removed or changed.”
[emphasis original to source]

Please note that the clinical knowledge of experts was used.  So, the outcry for researchers and experts is being addressed.

oh! And to note, the definition of autism used in 2012, when the ratio was 1:88? They used the same definition this time, so no, they didn’t actually change any criteria to skew the numbers in the CDC’s report. So, whether this referred to the criteria in the diagnostic manual or the CDC’s report, it’s not true.

“They only estimate based on 14 states out of 50..and last, but not least- the data they released this information is based on data from 2006! That’s right, no child born or diagnosed after 2006 was even included in this report. “

Not True. It was 11 states out of 50. To be exact: Alabama, Wisconsin, Colorado, Missouri, Georgia, Arkansas, Arizona, Maryland, North Carolina, Utah and New Jersey. You will notice that population varies by state and so we get an average population rate, and averages are used in *every* CDC report. They take a sampling from each state that they sample every time they make this evaluation. They randomize which states they sample, too. This is called randomization and it makes a review more reliable, actually.  And they used averages in their final ratio, too. “The incidence of autism ranged from a low of 1 in 175 children in Alabama to a high of 1 in 45 in New Jersey, according to the CDC.” The average of their sampling came out to 1:68. This randomization and averaging helps weed out some variable factors. And repeat the claim before moving on to next point:

“They only estimate based on 14 states out of 50..and last, but not least- the data they released this information is based on data from 2006! That’s right, no child born or diagnosed after 2006 was even included in this report.”

Actually, no the data was not from 2006. It was data obtained in 2010 from children who were born in 2002, making them all 8 year olds. A lot of factors were included and assessed in the CDC report. ““We look at all of the characteristics of autism,” says Coleen Boyle, the director of the CDC’s National Center on Birth Defects and Developmental Disabilities.

“So we look at the age in which they’re identified. We look at their earliest diagnosis. We look at co-occuring conditions that these children might have, other developmental disabilities, whether or not they have intellectual disability, so essentially their IQ.””

And no, they are not going to look at children born after 2006. They are looking at 8 year olds, every two years. And to make sure they have complete records, they look at data once these children are 10 years old. So that means, those children who are eight years old in 2006, will be reviewed next time. And children who are born after 2006, will be assessed later.

Why? Because children are still only getting their first diagnosis, on average, at age four.  So that plays a factor at what ages they need to study. They want to make sure that children have had the time to get their diagnosis in. The CDC pushes for early detection as it is believed that the sooner a child is diagnosed, the better off that child will be once he or she becomes an adult. They track the progress of their push by evaluation of older children. Also, most importantly, they started with 8 year olds. So, if you’re going to compare eight year olds from 2010 to one year olds in 2014, kind of hard to get a direct comparison there to get accurate data. Accuracy actually matter in the sciences. I realize it might not matter in fear tactics. In 2012, the last time they evaluated 8 year olds from 2008, the rate was 1:88. So there was a 30% increase in two years of diagnoses. That is an accurate accounting of diagnoses, NOT necessarily an increase in occurrence of autism. That’s an important distinction to remember. “The report is not designed to say why more children are being diagnosed with autism, Boyle says. But she believes increased awareness in identifying and diagnosing children contributes to the higher numbers.” Obviously, it is not the only contributing factor, that diagnosis shopping I mentioned earlier is also a factor, etc. Schools giving diagnoses to children is also a factor.

I will also point out the person states that the data was collected in 2006. That means, the evaluation was done in 2008 (which report would have come out in 2009) and this post has probably been circulating since then, with folks just changing the ratio to fit the current CDC numbers. The evaluation done that year sampled 14 states. Maybe that’s where that confusion comes from?

 “My personal calculations estimate autism to be prevalent in 1:25!”

I do not know who “my” refers to. I don’t know if this person is a scientist. I do not know if this person has any knowledge of statistics and research. The claims made thus far suggest not. The fact that the source data used in this person’s calculation isn’t shared or disclosed is a huge red flag. The fact we do not know the sample size, who conducted the sampling, any affiliations this person has, their calculations cannot be trusted.

“No matter which data you use, you simply cannot deny that Autism rates are exploding. More and more families have a child (or more) with Autism. It simply cannot just be genetics!”

I’m glad this person allows us to use data that is peer-reviewed, scientifically based, controlled, double blind, etc.! Whew. Yes, rates do seem to be “exploding” at a 30% increase at present. Again, the factors contributing to that rise has already been discussed. It does not mean it’s an actual increase in occurrence of autism, just the diagnoses. So, no it’s not “just” genetics.  No one has ever claimed it was “just” genetics, either, that cause autism.

From John Hopkin’s: “However, part of the reason why no other risk factors have been identified may be that genetic and non-genetic factors need to be studied together in order to get a clear picture.  In other words, only when studying ASD cases with a certain genetic background may we be able to see that a particular non-genetic trigger was important.  Studies like this are only just now getting underway.” (March 28, 2014, online)

Maybe if they weren’t so bogged down trying to replicate the study done (and manipulated) by Andrew Wakefield, we’d be further along.

Speaking of the link between vaccines and autism, the same source as above had this to say:

There has been much recent discussion over a potential link between vaccines and ASD.  Concern has been expressed over the MMR (measles/mumps/rubella) vaccine and vaccines that contain a preservative, thimerosal (which contains a form of mercury.)   A number of epidemiologic studies of MMR vaccination and ASD have now been completed with none finding evidence of a link between MMR vaccination and ASD.

Epidemiologic data has recently become available on the potential association between thimerosal and autism.  These data do not support an association.  While it appears that there is no link between thimerosal exposure and autism risk at the population level, there may still be small groups of individuals susceptible to neurodevelopmental effects of low-dose mercury.  Research is underway exploring the possible mechanisms.

In sum, the available epidemiologic data suggest no link between childhood vaccination and autism – these data offer no reason why immunization should be avoided or postponed.

This actually confirms what I’ve said before, without any knowledge. That there ARE children who are injured by vaccines, but that there is no direct link between vaccines and autism. Vaccine injury is not autism.

 “And autism isn’t the only issue! More and more children continue to be diagnosed with cancer, learning disorders, autoimmune system disorders, neurological disorders.

When is the public going to band together against this?! Are you going to wait until it happens to you, or someone you love? If so, it won’t be long! Sad but true!”

I agree. Autism is not the only issue facing children/adults today. Adults are diagnosed with autism, cancer, learning disorders, autoimmune system disorders and neurological disorders, too.

Sad, but true. I am sure there are researchers researching all of those issues as well as autism. But this whole post uses fear. It’s a tactic one learns in marketing 101 at any college these days. If you want donations, you have to instill fear. You have to instill urgency. Why? Because why else would anyone donate to your cause?

Already this post is so long, but please bear with me!

forblogpost4JPGThis was a response to the above that she posted on her timeline. Another person (who had “No Vax” in her name) had made a comment claiming certain things and that was my reply to her. Parent of child, who posted the original one above, replied to me. “Look, I get it, you’ve come to accept your autism. Reality is not everyone has or ever will.”

I never once claimed that she did not wish well things for her child. I never once claimed that she did not want the best possible life as she can provide to him. And my having accepted by autism? So? What does that mean?

Between that and her comment on my post (the first screen shot in this blog), I believe she thinks I “suffer” from a higher form of autism than her son does. I don’t know where on the spectrum her son lies but I tell you one thing. I’m sick and freakin’ tired of people assuming they know where *I* lie on the spectrum just because I can type!

But that is for another post 😀

 

and these are my words….

 

 

 

 

 

 

 

 

 

18
Oct
12

Self-Respect and what it really means

Today, a discussion in a group on Facebook prompted me to share the OP on my wall for discussion. One woman  responded. I posted her response to the group it originated in, and someone remarked that it was a bit viscous and so she wrote out her thoughts more fully. Here they are, in case you missed it!

She wrote:

How about this—everything a woman wears (much like everything else a woman does) is cited as evidence that she lacks self-respect. Too revealing, and she’s a sex object. Too modest, and she’s ashamed of her body. Too formal, and she’s desperate for approval. Too informal, and she’s depressed and feeling unworthy of the effort. Try to balance, and you’ll end up in all categories at once. Any and every excuse to claim that women are mentally inferior and need to be protected from their poor, self-destructive decision-making.

Screw that.

If you wear short, tight, body-revealing clothing, congratulations! You obviously respect yourself enough to revel in, and show off, your body’s natural aesthetic beauty. Rock on. Keep respecting yourself.

If you wear old t-shirts, sweats, pajamas, or any random fabric you put no real effort into, congratulations! You obviously respect yourself enough to dress for your own simplicity and comfort, without regard to what others think. Rock on. Keep respecting yourself.

If you keep your body modestly covered under longer, looser clothing, or even if you wear a full-body-covering burqa with nothing of you visible but your eyeballs, congratulations! You obviously respect yourself enough to keep your body private and mysterious, and regard viewing of you as a a special privilege allowed only to those few whom you choose. Rock on. Keep respecting yourself.

If you dress up elaborately with tailored clothing, makeup, hairstyles, and carefully coordinated accessories, congratulations! You obviously respect yourself enough to use your appearance as art. Art is love. Your body is your beloved canvas. Rock on. Keep respecting yourself.

If you dress up in something completely unusual such as a dragon costume, a burlap sack, a wetsuit on dry land, or something Lady Gaga might enjoy, congratulations! You obviously respect yourself enough to look at your standard clothing options and think “none of the above.” Rock on. Keep respecting yourself.

If you go completely naked without so much as a loincloth on, congratulations! You obviously respect yourself not to need clothing or external adornment to shield or express yourself; you let your body speak for itself. Rock on. Keep respecting yourself.

You know why? Because ALL HUMANS respect ourselves. It’s in our wiring. Our survival instinct. To claim that someone lacks self-respect is to accuse them of lacking an essential piece of humanity. Self-respect is about who we are, not what we wear.

07
Jul
11

How can I help?

“The philosophers have only interpreted the world, in various ways; the point, however, is to change it.” ~ Karl Marx

Jerry and I like to believe we contribute to society in ways that help those who also find themselves in the margins of society, specifically those with disabilities. We do this quietly, usually, every day in some small, but significant way. We do not typically do these things in big ways nor do we pat ourselves on the back in a public way. We do not give ourselves awards and titles nor parades or parties. We do not do these things so we can then blog and brag. No, we do them as we believe it is the duty of all to affect change, in positive and beneficial ways, as each person has the ability to do. We know ‘small acts’ can cause riplles of change throughout the world; and, as we also know, ripples get bigger as they move outward away from its source.

So, why this blog post? Well, when we break from our typical pattern of keeping our good deeds quiet, there is usually a compelling reasons. This time, it is because someone asked us: “But I am one person with disabilities. How can *I* change the world?” I can answer tha with an example of how Jerry and I might do it and have done it recently.

On July 1, 2011, i stopped by and picked up a check by a business. Now, there are a few reasons why, but as is my right to do, I went to the bank the check was drawn on to cash this check, as I had done previously, with a check form the same business, drawn on the same account at the same bank. As I did previously, I pulled into their drive-up lanes to conduction this transaction. The woman on the monitor asked how can she help me, and I said “I need to cash a check.” She verified that I wish to cash a check drawn at their bank, even though Im not a member. I put in the check, and my I.D. and sent the canister through the tube to her. A couple of minutes past, and it was returned to me with the check and my I.D. She said she was sorry but that because I was not a member of their bank myself, I’d have to come into the bank and cash a check presented to me by one of their customers. Mind you, thi sis July in the dust bowl of Oklahoma. That particular day was 106 degrees, in the shade. And I am physically disabled (I’ve posed previously to this blog about my disabilities including COPD which gets worse in hot and humid weather such as that we were experiencing that day and as of tomorrow, I will be using  a power wheelchair). Since I’d been having problems walking, which includes episodes of syncope (fainting) and falling, I did not like this idea at all. In fact, I found it created a burden upon the disabled population. I wanted to know *why* they had this policy. What of the older citizens in this town?

I drove around and parked out front in the handicapped parking spot. I got out of my van, and walked up the sidewalk, to their entrance walk. This part was about 20 feet. I had to stop and rest; this was perilous as there was nothing around to support me if I started to fall! I continued another fifty feet to reach the actual doors of this place. I stepped inside quickly to the air-conditioned room. By this time, I was in so much pain, I thought I would fall right there if I didn’t sit down. However, I admit anger did spur me on by this point. Using the furniture along the way as structural supports, I continued after a brief stop. Once I got up to the window, I had to wait in line. This was another 50 feet (mind you, my doctor has limited my walking to 15 feet). Once I got up to the counter, I was panting and leaned on the counter itself. I presented the check and ID and mentioned to the teller there that I had been told it was the policy of this bank to make non-customers come into the bank and not use the drive-through. She said that was the policy because they want their customers to have the convenience of the drive-through without having to wait behind non-customers. I got a little angry at that because now I’m out of breath, suffering, in excruciating paint at this point, so some imaginary customer did not have to wait in line? There was *no one* in their drive through lane when I pulled up and none had come through while I was entering or by then. I said I realized she was probably not the person in charge of making such ill-advised policies such as this and may I please speak to the person who is. She said I would have to write the President of the bank (as she passed me my cash and I.D. back, making the transaction last about 2 minutes). She did not offer to give me the information for this person so that I could write. I asked “Is there no one on premises that I can speak to about this?” She told me no. I told her, quite frankly, that this policy is in error if they cannot make exceptions for the disabled (which I had informed the drive-up teller that I was disabled before pulling around and she had said “I’m sorry but that is our policy.”). I told her that it was unacceptable to me that I would have to spend 10 minutes getting my power chair out of the van, get into the building (that does NOT have accessible doors, by the way), conduct my transaction in approximately two minutes, just to spend another 10 minutes getting my chair back into the van. 20 minutes in 100+ degree weather can kill a person such as I in that circumstance. I started to make a point about the ADA (American’s With Disabilities Act) and as soon as the law’s title came out of my mouth, she flippantly told me “Oh, but we have the parking spots and ramps, Ma’am!” I realized I was arguing with the wrong person. This person obviously did not and could not understand my perspective and why it should matter to her. She obviously felt powerless to do any differently than she had. So I left with plans to find the contact information for the president of the bank. Upon returning home, I told my husband about this experience, in as much detail as I’ve shared here.

Subsequently, on July 5th, 2011, Jerry received a check from the same business, drawn on he same account from the same bank. He was actually told about this policy by the business at the time he was presented the check as several of their customers had called them and complained about it. This business was unaware of such a policy ever having been in place and/or enforced like that before and they were seriously considering changing banks as the actual building had moved across town to a new location and was no longer convenient for them anyway. They had stayed out of loyalty to the bank but if the bank ended up costing them customers, it would not behoove them to stay with the bank. So, he went to the bank and parked and went in, with not onl the intention of cashing this check, but to also speak to someone about this policy, in-person.

Amid shouts of “Can I help you?” from the tellers at the back of the building, Jerry walked to the side where the offices were and found the assistant branch manager and dealt with him directly. The assistant manager was very apologetic but said they could not make exceptions except as written in the policy which does not address the needs of the handicapped and elderly; only that the policy may be excepted during inclement weather. Jerry pointed out that 100+ degree heat was inclement weather to him and other elderly persons. The assistant manager agreed and provided the C.E.O.’s contact information, including email, the CEO’s assistant’s email and phone number and the Regional Manager’s contact information and email address. Jerry thanked him for his time and, after completing the transaction, left and came home. He told me of his experience, in as much detail as I’ve shared here.As with my experience, Jerr’s encounter left him dissatisfied with the outcome of this situation.

Jerry then proceeded to email the C.E.O. of this regional area bank. He provided the details of both encounters. He provided the reasons why this policy is ill-advised, including a description of the mental images of senior citizens passed out on their sidewalks from heat stroke. While that was not a direct threat of legal action, it certainly could have been interpreted that way.

Today we received a phone call where both Jerry and I spoke to the regional manager about our separate experiences and who exactly we dealt with. I could not recall the teller’s name but was able to describe her accurately enough so that the manager knew who I was talking about. As I had attempted to explain to the teller before being rudely cut off, I explained to the regional manager that ethical businesses should not just follow the letter of the laws, but also the spirit of a law. The ADA actually addresses this issue, either in its original version, an amendment or the case law surrounding its enforcement (cannot recall now). It is stated that businesses should not make and/or enforce a policy that creates a burden on the disabled population that is not also inflicted upon all other populations. In other words, this policy of the bank created a burden for disabled people who cannot easily get out of their car and walk into the bank and cash the check and leave. There is much more struggle faced in doing so by the disabled than by the non-disabled or the non-elderly. it is because a person of the other populations, in reasonable good health, would not suffer unduly from this policy, but we in this margin of society would, that this policy should not exist and if it does exist, disabled persons and the elderly should be exempt. (This information was also included in Jerry’s email to the C.E.O.) She wholeheartedly agreed with me and told me that she and the C.E.O. had met with staff at this branch to retrain them on this specific policy which does allow for multiple exceptions, including those who are disabled or elderly, regardless of the weather outside. it was not meant merely as a convenience for their customers as they value the relationship with their customers and friends as well. I gathered from her response and the emailed reply from the CEO that they indeed recognized the potential damage they were facing if they continued enforcing this policy as they had on July 1 and July 5, 2011. And the least consequence would have been the damage to their reputation.She promised that the teller who directly offended me with her comments about parking spots and ramps would receive additional training in sensitivity and how better to deal with the public. Businesses know that their reputation depends on their staff treating all those who visit their business, members and non-members alike, and therefore all should be treated with respect and dignity.

Now, with the way my autism manifests, it can be challenging for me to self-advocate. I can do for others the very same thing I cannot do for myself. One such thing is complaining. Whether I’m in a doctor’s office, a restaurant, store or a bank, if I’m dissatisfied, I tend to just not go back and whine about it to my friends and families. This is exactly what businesses fear! I have learned, however, with Jerry’s help that this is not only a disservice to me, but others as well who share my challenges. I am contributing to a societal standard that condones poor goods and/or services to a vulnerable population; a population that is made vulnerable by these very same social standards. Parking spots and ramps are not the only accommodation we need and deserve.

Now, this speaking up was a small thing. All told, including the time transacting business at the bank, creating and proofing the email, and talking on the phone, we spent approximately one and a  half hours. And yet, the changes will ripple. The teller at the bank who thought only parking lots and ramps were necessary to say that they were in c compliance with the ADA will learn all the details of the ADA, how best to serve disabled members of society, and how to do it with a freakin’ smile. *grins* That ripple, I am most happy about as I see that rippling out to affect those she knows and cares about as she tells them  “I have to attend seminars! waaa!”  I am sure by the end of her training, she will become a much more understanding and accepting person. Another ripple is that the rural town we live in has a huge population of disabled and elderly folk living within its city limits and just beyond in the county. Those who conduct business with this bank as non-members will not be afforded accommodations that they should have had all along. We may have even prevented an injury or health crisis to a disabled person within this very community who may have suffered heat stroke from getting out of their car, especially if they had to physically struggle with equipment. And the rippling effect will continue.

It is in this small, small, way that everyone can affect change in today’s society, for not only awareness of such issues but also acceptance. We can command to be treated with the dignity and respect every other population receives. We can command that businesses provide fair and reasonable accommodations to us as necessary as valued members of society. We do not have to spend thousands or millions of dollars on awareness campaigns to slowly but surely affect these changes around us. We only merely have to speak pu. We have to use our intelligence, in an articulate and reasonable way, to make sure that those who would deny us these things are educated.  Nearly every business executive in America today has attended business courses at college that teach them this sensitivity. However, it is because they do not experience it in the same way those of us who are in the margins of society do, they cannot always foresee how a policy, while well-intentioned but ill-advised, may inadvertently affect us. It is our right, our privilege, and our duty to speak up and educate whenever and wherever possible. Change cannot happen if the problems are not acknowledged and addressed appropriately by the very members of the population that is affected. This is how even you can help.




These are the types of things I talk about

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