The International Autism “Blacklist”

10/03/2011 (I was without internet for three days and wrote this during that time)

I said I wasn’t going to write about Zoey Roberts again and I had every intention of not doing so. Something so heinous occurred that I must speak out, however. There was created a page, called The International Autism “Blacklist” on Facebook. This page, according to its latest description as of this writing (and may change prior to publication as I wait for internet connectivity again after moving into my new apartment), is so that new “autists to the community” can just use that list of people to know who to block and report on FB. They don’t have to think for themselves, just follow that list of names blindly. The page uses status updates to list each name, individually, and their alleged crimes. No links to where these quotes that are used exist on the page, so one cannot verify if that individual even made the comment ascribed to them. Some have said “Yes, that’s what I said to you after you did XYZ” while commenting on the statuses with their names. Others have said “That was taken out of context” and so on. Some outright deny the verbiage quoted. The most appalling part? A boy with autism saw the page (perhaps from seeing it in his FB newsfeed because his mother commented on the page in defense of herself) and commented on the same status, in defense of his mother. He was clearly a child based on his profile. All one had to do was look. However, because he defended his mother, he was named on this so-called blacklist. That child, at the time of this writing, was scheduled for surgery this morning. I hope all went well and that he will have a speedy recovery. Instead of preparing for the upcoming surgery and getting done all those little and big to-do things, the mother was targeted and had to defend herself and her son.

She had politely privately messaged someone she thought to be involved with this list. She did not outright accuse him, but she asked that if he knew who was controlling the page, if he could please remove HER SON’S name and that he’s a minor. The person replied with vulgarities I will not repeat. While a screen shot of this private message exists and was shared by the mother, I will not be posting it. One can find it in the WrongPlanet.net Facebook group (it’s a public group and you do not need to be a member to see the “wall” there). It took days before the child’s name was finally removed, either Sunday night or Monday morning. To say that those who were “blacklisted” were outraged is an understatement.

It’s strange how varied the persons are. Some represent parents whose children have autism. Some of those parents desire cures for their children’s medical (co-morbid) issues. Some of those parents desire cures for their children’s autism, period. Some are parents and proud members of the neurodiversity group who do not desire a cure, or in some cases, treatments as they are known traditionally. Some of those listed believe autism is genetic. Some believe autism is caused by vaccinations. Some say they don’t know and don’t care what caused their child’s autism. Some of the individuals listed are autistic themselves. And yet, as varied as their stances are, they all are accused of being “against autistics” and that they “bully autistics,” deserving of banning from Facebook, blocked and reported.

Some of the names on this list are unknown to me. Some of them are very well known. Some of them, I really just do not like personally and have had run-ins with them. And while in one case, I believe the person bullied me, I do not believe it was because of my autism. It had nothing to do with that (in fact, I don’t think the woman even believes me when I say I have autism). We all, as I was named there as well, stand also accused of being a part of some “cybermob” controlled by one woman, Lin Wessels, who is a parent of an autistic child and is very vocal about wanting a cure for her child. At the time I saw that my name was listed and that I was a member of her mob, I wrote that I did not even think Lin W. liked me, never mind controlled me in her “mob.” She since commented that she values what I have to say, at the least. I do appreciate her kind words. But she and I, along with others, have had our share of some heated debates! To think that we all belong to HER cybermob is somewhat amusing to me. If the person had only stopped there, I think I might not have been as outraged as I was when I saw that child’s name go up. Although, I might certainly have since they (creators of the page) also plan to disseminate this page to unsuspecting autistic community members which is outrageous enough.

David Wilde, an autistic blogger who blogs about autism and related issues, has said that one must ignore bullies, even in light of the International Autism “Blacklist” page on Facebook. He feels that if we even mention the mere name of this page, we are giving power to the bullies and giving them what they want: attention. I agree about 99% of the time with this approach to bullies.

I wrote in Wrongplanet.net’s forum group on Facebook on Sunday. The following is what I wrote about whether or not one should speak out against this page in response to a post asking why certain, more well-known, autism advocates had not spoken publically about this page, denouncing it.

“… I have gathered that this is the issue at hand: whether to report what we find offensive quietly and move on so as not to encourage the poor behavior OR to become more vocal about this page, in this specific case.

Normally, 99% of the time, I advocate ignoring the ignorance. Like a child in a store that whines and throws a fit over a desired toy, if a parent ignores the behavior, and holds firm to their stance, the child will learn that that behavior isn’t going to work. Sometimes in the case of bullies or harassers, that works with them too. Sure, they may move on to other targets but sometimes they’re like the child who learns that that behavior is NEVER a good thing and stops it all together. But either way, the lesson in the moment is learned: I cannot be bullied into doing what you want. Sure, they may kick up a bit more in the hopes of wearing you down, just like that child in the store, but eventually the message is received.

However, there is that 1% of the time where being silent won’t work. You have to become more vocal and state the obvious: this is not tolerable behavior and will not be accepted. It has to be pointed out that way sometimes.

I strongly feel in the case of this International Blacklist, this is the time for more vocal outrage and stance taking by the advocates in this community. Why?

Because this “blacklist” is being disseminated to “new autists joining the community” according to the latest description, and this is so they don’t have to use their critical thinking skills and decide for themselves, based on their own observations and interactions with the persons listed, to decide whether or not to ban/block them on their FB account or elsewhere. [edit: that was the stated purpose of the list, so that others did not have to “worry about” these things and didn’t have to think for themselves about it; I didn’t say that, they did.]

I would like to think that every person, autistic or not, have these critical thinking skills; sadly, I’ve seen for myself that not everyone does. It is for THOSE individuals who would come across this list and blindly follow it that I feel more information should be given on this issue to let those folks know that this “blacklist” is not what it appears to be and they should follow their own path of thoughts to decide who to block or not.

And it needs to be said somewhere else besides FB too. Whether or not [it should be] those advocates listed in the original post that started this question is up for debate. Perhaps they don’t know about this list yet and that’s why they have not spoken up? Some of these advocates (not specifically of those listed there) that are more popular do not actually pay attention to their FB accounts–they use it for marketing purposes only for their books, or websites, or organizations, etc. So, it is possible that they have not spoken up or out either for or against the list because they do not know of its existence.

So, in short (or long!), I’m going to do MY part in whatever way I can to get the word out that this list is not to be blindly followed. That most of those listed I have seen and observed personally and know that they are not bullies of autistic people–even if I disagree with them on their opinions about what causes autism, whether or not autism itself should be cured, or what have you. None of THAT matters because all of us are on different sides of these issues and still wind up on the same list. I have noticed a pattern to those names: perceived enemies of Zoey Roberts and the friends of those perceived enemies. I found it fascinating that Emily Titon was listed, shortly after telling ZR that the list is only going to cause problems, even though ZR liked that comment and was saying on her own wall that she was not the creator of the list. I know she didn’t create it– Connor L. said he did. But I strongly suspect she’s influencing who IS put on that list. It’s just too coincidental that Connor L said (I believe in THIS Group) that HE created this list that Zoey spread around–so she’s involved–to what degree? I can only speculate. [edit: I will also note here that Emily Titon is not the type of individual to get involved in drama of any sort, nor does she really participate in groups on Facebook, either. She may get added to a few by her friends, and she may even participate a time or two but usually leaves these groups as the types of debates often held in them are perhaps too emotional for her tastes. She argues passionately, but logically and unemotionally. That was also true of the comment she left for ZR.]

I hope [Zoey] learns her lesson here as she’s quickly losing friends through her paranoia. I strongly suspect she needs professional help beyond what any of us can give her and I wish her the best in achieving good mental and physical health and stops this destructive cycle she’s in. It does nothing for the autism community, online or offline and leaves a bad taste in someone’s mouth and we already have enough of a stigma attached to autism that we don’t need any more.

those are my thoughts on the subject. ”

Someone said I might be insulting when I insinuate that there are autistic people who cannot think for themselves. I did not intend to offend with that comment, but was speaking honestly. I was thinking about my own youngest son who will one day grow up and become more active on Facebook. What if that list, or that type of list, is still out there? He would blindly follow it as he does lack those critical thinking skills and sadly, he is not the only autistic individual I have seen this in. That is not a judgment on those autistics, but on those who would take advantage of that situation to misguide, misinform and deceive the autistic individuals.

And to show you that I’m not wrong, here is a clip I took from a wall of a similar page:

Now, this screen shot came from a second page called “The REAL Autism Community Blacklist”. I was attempting to explain to the creators of THAT page, that they are no better than the first one. They were simply listing the suspects of who created the first page. They said no one would be listed without “proof” of bullying, and be reviewed by the “committee.” Yes, I realize the irony of my statement above that coincides with my usage of screen shots as “proof” here. I’m leaving the person’s name up—not so she’s harassed—but so that it might be possible for others to verify that my proof is correct (by finding it on the second page). And, someone liked her comment. Now, granted she’s not blindly following the “bad” list—but it still shows, she is following a list blindly. She may know the creators of this second list and trust them wholeheartedly (she may even be the creator—I do not know) but it still shows that there is always someone (or two if you count the person who liked the comment) who will follow blindly. THIS is the EXACT reason I wanted the first page taken down. Not a judgment against Jenn Kaplan, who for whatever reasons has decided to follow the list, but against those who would even create such a list, regardless of who is on that list.

I implored the “committee” of this second page, aka the REAL one, to please reconsider what they were doing and take down the page themselves. The response? “Nope.” So be it.

I also implore that the first page, the one that started it all, to the ones who created this nightmare, to please remove the WHOLE PAGE. While I was happy to see a minor’s name removed, I would like to see the entire list disappear. Why? Because the purpose of the page goes against Facebook’s terms of service, it borders criminality, and lots of us may have a good civil case here. And some of us have the means with which to file one! Secondly, because the purpose of the page is actually to bully and harass individuals the creator/influencer of the page just perceives as enemies. I believe this person to be Zoey Roberts. Why?

Screen shot:

Please note that there she is, stating who is “another troublemaker” to be added to the “list.” Connor Lamphard tells her that he has had problems at the “list” with the same person (notably after this person’s name was added to the list). Zoey informs him that she “hangs out with lin wessels” and so on. That is exactly what is put up on this list about this person.  And yet, on this same thread, there she is telling someone else that “the others still want war.” No, Zoey, we didn’t. YOU took us to battle—we will win this ‘war’ you’re trying to wage against us. It certainly appears to me from the above screenshot that Zoey Roberts and Connor Lamphard are working together to monitor and maintain that blacklist page.

In nearly the same time frame, this screen post from another area of Facebook (the shot was captured later, after the above one was, so the “timestamp” does not show how close together or far apart these posts were made with any accuracy):

Now, isn’t that funny? She LIES to her followers. These are all taken from public places and can be found on Facebook easily enough, by going to Zoey Robert’s wall and looking at her “Recent Activity” and status updates. Of course, I bet when this gets published, she will see this and delete them. However, that’s okay because there have been HUNDREDS of individuals who have seen these posts now. Too late to hide. The game is up.

There are several more screenshots that could be shared but what would be the point? The point is made already. Zoey Roberts is not to be trusted at this time. She is lying to folks about her involvement with the “blacklist” of well-respected members of the autism community who are listed simply because they pissed her off. Their names appear, usually within minutes, of an “altercation” or “interaction” of some sort with Zoey Roberts where if someone does not blindly agree with her, they end up on the blacklist.

So while I think Zoey is trying to say above that someone is framing her, we can see clearly a few things by the previous screen shot: she knows who created the list, who maintains the page and she is directly informing him of who to post on there.

The other, and certainly most important, points of my blog post is to inform others of the existence of this page so that they can 1) warn others of its existence and true purpose 2) inform people of the true purpose behind this page, 3) ask others to report the page if they feel as outraged as I do about its existence and 4) I just really hate odd numbers in list form particularly.

 

And those are my words…

Since FB won’t work…

I know this post will automatically go to my FB wall. So, I will post here.

 

I cannot go anywhere on FB except my newsfeed. I cannot post a status update. I cannot move off the newsfeed onto my profile, into my messages, or into any groups. Effectively speaking, FB is broken. Hubby tried accessing HIS FB account from his computer and got the message that connection to server could not be made. But all other connections to other websites are just fine and in working order. It does not matter which browser I use, either. I know others who have similar problems right now and ever since I got the changes/update about a month ago (I was one of the first, yay!) it has not worked properly. I’m afraid I may have to just forgo FB altogether.

If you need to reach me, you can email me at heatherbabes@gmail.com or leave a comment here or find me on Google+ as Heather E. Johnson. (I originally set up my gmail account before my marriage to Jerry and hence the different name; not sure how to change it now).

So, there ya have it. FB is broken.

Zoey Roberts: Continued…

Update 09-12-2011

Last night, after I posted this blog, about an hour or so later, several individuals that are mutual friends between myself and Zoey messaged me to let me know that Zoey wanted back in the group she had left voluntarily in protest of me and another admin “being too bossy.” I had told her not to flood the group with multiple postings and to keep it to one thread—a rule for ALL members of the group. One or two threads a day is not that bad. 25 posts of whining? I don’t want to have to scroll through that to get the other members who may have something THEY have a right to express. And they don’t want that either. This rule was made up and expressed with permission by the original creator of the group who was so terrified (I think of ALL of us at the moment) that she couldn’t post in her own group! So, I reminded Zoey of the rule and deleted the majority of her other postings and kept the one that had the most comments on it (the others had no comments). I reminded her of this rule twice, at least, yesterday. And the admins and I are currently writing a document with said rules to be added to the group’s documents file so that all will know what they are when they enter the group.

As an admin, if someone joins this group that I just do not like personally, I will just make sure I apply the rules fairly and objectively. If I’m having a current argument (not to be confused with debate) with them, I ask another moderator to step in if possible, just to make sure it all stays fair and aboveboard. However, on this occasion the other moderators were afraid to speak up. So, I did. And that’s why Zoey left the group in protest. Once I had spoken up, another gained courage (mob mentality?) to speak up and remind Zoey this was a bully free zone and there were members there who felt they were being bullied. Granted, some felt Zoey was not being a bully. I’ll let YOU decide.

We admins were messaging about what the group rules should be and what I should include in that document when Zoey requested that she be allowed to rejoin the group. She had told them she wanted to message me but couldn’t. This is because I have my settings set so that only “friends” on my Facebook account can message me. Do you know how disconcerting it is to get a message from some random guy wanting to have “hot chat”? Ick. So I have set it that way. I can message other people who are not my friends, but they cannot initiate a message with me if they are not on my friends list. Since Zoey defriended me because she felt I was a spy for Yomama’s blog, she couldn’t message me anymore. I told the other admins, sounds like she wants to apologize. So, let her back in. We have to forgive others as we want to be forgiven. So, they approved her request to rejoin. I should have known better!

She did come in the group. She did say “sorry”; however, it didn’t stop there. It was “I’m sorry but” which is not the same as a true apology. It’s a passive-aggressive action to get a foot in the door to stir up more trouble and drama. I’m posting screen shots with permission from the group’s owners. The other screen shots come from public forums and such.  I’ll add my own thoughts as we go. It’s in multiple parts. And Yomama, I get it now! It isn’t so much a blog to make fun of Zoey and waste time but to warn others. I get it now.

Sadly, as I was writing this update, I went to obtain a screen shot or “snip” of the apology thread and it has vanished. No moderator deleted it so I must conclude that Zoey did before she left to prevent this very thing. That’s fine. On that thread, I did tell her that I was sharing screen shots on MY OWN BLOG—not spying for anyone else, thank you—and she was upset because I had blanked out others’ names and images but not hers (or mine either!). That is because they were not a party to the conversation (we were waving hi at each other for cripes sake) and had no bearing on the situation at hand. Their comments were completely irrelevant and quite frankly, it pissed me off that she started trying to throw other people under the bus! Her so-called friends! This post was about Zoey—not them. So why would I include their names/images associated with their FB accounts? Duh.

So, basically she came into the group and “apologized”. She said, “I’m sorry” and then continued to justify her behavior. Yomama’s blog has plenty of screen shots and I’m sure one of them has such an example as it is a classic maneuver for Zoey to do. She’s sorry but 1) she continues to do it and 2) she justifies the behavior she’s allegedly apologizing for. I want to point out now that if one is truly sorry for their behavior, they do not justify or say they were right for acting that way. No, they say they are sorry and maybe add that which CLARIFIES or EXPLAINS why they did what they did. They do not JUSTIFY the behavior and say they were RIGHT to behave that way if they are sorry for it. It’s mutually exclusive.

She also whined that “everybody” has been telling her to get help lately (in the form of therapy) and informed us all she is already seeing a therapist for talk therapy. What I would suggest is more than just talk therapy, something that includes cognitive behavioral elements. But that’s between her and her therapist. I did suggest to her that if everyone is STILL telling her to get help and she’s already getting help and HAS been getting help all this time, perhaps she needs a new therapist cause this one ain’t working. She made the comment that all these “get help” comments are bordering on harassment because it’s so much.

Ready for this? Not too much longer down thread Zoey then says, to me, “I don’t see anyone else complaining about my behavior.” *facepalm*

 

And included on this thread was another moderator telling her that her behavior was out of line and terrifying the third moderator.

 

But apparently I’m the only one telling her that her behavior is beyond the pale?

*shakes my head*

 

Also, too, she made the statement she had been friends with the third moderator longer than anyone else has. What was the point of that? I still haven’t figured it out. I mean, I can be friends with said person. And said person can be friends with Zoey. Why should she have to choose between the two of us? She doesn’t. She’s allowed to be friends with whomever she chooses. That’s HER choice. And no one should try to intimidate her into making those choices match up with what they desire. That’s… bullying!

I have come to the conclusion the problem is this: Everyone loves me and hates her at the moment? I think that is her perception, mind you, not necessarily the truth. You see, this group made me moderator/admin of the group after Zoey specifically asked to admin their group and was denied. I’m going to be completely honest here because I know of no other way to be. They didn’t want Zoey to “take over” their group as she has in other groups most recently. Zoey is an admin of many groups; some she has created herself and some others have made her admins of. That’s fine. Why does she HAVE to be an admin of another? So they told her they wanted it to be a partnership of just those two as the most diplomatic way of explaining it to Zoey without “criticizing” her. It was a true statement too, at the time.

After that, they realized as original admins of the group, it is possible FB would glitch up and remove them as admins and the group would become a free for all in who would be in control—much like how Zoey was able to “take over,” by force in a sense, of a peaceful autism group on FB. In that group, she asked to be admin and was denied. Then wham-o, she suddenly has the ability to make herself an admin and the actual creator of the group was no longer an admin. Still not quite sure what caused that and so the administrators/creators of THIS group was afraid it could happen to them. They wanted someone they could trust to turn control back over to them if FB happened to boot them out of being admins. The luck of having 3 admins seems to stop that from happening for whatever reasons. They know me, they trust me and so they made me admin. I would not ever take over control of someone’s group nor would I speak on behalf of them without their prior knowledge and consent. The same cannot be said of Zoey Roberts.

So, she got butt hurt. Then, all of a sudden, she starts spreading the rumor on FB that I’m a spy. I swear I had at least 20 to 40 messages in my inbox when I finally got online this weekend about her attempts at defaming me. Now, she did clarify to folks she did not have “proof” that I was, just a hunch. But she said she didn’t HAVE proof—not that it didn’t EXIST—and she said that she would GET the proof soon. Of course, she hasn’t yet because no such proof exists. Because I am not Yomama’s spy!

On this missing apology thread, she asked me how I knew her comment about bullies and spies was directed towards me and not someone else as it was GENERAL in nature. One, because I’m trained to recognize bullshit? Okay, Okay, mostly because people had messaged me already and informed me of what she was doing. I explained that to her. Again.

Then she stated it HAD to be one of her friends because some of these posts are coming off her wall. I tried AGAIN unsuccessfully to explain to her that one does not have to be a friend to get a screen shot of a posting on her wall because she does not have her wall set to private but to public. No one is doing anything illegal when they screen capture something that is public and on the internet. No one is doing anything illegal when publishing said screen captures when these are public comments in a public place online, even if it is someone’s personal profile page. If you don’t want someone to see it, use it, or republish it, copyright it or don’t put it up.

As for the ETHICS of that type of situation? Well, she *wants* to be a public figure. So, she is one. She has to take her lumps just like the rest of us. Sorry, chica. Those that comment on her postings are generally speaking NOT public figures but private citizens who get afforded more privacy than she does. She’s like a celebrity that complains of the paparazzi taking pictures when they’re out grocery shopping. There’s a price one pays for fame. Or infamy.

However, I want to get to the screen shots. I love ‘em! I joined a new group today that has been around for quite a while and it is a public group. It is not closed nor does anyone in there have an expectation of privacy. This group is the FB group of WrongPlanet.com. There are several members of that group that I have had run-ins with in the past that are also currently having run-ins with Zoey. This is funny, to me, on MULTIPLE levels. It’s not a ha-ha funny, either.

 

Now, Elyse Bruce is a public figure of some note herself. She also is the co-founder of Midnight In Chicago and regular readers (and friends of mine) will remember what has transpired over the past two years between myself and that ‘initiative’. This is not about that.  This thread came from someone asking about if someone had been bullied and how it affects them and that type of thing. Elyse made a nice reply to the post as an active member would. Then Zoey Roberts responded to the original post. She almost did as well as Elyse in her reply except for one thing. That everything past “I’ve been bullied and stalked to [sic]” was directed at Elyse. You see, at MIC’s blog, they have posted screen shots of Zoey and her … misbehavior… as well. It’s not just Yomama and it’s not just me. However, we all have a common purpose now: to warn others.

Elyse, not being a stupid woman, replies to Zoey knowing full well who Zoey is talking about. She very politely requested that Zoey not stalk her and respond in groups/posts that Elyse is in. I disagree with Elyse here somewhat: Zoey has every right to join a public group and it may not have been, initially, for the sole purpose of “stalking” Elyse. But I can certainly see why Elyse responded the way she did as it was obvious to me—an autistic—that Elyse was the person Zoey was originally referencing. However, since several people has been “airing her dirty laundry” lately, the last post by Zoey could be about any number of people.

Next screen shot, please!

Zoey published an additional two comments back-to-back after the last one from the previous screen shot. Again, not mentioning any names but it is clear who she is referencing—at least to me. One person in this thread informs Zoey that in another group there is 292 comments about Zoey and many of them are not in favor of Zoey. This is the group Zoey did a hostile takeover of. I’m a member and current admin of said group. The other admins of the group tried to keep that thread to a “warning” thread rather than a “Bash Zoey” thread at least and allowed the members there who felt harmed by Zoey and her behavior an outlet to vent. We respected their right to express themselves. Now, in that SAME thread this person mentions to Zoey, I defended Zoey quite a number of times by explaining but not justifying some of her behaviors. You see, I had thought if people could understand where Zoey was coming from, we could all band together and TEACH Zoey what’s wrong with what she’s been doing, why it’s causing harm and why it IS her problem if she’s going around causing said harm. Like the very parental type of people she claims she wishes we were. Aha! Therein lays the problem. She says she wishes we were like PARENTS. Well, when we correct our children, we expect them to 1) listen to us 2) respect that we have more experience in this area and know what we are talking about 3) correct their behavior so it doesn’t happen again to the best of their ability and 4) appreciate that we cared enough about them to bother with correcting (criticizing) them in the first place. Zoey doesn’t act that way, though. No, if you criticize her, you’re a bully trying to oppress her freedom of speech!

 

Next screen shot:

 

And here we have Zoey rewriting history. She adds another comment to say that she chose to walk away rather than get angry (has that EVER really happened?). No mention made of how she tried to take over the group from the creator. No mention of how she told said creator to go jump off a bridge and commit suicide. No mention of how any of that happened. No mention of how the reason she finally gave back control was because of her messages to and from me where we conversed about what she was doing and why it was the wrong way to go to prove she had “changed” from the way Yomama was portraying her! NONE of that was mentioned! Yes, we did derail the thread quite a bit with other topics. Autistic people tend to talk in tangents and may or may not get back to the original point given time.

 

Or at least this autistic does that.

 

But in this case, that was mostly done on purpose—I think because none of us felt good about a Bash Zoey thread, no matter how much one might agree with the views expressed in it. We’re just not that kind of people.

And she talks about people mudslinging with these screen shots. Mind you, these are CURRENT, only DAYS and some cases HOURS old. This is not PAST behavior. This is CURRENT EVENTS.

Next screen shot please…

 

Now, this other person in the comments is a mutual friend of mine. I have blocked out her name as it really isn’t relevant. Her comment is the last one in the previous screen shot and Elyse asked for clarification, fearing this was perhaps a “Zoeyite” come to give support to Zoey. Zoey preemptively tells this person not to mention the blog by name, which rightfully upsets Elyse. Elyse had every right to ask her question. Even if she did not fear that it was HER blog that was about to be mentioned by name, she may have been genuinely curious about which blog this person was talking about. So, she asks that Zoey not address anything Elyse says in this group or thread, again. Zoey responds with “we want to keep this thread respectable guys.” Again, Elyse reminds Zoey that her own behavior is PART of the problem. Zoey continues to support our mutual friend with a dig at the end towards general “bullies.”

The one comment I want to highlight here is this: “I support u ___ and please don’t b afraid either” [sic]. I’ve blanked out said person’s name. To me? A person who has trouble catching on to social cues? I don’t know but to me that looks like a call for this said person to speak up MORE. As in, I’m here, I got your back, say what I want you to say so I don’t have to and have it used against me later. It’s as if, to me, she wants THIS PERSON to do her dirty work for her. I could be wrong. What do you think?

 

Now, moving back to the group I was made an administrator of and that made Zoey mad. While I do not have snips of that apology thread, she had made another post that I had allowed to stay. Here is the first part of that. (Ya know, this snipping and commenting could become addictive with me. I hope not!)

 

Now, the other person who initially posted to this is a kind-hearted mother of an autistic child that is a mutual friend of ours. I have a feeling, when she was posting her comments, she had not a clue of what had been transpiring “behind the scenes” so to speak. So, moving on.

Now, I was talking about the group that she had done a takeover of. They DID ban her from that group. Once the creator got control back—Zoey had left and the creator then banned Zoey from returning. At the time of this writing, she is the only person who is actually banned from returning to that group. When you tell the creator of a group to commit suicide, I think they have a right to ban you when you then get added back (or maybe she had never left/got kicked out) to the group and try and take it over.

We will soon see that she was not talking about the same group, but another one with a similar name, where apparently, she had some trouble. Who knew? But ya know, no one else is complaining about her behavior!

To show that this is all one continuous thread, when I did the snips this time, I included the previous ending comment of the last snip.

 

At the time, I had no clue who had created the second “peaceful” group she was talking about (and she spelled the person’s screen name wrong anyway). However, NOW that I DO recall which group she was talking about, I missed the drama of it all when it transpired because, at the time it happened, I was NOT a member of the group. I had left myself. I have since returned. I forget why I had left but I know I was upset with someone in there and so chose to leave.  Whatever the case, I was not a member of that group, at that time, that I KNOW of. I do not recall ANY time where Zoey was attacked in a thread “for absolutely no reason.” Therefore, it had to have occurred while I was not a member. If she’s not rewriting history, that is.

Note that there are multiple reminders not to flood the group. This is because while we were discussing this, she continued to make more posts in support of herself and her behavior. This is after she apologized for said behavior.

She forgot to “like” her comment about hating drama! I started liking my own comments to show it doesn’t matter and doesn’t prove a dang thing to like your own comments. Those who also liked my comments were the other moderators.

I still have no idea why she brought up the creators of the group. I still don’t “get” it. Maybe a reader can fill me in? But I do know it terrified them as they felt it was her labeling them as targets. I don’t blame them for feeling that way and I will support those best I can if they do become her target next. I really hope they don’t.

The other adult that posted is autistic herself. She has been bullied. She had come to this group to seek refuge and to discuss those types of issues. However, at the end of her comment she writes “that’s why I tell Zoey…” which makes me wonder if Zoey didn’t ask this person to “defend” her in this group. Then Zoey claims to hate drama. Yet, she is the one who created it THIS TIME by suggesting I am something I am not, doing it behind my back, without the courtesy of saying it DIRECTLY and EXPLICITLY to my face, knowing I have NEVER, EVER gotten angry with her any time during our conversations nor have I ever put her down. All I did was suggest she change her behavior if she doesn’t like what she sees in the screen shots. Oh, and became a moderator of a group she wanted to control.

Some more whining… 

 

Oh, let me clear this up for you Zoey! I wouldn’t want you to operate under any misunderstanding. It is not your OPINIONS that I have a problem with. It is not your OPINIONS that hurt my feelings. It was your BEHAVIOR that did it. And when I criticized you, it was to HELP you as a parent would help their child when they see their child making a mistake. It was not because you’re “vocal abt opinions” [sic] at all. As I told you on the thread you deleted, it is your opinions and sharing of them that I liked! I liked your postings of videos and articles and often shared them onto my own wall and in groups!  What I did not like was you starting an unfounded rumor because of a lack of logical thinking on your part. It was you causing drama in a drama-free, bully-free zone. It was your deciding to try and bully that group into making me NOT an admin and YOU an admin. THAT is what I had a problem with! Certainly not your opinions on autism as we agree about much on that score.

Don’t know what I mean by intimidation to get me removed? I submit THESE screen shots as proof.

And this one after she had come back to “apologize” for the above and other behavior, such as suggesting I was a spy.

 

No, Zoey, you don’t. But we don’t like to be controlled either. And that is exactly what the problem was: *I* wouldn’t let you bully your way into control of this group hence your “protest” of me as admin. I’m a bit concerned because the first person who posted in response to this was added to the group right after Zoey left the first time, and then asked to be my “pen pal” after friend requesting me. I’m not sure we’re in the same lane on this one.

When someone suggests that what you are doing is hurting them, it is not trying to control you. It may be judgmental, of the behavior, but not you. It is not trying to change “who you are” but trying to change how you express yourself so that it does no harm. You see, your right to express yourself extends to the tip of my nose, so to speak. You can do so as long as you do not harm others. This is why one cannot yell “fire” in a crowded theater, as it will harm others, if there is no fire even though we have free speech in my country. You can extend your arm as far out as you want to, so long as it doesn’t touch me. Then it becomes assault. That is the point you fail to understand time and time again and that is why we so often repeat ourselves.

It is NOT okay to go around hurting other people’s feeling, then saying “Oh that’s your problem you have feelings” and then in the next breath say “I have feelings too.” If you want others to respect your feelings, try offering respect in exchange! I have spent countless time trying to get you to understand that in direct and indirect ways. You say you TRY to be polite and respectful and at the same time accuse me of something *I* tell you is not true nor do you have any basis for believing it. And about 30 or so other people tell you it isn’t true. Do you need a statement from Yomama like he/she had to make regarding Elyse Bruce??

Examples of apology by Zoey Roberts:

This is another example of a “not really sorry” moment ala Zoey Roberts. She has VALID reasons for saying what she says. And if you cannot understand her latter half, it is that she can’t help it if people take offense to her general opinions when it’s not about their personal issues, thank you. Well, Zoey, the problem is, it WAS about their personal issues!

                    

She posted this in a group, I think, and someone responded. You might have seen several mentions of her “9/11” opinions. She started out with the political side of this and how her PERSONAL RIGHTS have been infringed upon by the Patriot Act following the events of 9/11. Now, I won’t get into MY views on this subject, but suffice to say, if she had kept it there, we wouldn’t be having this problem necessarily. As far as I know, she is a Canadian citizen. I do not know how the Patriot Act affects her as I thought that was an American only thing. I could be wrong! So, as I said, not going to debate that part.

However, she DID say (although I don’t have a capture of it) that those who are talking about 9/11 and getting upset should “move on” and “get over it” and so forth so that she can have her personal rights back. Again, I don’t know what rights she has lost as a result of 9/11 but there ya go. She, of course, cannot see how that can be insensitive and defends her right to express it. That’s fine, she does have a right to express it as far as I’m concerned. But why whine when other people express THEIR disapproval of her opinion? That’s what she did with those posts on Twitter! (The screen shot of that is labeled “some more whining” in this update.)

 

I really do wish I had the capture of the apology thread because I believe it was on that one where I pointed out to her that she has a set of rules for everyone else to abide, but a different set for herself when concerning the same things. Now this manner of thinking is a symptom of a lot of diagnoses. The majority who exhibit this symptom (everyone else has to obey these rules but ME) are bipolar—not Asperger’s. I am offering this as merely an observation, not a judgment and certainly not a diagnosis of Zoey Roberts. I DO happen to know from reading various studies that autism and bipolar can be often comorbid. For my eldest son, he has both, too. He also used to think this way. He is now 13 and we’ve worked on that. He checks himself before passing judgment on others… he asks, Do *I* follow this rule/law? Why do I expect them to? And so on. I’m really proud of the progress he’s made in this area! He’s not there yet all the way and at times has trouble in this area, but he’s progressed further than Zoey has. It’s a shame no one caught on to it sooner to help her sooner so it wouldn’t be this big of a problem.

And it is this thinking, this misconception, which is at the heart of all her problems online. Yes, it can be harder to socialize for some online than it is face-to-face. For me, personally, I do a lot better. Because we’re on a more even field where there isn’t any body language to interpret and so on. So all those online communicating are Just. Like. Me. and have to rely solely on what someone SAYS to understand what they mean. Let’s look at her most recent problems to understand why this is the cause of all her problems.

She calls someone a bully if they call her names. She can call them bitches and tell them to commit suicide, because she’s having an “off day” or “negative day.” But she does not afford the others the same chance to just have an “off day.” They don’t have to have autism in order to have an “off” day and do something they wish they hadn’t. But she doesn’t excuse their behavior, only hers.

She complains that some bloggers have taken to “naming names” and yet she has posted HUNDREDS of people’s name that should be reported, or banned, or removed from something or other. We’re not even calling for her removal! We’re just talking about her! She calls it illegal! But yet, she will name names when it suits her just fine which isn’t illegal, of course, for ZOEY to do.

She says she does not want to be controlled. And yet, she very much wants to control all that is in her realm and all those who are her friends. But when said friends try to HELP her understand something, she calls them controlling. When she does it, it’s because she only wanted to be helpful and was rejected!

When she expresses opinions that others find objectionable, she cries foul that they would voice their objections. Yet, when she finds something objectionable, she feels free to say so.

 

You see the pattern? I do. I hope one day, she does too!

One final screen shot. Sorry it’s taken me so long to post this but it was requested by Midnight In Chicago some time ago and it has taken some time to post it. I don’t know how to post pics to a comment field on a blog, so this will have to suffice. I had a delay in posting it because at the time THIS thing was going on (about Zoey Roberts believing Elyse Bruce was the same person as YoMama) I was going through some personal issues and had to relocate—lots of drama and stuff. But I found it!

You see, Zoey had mentioned Yomama and linked to the blog Yomama writes repeatedly on her wall and requesting info on WHO Yomama might just be. At the time, I commented that the person might be found out by going to the MIC blog, where last year(?) someone by the “same name” had commented there and EB or someone at MIC, had outted that person as a “fake” name. At the time I said that to Zoey, I let her know THEN that I COULD be mistaken as my memory from that long ago could be faulty. I was suggesting that, to me, I could see why she thought the connection was there IF the same person was making comment on the MIC blog.

Here is Zoey again asking who it is, about a day or so later (?), and I correct myself because I could not find the original post. She floods her own wall (which is her right to do of course) and so to try and find “older posts” was just too hard when I realized my mistake. So, I posted my correction to her on this post instead.

 

Now, I have had this screen shot for some time, but as I said, it’s taken me awhile to share it because I have had some issues going on that took precedence. However, from past experience with Elyse Bruce and her group, I knew it would be an issue and so made sure to “snip” it. However, I was new to that snipping thing (and really, still am!) so I’m experimenting now with the best way to do them. So, this was my first one really and so, there’s nothing around it to give it context. Sorry about that! I didn’t realize how that “Snipping Tool” in Windows really worked at the time. And since it’s been a REALLY long time ago now, I doubt I could find it on her wall again. But, I hope this suffices. If not, don’t know what to say!

 

I just wish EVERYONE could feel free to post under their own names. Sure, I recognize the need for some to remain anonymous and all but it sure would make things less complicated. And c’mon, seeing the name YoVillian a few times last year and “Yomama” this year, can anyone really blame someone with a traumatic brain injury for getting it confused?

9/14/2011: I had some trouble with accessing internet to post this sooner. As I was going to The Rants of Zoey (Yomama’s blog), to obtain the link, Blogger says the blog is no longer there.

Zoey Roberts: A rewrite

So, I had this big, huge blog post written to sorta kinda defend Zoey Roberts. I wanted to explain her perspective as I felt I had a great grasp of the situation and how it comes about what she does and why she does it. Not to justify it—mind you—but to EXPLAIN where Yomama’s comments are erroneous as well as other commenters and detractors of Zoey’s. If you have no idea what I’m talking about, feel free to skip this whole post! It’s a long story and if I start explaining, this post will be much longer than is currently intended. Suffice it to say that Zoey Roberts is a self-labeled Autism Advocate who uses FB primarily and her own blog to raise awareness about autism couched in terms of her own opinions and beliefs about autism. She also creates FB groups and joins FB groups and that has caused a lot of drama for some reason or another. Sometimes it’s her; sometimes it’s someone else provoking her. Sometimes it’s her reactions to misconceptions about a conversation where she just THINKS someone is attacking her but they aren’t. I have already left many of HER groups because I do not approve of the way she admins them. They are her group and she has the right to admin them any way she wants and I have every right not to participate in them. And we remained friends even after that. Which is why what happened today so shocking!

 

You see, I was going to point out how much of what Yomama is upset with is actually a common manifestation of autism for some autistics, especially adult autistics who did not receive beneficial early intervention in social situations and so forth.  I was going to point out that we need to help Zoey understand when she is wrong and that she just really isn’t getting it and we need patience.

 

But ya know what? I’m not going to. Instead, I am going to grab a soda and drink when Zoey says “Spy”.

So, I went to my estranged husband’s house today for a day of family fun, and upon return to my hotel room, signed onto FB. Several friends had sent me inboxes (private messages on FB)—some had heard Zoey was messaging others about me being a spy. Apparently those who Zoey had messaged with mentioned it to them as they were now scared about what is going on with Zoey or me. You see, Zoey had asked for my help in discovering who Yomama is. I’m not a private investigator. I’m not in law enforcement. I can’t hack into anybody’s computer. She suggested an IP tracker. I tried my best to explain that only works if Yomama were to comment on Zoey’s blog. Or someone Zoey knows who might have an IP tracker. But I cannot use an IP tracker to trace YoMama’s IP address on her or his own blog (at that time, Yomama had not said that he was a he). We spent more time speculating who it might be or might not be. I denied several of her top suspects because I just couldn’t see those people wasting their time doing a blog about Zoey. Sorry, Yomama, I think taking Zoey’s screenshots and creating a blog about them *is* a time waster (says the girl who wastes her time with FB games, so yeah).

And that was the extent of it because, quite frankly, I didn’t know how else to help her. I gave her a name of a guy who might be able to help her that is a mutual friend of ours. He’s a computer geek and maybe he might help her and in the meantime, I kept my eyes open and tried to see how this was going to play out. I had to put my original blog post on hold as I was leaving my husband’s house and had no clue at the time where I was going to land up—some things DO take precedence over FB

Here’s what happened. Zoey feels because I never found out who Yomama is, and therefore didn’t help her, I must be Yomama’s spy. *facepalm*

I erroneously made a mistake in thinking that Yomama was YoVillan (similar name!) from last year on another person’s blog. I mentioned that on Zoey’s FB wall. Once I discovered my mistake, I did inform Zoey on a different post that I was, as I had feared and mentioned I might be wrong when I made the original comment, in error and it’s a different screen name. Of course it COULD be the same person, but I wouldn’t know, would I? No, because I am not his or her spy.

I did read the blog, of course, at Zoey’s request. And I have continued to view the posts there to keep an eye on things. It’s quite… weird to me. Now, I know a lot of people have been hurt by Zoey’s words and I even understand why Zoey wouldn’t want her words used against her. But I do think this obsession to find out WHO Yomama is has gone terribly awry for Zoey. She has accused at least six people in the last three days off her friends’ list that I know about, including myself. She has since defriended ME. She is going to lose ALL of her friends at this rate.

I think Zoey fails to understand one main point about Yomama’s blog. This is it: Zoey, you are a public figure. You tell people you are a “name” in the autism community online and are an “autism advocate”. You have a published website under your control and have made guest appearances on other people’s blogs. That makes you a public figure. Anything you say or do online in the open, on an unlocked wall of a friend, on your own public wall, in a public group (it can be “closed” or even “secret” but it’s still considered public as it’s shared with multiple people), can be discussed by others. Even if Yomama types on his or her blog that you are a pink elephant who eats hot dogs for breakfast, you can’t sue her or him for libel because you are a public figure and it’s very hard to wage legal battle for that. My suggestion is this: if you don’t want to be talked about, take yourself out of the public, similar to what I did. I still help people in my own ways, in private. I don’t need to brag about it to do it and I still get the same sense of satisfaction knowing that one more person’s life has been positively affected by me.

I disbanded AAFA (Advocates Against Fraud in Advocacy) and I have a feeling Zoey didn’t know that and thought I’d do an “investigation” on this person. Even if AAFA was not disbanded, I still wouldn’t do it as an AAFA case as that was NOT the type of cases we were to handle. It was about FRAUD—specifically where money or goods changed hands for services that were to be provided but were not by an advocate. Not that someone took and posted my own words type of thing. So, if that was the problem, sorry, Zoey.

 

I don’t think I’d be comfortable hacking someone else’s computer in this case either, to be honest, even if I DID know how. It’s easy to ignore a blog you don’t like: you just don’t go to that site. Period. Now, if you feel something is affecting your reputation and earning power, I’d suggest you consult an attorney on how best to proceed and I can bet it doesn’t involve posting a link (free advertising) to said blog all over the internet. The advice would most likely be to print a record of the blog posts and IGNORE it while the attorney handles the legal end. And that goes for obtaining IP addresses as well—those can be subpoenaed. I most likely would NOT have given Zoey the IP address, even if I had it, unless Zoey had an actual legal case against this person as I wouldn’t know what Zoey would do with that type of information and I would not want to be liable for that!

 

I did mention to a friend of mine that I think Zoey is ashamed of her behavior and words and that is why she is working so tirelessly to find out who Yomama is and is starting to accuse her own “Zoeyites” as Yomama calls them and other innocent people.  This friend suggested it’s more the “out of context” nature of the posts that is probably the problem. Perhaps. But I know this: if she didn’t say those things, no one could use them against her. When a similar thing happened to me—someone used my words out of context, against me—I apologized for how it came across to them and tried MY level best to explain it. Of course, it went off the deep end at that point and so I very rarely bother to explain it anymore as it just creates more animosity and so on. Another long story.

Whatever the reason this bothers Zoey so much, I hope she gets it resolved one way or another because she is going to lose friends over this. Accusing people without proof of being a spy, or being this or that person, isn’t nice. It can cause a lot of hurt feelings and unsettledness. AND if Zoey DOES lose a lot of friends, she’ll only HERSELF to blame for that—no one else.

 

You can say you’re not perfect, you can say you have this or that diagnosis, you can SAY a lot of things, but what you DO after you say “I’m sorry” means a whole lot more. Saw a TV show recently where a boy said “I’m sorry” and his dad asked “What does I’m sorry mean?” and the boy replied “Never doing again.” I liked that a lot because that IS what it means. If you are sorry for your behavior, you stop doing it. Zoey—stop. It doesn’t matter who YoMama is or isn’t. It doesn’t matter who is or isn’t sending her or him screen shots (she or he could be taking them themselves). The point is this: ignore. If you’re an awesome autism advocate and know you are doing your best for the community in your way—you don’t have to worry about what others say—you just do what you do.

And all of what you have to say just EXPLAINS a thing, it doesn’t EXCUSE it. So, if you are embarrassed about a behavior, stop doing it. Change. If you need help in changing, get that help. Before you’re alone and without friends.

And for the record, if you have any other things you think I might be, please ask me directly. Don’t go to our mutual friends and try to start something that way. You didn’t come directly to me. You did a very passive aggressive thing in the group–NOT the venue for this type of thing given that it’s a bully-free zone and about being a refuge for people who are scared, sensitive and afraid of being bullied. We’re not dumb. We’re not blind. You’re scaring a lot of your friends away and I offer this post to you as a suggestion for further self improvement for yourself before it really starts costing you.

 

A screen shot of the way Zoey approached me to ask me if I was a spy– not a direct question–a passive aggressive thing.

I'm a fair-minded person and is why I am an admin of many groups--I do not let personal squabbles get in the way. She could have just asked me directly.

 

What. A. Day.

So I haven’t been blogging much as one can tell. I tend to do some “micro blogging” on FB. I use my statuses and my ‘notes’ area to keep everyone in the loop at one time. I hate repeating myself despite how often I seem to do it!

In fact, I have been using FB almost exclusively forgetting to check my emails! It’s been over a week since I checked my email and there was over 200 of them. Most was junk I could just delete or archive to be read later. A lot were things I needed to be made aware of or take action for. For instance, I have been working with a team on autism-related things, for a particular website, with John LeSieur. I have not been as active as I was initially with that because all action items go to my email—which I had not bothered to log into for quite some time. Oops. I hope he does forgive me!

As many of you may know, I’ve also gotten behind on my school work. It’s not that challenging of assignments either. It’s just a simple matter of getting them done. Read and write. Not that hard for a hyperlexic individual for myself. I do have excuses…er, I mean reasons for this lapse. It’s been too freakin’ hot to focus! Seriously, a record consecutive days of 3-digit temperatures, which each day broke records itself. My feet and legs would swell and I’d *have* to lay down to put them up. And of course, I’d fall right asleep. As I had stopped taking my meds that give me “oomph” during the day to get crap done.

I had stopped taking my meds because my local pharmacy that I’ve been using for 3 years and 4 days as of this writing, informed me that I am not a customer there and they had no records on file for me for ANY of my medication. Say what? I know I wasn’t going crazy! I KNOW I fill all our meds at the Walmart pharmacy as that’s the location that’s most convenient for us. The only places I seem to go these days are Walmart, SuperCuts, doctor’s offices, and maybe the hospital. Having limited mobility and no way to get my wheelchair through my outer door to the outside limits quite a bit of what one can do. Not only if I did find a way to fit the chair through, I have no ramp to get it down to ground level and nothing to then get it into my van. So. We plan trips where J and I can go together so we can “tag team” the effort. Stop one, I go in and do whatever it needs doing. Stop two, he goes in. And on it goes until it’s all done and we go home completely worn out and barely able to bring in the groceries never mind putting them away.  However, lately J’s health has been declining and hasn’t been able to make trips with me; and with my agoraphobia, I’m not going by myself any time soon! LOL

And I don’t know WHAT I’m going to do when we actually physically live in two separate places either. I am assuming I’ll be more mobile because I’ll have a wheelchair accessible place that I can get in and out of. In fact, the place I’m hoping to get is just a mile from Walmart—I could ride my chair there and back easily! All I know is, I can’t wait to get out of THIS place. I keep thinking life is going to turn around magically and be all better if only I could live someplace else. I have a feeling that’s some faulty thinking—as in my health is going to be what it is no matter where I live—but hopefully I’ll be better able to cope somewhere else and that is closer to places I need to be or be able to get to.

So, today. What. A. Day. I woke up at a little after 4 a.m. Why so early? Well, we don’t have unlimited access to the internet. Everything takes “status” as we refer to it. You get so much kb or mb of bandwidth for use per day and everything you do—load a game on FB, check emails, check the weather, watch a video, download a song, etc—takes up bandwidth. Certain programs and games on my computer require bandwidth to play even though I’m not really “online” with it. This really bites. Hughes Net commercials really piss me off too. That’s our internet service provider and the only one that services our area. Call up AT&T and they use Hughes Net. Call up DIRECTV, Dish Network, or any other “satellite” provider—they use Hughes Net. So, we’re stuck. Now, between the hours of 1 a.m. and 6 a.m. CST, USA, is FREE time. Meaning, they do not dock you whatsoever for your usage during this time. This is also the time they suggested that my then 7 year old autistic son watch his videos because he had a hard time understanding that our internet access was limited and he could not watch his videos over and over again the way we used to. Of course, they also suggested we use their tool called a “status meter” that let us know the percentage of what we had left to use. Now, they count 24 hour periods, and it does not flip over at midnight. No, it flips over to new amount of status based on when it was last kicked in. You see, if you go over your daily allowance, you get “restricted.” This means you are now cruising the internet (if you don’t get 504 errors) at speeds SLOWER THAN DIAL UP! THIS is what pisses me off about Hughes Net’s commercials. The lady brags about how fast Hughes Net’s download time is: “You can download WHOLE ALBUMS in the time it takes you to download one song with dial up!” But what she DOES NOT brag about is the fact that if you DID download a whole album—you’d get restricted and be slower than molasses. So what are the options if you get “restricted”? Wait 24 hours—and not necessarily from the moment you got restricted. If you continued trying to download a file that put you over, for an example, when that download stops is when they start counting your 24 hours. If you’re lucky, that is.

Of course, there’s another option. You get one free monthly “token” to restore your service. For this family, that is usually used within the first four days of the month. I pay $79.99 a month for this service, mind you. Even if I paid their highest amount, $400-$500/mo, I’d only get 75 mb worth of bandwidth more per day. That’s like—loading up a game one time on FB. And pages that are ad-intensive are worse because those ads take bandwidth too—each time they refresh and/or reload. Although, I suppose I should be grateful to Hughest Net for teaching me all the ins and outs of bandwidth usage.  The other option is to PAY for a token. It’s $10 a token, or 3 for $25. Yes, we often purchase the 3-token deal because we go through about six or seven a month. I don’t think their meter works right to be honest with y’all because we can be at 86% status left of our total allotment and all of a sudden, minutes later, BAM! We’re restricted! So, our monthly internet bill  is usually somewhere in the $120-$150 range. Nice, huh?

 

Why did I get on this tangent again? I forget my point. I hate Hughes Net!

 

Oh yeah! To explain why I was up at 4 a.m.! So, yes I woke my children up 2 hours before necessary so they could have some “free” internet time to watch videos, download videos, etc. Maybe even play a game. Of course, they go to bed early, too to accommodate this. And since T and B went to bed super early last night, I figured they got themselves enough sleep to get through the day and woke them up at 4:30 a.m. (I needed coffee first). So, I got them up and they played on the computer until 6 a.m. when it was time to get ready for school for real. Their second day of school.

So, I got Bboy to get clean clothes to put on and I supervised him. We’ve been working on HIM putting on his clothes correctly himself. So, it’s been a few years now we’ve been working on this and I’ve been pleased as punch that at least the shorts go over his bottom and the shirt covers his torso—who cares if it’s backwards or inside out. Apparently, the rest of the world. So, we’re moving on to the next step. If he puts it on backwards, and then takes it off to turn it around, it (shirt, shorts, underwear, whatever) inevitably gets turned inside out. And rather than correcting it at that moment, he puts it on again. Then, he takes it off to turn it back to right side out and then back on—hopefully not backwards. It took us 20 minutes to put on a pair of shorts the other day when we were practicing. This morning, however, he got dressed—completely on his own with me just watching—within ten minutes. Hot diggety-damn-dog! I hope this carries through the weekend and beyond!

T gets himself dressed prettily easily and most times remembers clean underwear. Yay, T! He also is autonomous for the most part in the mornings now. He gets everything ready (all his papers are double checked to be in his binder, his schedule is folded just so and placed in the window of his binder for easy viewing until he memorizes it, etc.), dressed and shoes on. THEN he usually plays on the computer until it’s time to go. Doing things backwards this morning really threw him for a loop though and he said he kept wanting to go back to the computer because that was his routine for the past 3 years. He said this as we headed out the door and to the bus stop.

The bus came much later than I had anticipated. I thought it was going to come at 7-something but it didn’t come until about 7:15. Yes, I know that’s still 7-something. But I thought more like 7-oh-something. But hey, that’s good cause that means we don’t have to leave until 7 a.m.! That means, they get to actually finish watching a show instead of missing the last five minutes or so. So, the boys are definitely happier with the new school hours and for the morning time, it works.

Now, though, they don’t get home until closer to 4 p.m. This throws off our whole after-school routine. Between the hours of 2-5 p.m. is T’s peak time for working and thinking. So, before, he’d get home at 3:30 and have a snack, and then do homework at 4. Between 4 and 5, Bboy would enjoy some free time on the computer or TV while I made supper—keeping close by to keep T focused on what he’s supposed to be doing: his homework at the dining room table. Well, yesterday that didn’t work out so well because our table is buried under clean clothes and I’m not back yet into the groove of school time and completely forgot about supper. We had been cooking later because we do not have a/c in our kitchen—we wait for the sun to go down and/or just have sandwiches/soup kind of deal. I wish this weather would get in sync with it being school time and cool down so I can cook before the boys fall asleep from pure exhaustion. While we have had cooler temps, high 90s as opposed to over 110, it’s still not quite cool enough for *me* to cook. So all day I’ve been thinking about how best to arrange our task-based schedule to actually fit the clock of the boys’ bodies. I decided we’re eating out tonight after we do our running around.

So, at 3:30, after the nurse left with my pee (heh), Jerry and I head to the bus stop to collect the boys on our way into town. Darn it, we noticed we forgot the scripts for Jerry’s current health issue and it’s already been four days since we were supposed to fill them. Of course, he was mad I didn’t send our PCA out to do this earlier today because I was napping while kids were at school. Well, he was napping too and it’s HIS PCA too, and HE could’ve woken up and asked her! We’re fortunate in that she doesn’t mind just coming in and doing her thing while we snooze. Some wouldn’t. The rules require us to be available and awake during the times they’re here. I suppose I could’ve left a note for her with the scripts and some money to pay for them—but I just plumb forgot about them. It happens. A lot.

So, J drops me off at the bus stop in case the boys came early, and went back to the house and got the stupid scripts. Of course, I told him where they were wrong, and he had to take a bit of time to find them and while he was doing that, I was standing out in the hot sun. Never was I so grateful to sit my fat butt down in all my life when he came back! Ouch, my back was done for. I think if I ever win the lottery, I’d built a bench with covering there for all those who need to wait for the bus for future residents. There was little shade and little breeze at that point. Oh man and I still had to do the errands!

So, the bus comes finally, and Bboy beebops off the bus, with another little boy and a little girl. No T. The bus driver starts to pull away and I get out of the van. I go up to the window (he had spotted me) and tells me before he could stop my oldest, he got off at his friends’ house, The G’s. Say what? You let an autistic kid get off without written permission? My T is not a small child. His pants are 40 x 30. He’s a big boy. He stands at 5’5”. He’s just about to turn 13. He is *very* hard to miss in a crowd with his Mohawk and forelock hair-do. He’s been riding this same bus, with the same driver, for 3 school years (this is the 4^th). How does a child like mine get past you “before [you] can stop him?” I gave up. Didn’t yell. Kept my cool cause Bboy was right there on the verge of panicking and melting down because T. was “missing.”

Jerry confirms with the driver where he was left off. We drive down there, mistakenly stop at the wrong house, the woman who did live there kindly helped us figure out we had to go up the road a piece more. So, we did that. I get there, say hello to the kids’ dad (thank God a grown up was at their house). Saw T. I looked him in the eye and said “Grab your stuff. Now. You did NOT get my permission to come over to school this afternoon before getting off the bus.” Now, their dad was mad. He felt used. He had assumed T. had my permission because he was there. Normally, they do call me before coming to get T. to make sure it’s really okay with me that he spends the night.

Well, this past Tuesday or Wednesday, before school started, I had said T. could spend the night at his friend’s house. I did NOT give him permission to get off with them at the bus stop though. He was to go with us because his glasses were ready—a fact he knew that morning. So, T. knew he was busted and just said “okay” and went to get his stuff. I thought about it while he was gone and decided I was going to make him stay. He seemed really happy to come with me and I got to thinking he must be feeling anxious at being there. Staying over at friends’ houses has never appealed to him. Only recently has he begun to even try. I decided it served him right to stay over. LOL…. So, I told him and the kids’ dad that T could stay. As I was getting into the van to leave, T came out, apologized and begged for his friend to sleep over at our house instead. I said “No. YOU decided to get off the bus. Live with your decision.”  Also, a bonus: I got to go buy his birthday present without his presence! When T hears about how we went to dinner, and went to Super Cuts so Daddy could get a haircut, he will be upset he missed out. I think those natural consequences, plus having to deal with the anxiety of being at a friend’s house during a storm, will be enough punishment. For any neurotypical kid—giving them what they wanted wouldn’t seem like punishment at all. But trust me, for T. it is!

I didn’t get to hear about T’s day but Bboy did offer some more information today without prompting. Not only did he get to give Ms. A a high five instead of hugs and kisses, but they did not have “snack packs Friday” until next week. The school sends home donated food items for the kids to enjoy over the weekend—cereal boxes, granola bars, etc. Bboy, the generous soul that he is, shares with T who no longer receives them since he’s at middle school. Apparently older children don’t need to eat on the weekends? I dunno. He also did not have computers today but he did more “math facts” with Ms. J.M.  He did not say this happily so I am thinking he’s really missing Ms. A and her style of teaching. She is really a gem; therefore, a rare find. How-some-ever, as I have explained to Bboy, we can’t always pick our teachers, bosses, or anyone we interact with. Sometimes we can and sometimes we can’t. So, we have to learn to get along to get somewhere we want to go or to do what we want to do. He agrees that he can work with Ms. J.M. as she is not like Mothra. Okay.

After chasing T. down and making a decision to make him live with his decision, we went to eat first. Bboy was “ravenous” as he said and J and I hadn’t eaten yet as we slept the day away. I asked Bboy what did he have for breakfast: biscuits with CHOCOLATE gravy. What nutrition! And, of course, chocolate milk. At least it’s skim milk? Never mind they have on file STILL the letter from his doctor dictating he is to follow the diabetic diet from the Diabetics Association. Chocolate gravy is NOT on their approved list. Ugh. Well, hopefully the metformin is working for him. I asked what did he have for lunch that made him so hungry now. And he said “A crispito.” I had to look that one up not too long ago when I saw it on his menu. A crispito is a Mexican specialty, a delicate flour tortilla tightly rolled and filled with a flavorful chili. As branded said “I had to choke down the spicy!” And he showed me how he did that: by wrapping his hands around his throat and literally chocking it down. He scared me because he got this weird look and I can tell he was actually choking himself. Did some moron at the school tell my son to choke down his food? I think so. Of course, with him having autism, he did EXACTLY as they told him to do. Literally. Idiots.

So-eniways as my friend who also writes a wonderful blog would write—we make our first stop at Western’ Sizzlin where Bboy orders a cheeseburger and fries, instead of the buffet. He orders it with ketchup and cheese only. It comes with all the fixings on the side of the plate. At the time it came, he was in the bathroom, so I quickly swooped lettuce, tomato, and pickle off his plate lest he see it and not eat any of his $8 burger. Last time he ordered a burger and they put mustard on it with ketchup (how could they miss his singing “Cheese, ketchup, patty on a bun only!” over and over again is beyond me) at the A & W and he wouldn’t touch it, even after I scraped the mustard off and put more ketchup on. Even after I made them make him another burger. The whole idea was ruined. I did NOT want a repeat! So, he came down and pouted at his burger. I asked what was wrong. He said “I thought I said no seeds!” I looked at the bun. Oops. Now, he never had a seed problem before. This is new but is still in line with his liking “smooth” food. So. Now what? I had him take off the top bun and I’d cut it into pieces for him. He threw the bun on the floor “accidentally” and I cut it up for him, about ½ of it. It ate about ½ of the ½ so about a total of a ¼ of the $8 burger. Because of seeds on a bun. Ugh. Sometimes, and these are the moments, when I wish he’d just “get over it.” Having had similar issues, I know it’s easier said than done—but I’ve done it. I want him to do it too. Yes, he’s only 9. But… ugh. I’m tired today. But at least he ate some of it unlike the other burger that came home and went to the dogs. He did eat all his fries and mine that were waffle fries from the buffet. I reminded him that waffle fries are not smooth. He said “yes they are. They have ridges but they don’t have bumps.” Okay.

So, we get through supper and Bboy is very well-behaved despite seeing signs of tiredness creeping in. It’s only about 4:30 p.m. at this time. But having full days in regular education classrooms except for one ½ hour period of time where he gets pulled out for the advanced math help—well, yeah, I guess he would be worn out, huh? I was proud of him because there were other children in the restaurant. I do not know if any of them had autism or any other invisible disabilities but they must have as none of them could sit still or stop from crying, fussing, carrying on and so forth. And none of these children were under the age of five. So, I’m guessing, they all had rough days at school, too. I can be very forgiving of other children’s misbehavior in places because I know how easily it is to judge the parent whose child is literally hanging from the walls. However, Bboy is not so forgiving usually. Maybe he was just too tired to care?

Well, towards the end, one little boy grew very fussy and whiny. Bboy asked where the crying was coming from because the boy was seated at the end of the table kitty-corner from us and a person was in the way of the view. I described where the boy was for Bboy. He asked why was the boy crying? I said “I don’t know. Maybe he is tired?” And Bboy said: “yes, I know that feeling. I get tired and can’t control my emotions either. They go winky-wonky on me.” Holy cow! EMPATHY EXPRESSION! Again! In less than a week! **waits for the applause to die down** yes, I knew YOU would understand how awesome that is.

Now, it dawns on me at this point that I have not really heard too much scripted speech from Bboy. He has not babbled incessantly. He has not repeated scripts from TV shows at all. Except for saying his math teacher is not Mothra, nothing at all out of the ordinary really. Quite odd, indeed. All novel, mostly unprompted communication. Wow.

So, we leave the “tip” and head out to the barber shop. Okay, it’s a freakin’ salon but they don’t have a barber shop here that I know of. And I love SuperCuts! I’ve been to one before and didn’t like it so much. But the girls at this one are really awesome and patient. They’re so good Bboy gets his “Bald Brando” look, where they use clippers on him there. CLIPPERS. That go BUZZ. And VIBRATES against his brain! Of course, T being my little divo, he loves going with me to the salon to get our hair done and colored and styled and all that. One of these days, I might take him to get a mani/pedi at the nail salon. I think he’d enjoy it.

So, I dropped “the boys” off for J’s haircut and went on to Walmart. I dropped off J’s scripts and reordered his other meds he was out of. I then went and purchases T’s birthday presents and gift wrap, and cards and school supplies that I was gonna purchase last night but didn’t feel up to going out. By time I was done, storm had kicked up some high winds, rain and hail. I booked it back across the street to pick up the boys as I was much longer in my browsing than I had planned to be! We went home cause I was freaking out about the storm and Bboy couldn’t stay awake! He had fell asleep waiting for J’s turn to get his haircut and I thought we were going to have to carry him into the house. I brought in the purchases, just inside the front door, in two trips, and sent Bboy to bed where he promptly fell asleep—in his day clothes, with shoes on. I said “screw it” and went to the office. It wasn’t until after I rested a bit that I got him into pj’s and relaxed a bit more. Then I carried the stuff through the house in one trip to the office to get sorted out before T returns home and figures out what he got for his birthday. I have to hide it though—a really good spot. Every year, T. tries to find his birthday present. Every year, I remind him that if he finds it, it gets returned. The joy of the birthday is he does not know what he gets. Same as Christmas. One year, because apparently I’m a liar, he didn’t believe me and found his present. I returned it. Yes, I followed through so he would know I meant what I said and I say what I mean. Yes, of course, I bought him something else! But he didn’t get *the thing* he wanted. He has to learn to accept surprises as life is full of them! And not always such a good way either. So enjoy the good ones as they come. I’ve been criticized for sharing this before, in public online. I don’t give a damn what those other people think of my parenting. I know I am doing what is best for him in the long run. If I had let him search and find his birthday present before his birthday, I would not have been able to buy him something else for that day. He would have been disappointed as we can only ever afford ONE gift and the past couple of years, my father has been paying for it because by time school shopping is done, and bills are paid, there’s usually nothing left for a birthday cake, ice cream, and a present. And it truly is a life lesson for someone with autism: to be able to accept and appreciate surprises and things that don’t go as planned. So, if someone doesn’t like my decision, they can pound sand. Not to mention the long-term effects of not following through on “threats” we make as parents. *THAT* is how children learn you don’t really mean what you say.

So yeah. There.

P

When we got home, after J caught his breath sitting in his office chair, he went to bed. And with Bboy asleep, and T at his friend’s house, I’m the only one still up. And it’s storming outside. Good thing Molly, my Jack Russell/Chihuahua mix is also scared of the storms—she’s almost literally glued to my side right now. Just minus the actual glue.

I just looked at the page count on this sucker as I always write these in Word before posting, in case I lose power or internet, Word auto-saves. Page 7. Holy cow. Guess I better wrap up then!

 

What a day. I think I’m going to bed! I haven’t even touched 1/2 of what happened today. Wow.

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.

Back in the Day… When I was that age…

I have often heard this phrase: “Back in the day, when I was a kid…” and it usually follows with some form or shape of how I need to spank my kids to make them behave better. If I would just give T a good wallop on the behind, he’d behave better. He’d listen more. He’d pay attention to authority figures, by god! If only I had a penny for every time I heard that! I’d be a rich woman by now! I get it from teachers, friends, family, and strangers alike. I even get it from my husband.

 

He wrote this blog recently: Back in the Day (http://aviewfromthemountain.wordpress.com/views-from-the-mountain/back-in-the-day/) where he discussed this viral Facebook status:

 

“When I was a kid I didn’t have an xbox, wii, ps3, or cell phone. I had a bike and a curfew a.k.a the street lights. I lived outside, not inside. If I didn’t eat what my mom made then I didn’t eat. I didn’t dare tell my mom “no,” or talk back. Life wasn’t hard, it was life. And I survived! Repost if you drank water out the hose and hand sanitizer didn’t exist, but you COULD get your mouth washed out with soap.”

 

In my husband’s blog post, he took a trip down memory lane, sharing the details of an incident from his childhood. He then shared a similar incident with my son and compared the two. He wondered if my son would learn the lesson being taught without the benefit of corporal punishment for any length of time.

 

Yes, he did. It’s been months now and he has not played with matches. He has not asked to play with matches. Or even the lighter and candle. Heck, we can barely get him to ignite the burn barrel now. And he learned that lesson without the benefit of his hands being smacked or his butt being spanked.

 

Let me say this first off: I do not believe that spanking in general is physical abuse. That is certainly not what my husband was referring to either. We are talking about spankings and not beatings.  He mentioned that he had survived the way his parents raised him. Yep, I got spankings too growing up (a whole whopping 3 of them). But, since he brought up my beliefs against corporal punishment for children, not just those with autism but any child really and especially for those with autism, I thought I’d share WHY I believe that while back in the day parents spanked all the time does not mean we need to spank now.

 

We, well, not me and my husband per se, but some humans somewhere, build bridges. We build them so we can get from point A to point B when there is something else in the way. That could be another road, a river, a ditch… whatever.  There were bridges 200 years ago even. Maybe not in America yet (heh) but we had them elsewhere in the world. Could you imagine building a bridge today like that which was built 200 years ago? Why not? We use different techniques today to build bridges because we know more now about building bridges. We can make them stronger, hold more weight, and be resistant to natural forces such as earthquakes.

 

We build buildings too.  Big, hulking, skyscrapers.  We didn’t do that 200 years ago (I’m not sure when it started) but let’s just go back 54 years like my husband did. In that 54 years, we’ve learned how to build houses so they are more efficient energy wise, so they are resistant to burning down in a fire, so they can withstand hurricane force winds and tornados. We can build big, tall buildings that are resistant to earthquakes even. That’s something we did not have just 54 years ago. So, if what we used to do, and what has always been done, is good enough in the world of disciplining our children, why do we bother advancing in other areas?

 

My husband loves his computer. He has a degree for his knowledge of how to make applications systems. All kinds of systems! He can debug them too. His knowledge is amazing to me. He created a phonebook application on my computer with just typing at some keys and clicking of a mouse and viola! I had a purple address book on my computer. And a recipe database for all my recipes. ALL of them. That’s amazing! Little things like that are truly wondrous to me. But we didn’t have that capability 54 years ago.

 

We do things differently, and in some cases better, than we have done them in the past because we know better now. We now know how to discipline our children with punishments and rewards to create the desired behavior we want. The problem isn’t that I don’t spank T. The problem is that I’m not (and my husband is not) consistent with the discipline. I fully take blame for T’s behavior for the first 8 years with him as I was totally a permissive parent. I’d often look the other way and pretend I didn’t see a bad behavior because I couldn’t cope with the stress of being a parent on my own. I admit it. I feel guilt over it. That is why T acts the way he does now. Not because I didn’t spank him, but because I didn’t discipline him AT ALL.

 

I have found a technique that works with T and when I can remember to use it, it works. Jerry even admits it works. So, why can’t we seem to stick to it? Our own old habits get in the way. He wants to spank or yell like he did with his kids and like his parents did with him and so on back through the generations. I want to look the other way and pretend I didn’t see it because I’m tired. 

 

Also, with spanking, we’re hitting our kids in an erogenous zone there on the buttocks. Their brains are still wiring themselves and forming synapses and connections. There have been studies showing a link between being spanked and forming “sexually deviant desires” known as bondage and discipline, sadism and masochism (BDSM). Of course, some will argue that those are sexually deviant matters or preferences. And some will argue that they were not spanked and still have those fetishes.  But what’s true for the majority does not have to be true for all: there will be exceptions to every “rule.”

 

And, as my husband did mention in his post, T would not connect the dots between his behavior and his receiving a punishment. We’re still working on that. I wonder if it has more to do with the bipolar disorder than the autism, but whatever the cause, he equates the punishment with the person giving it and not the behavior he’s being punished for. So while my dear husband may say he did not fear his parents, I know T fears him.

 

We want our children not to pick up the message “Oh, when Mommy or Daddy gets mad at me, they hit me.” We want them to get the message that “When I make a bad behavior choice, I get a bad consequence I don’t like.” We do not need corporal punishment to send that message. It brings to mind an episode of SuperNanny that I saw. This poor woman had 7 children within 8 years. She was stressed beyond belief and she constantly spanked (really, swatted) her children’s bums, and yelled almost constantly. I was hard pressed to find a time, in the beginning, when she talked to her kids in a normal tone of voice. I am not judging her, just stating what I saw. Once SuperNanny, Jo Frost, got the mom to agree to try something new (don’t get me wrong, I don’t like time outs either)… we saw the mom getting very frustrated as her daughter pushed her buttons. Her daughter was TRYING to get her mother to spank her because she wanted to prove that her mother hadn’t changed, wasn’t going to change. There was a moment where mom was yelling, at the top of her lungs, at this child, in her face. It was quite disturbing to watch. Jo pulled her away, grabbed mom by the shoulders and began speaking to her, asking her how was she feeling, what did she want to do, etc. The mom said she wanted to spank her daughter. Jo asked why, and Mom said “Because I’m mad!”… Jo pointed out that mom only wanted to spank her child to relieve her own frustrations and it was not about teaching the child the lesson at hand. Quite an impact on a person when it’s shown so clearly like that.

 

I realize that not every parent who spanks does so to relieve their own frustration and tension. For some, a rare few, it is all about the teaching of a lesson. But for most?  It *is* about the anger the parent is feeling because their child dares to do something they, the parents, do not like.  And in the end, kids DO fear their parents and not the punishment. It’s not “oh man, I just did XYZ and I’m gonna get it now!” No, it becomes “Oh man, this is gonna tick off Dad and Mom! They’re going to be so mad at me!”.. and what we really want, if we’re using aversive tools to try and teach correct behavior, is fear of the punishment, not the punisher.  I believe there are far more effective techniques that parents and doctors and other people have learned over the last 54 years about human behavior and child development that we no longer need to do what we did “back in the day.”  Jerry and I just need to parent our children consistently and make a plan of discipline we both can agree on and make sure we both follow through with THAT plan so we do not resort to past habits.

 

Now, as for the rest of the post, I can genuinely agree with him. I miss those days from my childhood, just 20 years ago, when we spent more time outdoors than in, when we came home when the street lights came on, when we drank from the hose, when we built forts in the woods behind our houses and camped out in them, when we could go trick or treating age seven with our pals, when we could ride our bikes around the neighborhoods, and so on. There are so many things kids are not allowed to do any more for their “Safety” (and some of that is not so bad), but it has taken a toll on the way society lives now. We are less free to be than we have ever been before. And it is not because we do not spank our children anymore. If anything, it’s because kids who were spanked more are now grown and out there in the world practicing sexually deviant behaviors on children. (Okay, so that is a bit of an extremist view there! And not sure I really believe that but it seems logical to me).

My frustration with Chronic Pain:

 

“I used to do so much with my time. I once was working four jobs! How do I go from working two full time jobs and two part time jobs to just barely being able to stay awake long enough to tuck my kids into bed? How did I go from being able to walk the three miles to work to being able to barely walk to the other side of my house? How did I go from playing hide and seek, tag (“touched ya last”), and board games with my kids, to barely be able to handle having a conversation with them? Fibromyalgia. It stole a lot from it. And that pisses me off. It really does. But more on that in another post. ”

In addition to the fibromyalgia, I also have osteoarthritis and degenerative joint disease (they’re basically the same thing). The osteoarthritis is located not only in joints, but along bones as well. But if the patient only has the pains in the joints, that’s when they call it DJD. I have it in Every. Single. Joint. In. My. Body. Including. My. Toes.

{source: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001460/ ]

Osteoarthritis or DJD is caused by the wearing away of cartilage.

• Cartilage is the firm, rubbery tissue that cushions your bones at the joints, and allows bones to glide over one another.
• Cartilage can break down and wear away. As a result, the bones rub together, causing pain, swelling, and stiffness.
• Bony spurs or extra bone may form around the joint, and the ligaments and muscles around the hip become weaker and stiffer.

It is an “old person’s disease” to me. Usually people over 55 start getting symptoms and by age 70, the diseased has progressed to the stage I’m in now at the age of 34. I got this disorder from my mother’s side of the family. Thanks, Mom!  Ha! At any rate, I think the DJD began early in age after a football injury tore apart and eviscerated my cartilage in my right knee. I didn’t have it operated on until age 14 though.  I learned to deal with the pain. The awesomeness of my autism, I believe, is what allows me to disassociate from the pain. My then orthopedic surgeon told my father a story: “Your daughter is one of those types of people who could be sitting at home alone, with a gouge on her belly, her innards dripping out and someone calls. She’ll answer in response to “How are you?” with “oh, I got an annoying scratch but other than that I’m good.” LOL He summed me up well!

My knee was in such poor condition, he felt he might have to operate it open-knee style instead of laparoscopically. However, a new manufacturer of one of these devices asked the doctor to try theirs out, let them film it for promotional materials and see how it goes. This was at a teaching hospital. I okay’d it, and we did it that way. Came out beautiful, if I do say so myself. I was able to walk out of the recovery room, holding my crutches instead of using them. J

From that point on though, the damage was done. You see, because I did not get my knee checked out at the time of the original injury (other than to elevate it and ice it the first day it was swollen), I developed a funny way of walking so I wouldn’t limp. It made my hips go out of proper alignment as well, leading me to develop scoliosis.  Having things out of alignment, tears things up quicker than normal.

“Pain and stiffness in the joints are the most common symptoms. The pain is often worse after exercise and when placing weight or pressure on the joint.

Your joints become stiff and harder to move over time. You may notice a rubbing, grating, or crackling sound when you move the joint.

The phrase “morning stiffness” refers to the pain and stiffness people feel when they first wake up in the morning. Stiffness usually lasts for 30 minutes or less. It is improved by mild activity that “warms up” the joint.

During the day, the pain may get worse with activity and feel better when you are resting. After a while, the pain may be present when you’re resting. It may even wake you up at night.”

[source: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001460/ }

You can see that there are similar symptoms between OA (osteoarthritis) and fibromyalgia (FMS). The morning stiffness, the fatigue, the pain, the pain, the pain. The problem?  “The pain is often worse after exercise and when placing weight or pressure on the joint.” See, to treat my fibromyalgia before, I’d exercise. It was the only way to get the annoying aches to go away. I’d take a nap after exercise, and wake up feeling pretty damn good! I could keep my house clean, I could cook dinners still, I could rouse around with my children still. Not a big deal anymore!

However, that wear and tear from treating my FMS made my OA worse. It wore out more cartilage in no time. Even though most of the exercises consisted of stretching (and bending at the joints!) it did considerable damage. I’m at the point now, where I can barely walk 10 feet before the pain becomes so intense I *have* to sit down or I will *fall* down.

Currently, to treat my FMS, I’m  taking two medications. One is called lyrica and it takes away most of the muscle aches, the neuropathy pain in my feet, hands and upper back that feel like a million wasps stinging you at the same time, and allows me to sleep. Like, for real sleep. Like, I even dream sleep! Oh that is so awesome! And for more than an hour at a time usually. The problem? There’s a side effect to Lyrica which makes the fatigue 10 times worse! I couldn’t even get out of bed in the mornings anymore… my previous post mentioned my day –to-day routine and that has so changed since starting Lyrica. I don’t have the energy to do even that anymore! So, doctor put me on Savella. I had tried it before but it did nothing for the pain, any of it, and it kept me awake for days at a time. It was like I was on speed! My mind was going a mile a minute but my body couldn’t keep up! So, I had stopped taking it to try Lyrica. Well, since Lyrica puts me to sleep or just makes me so tired, we added Savella for the energy boost. It works! I just only take it in the mornings though so I can sleep at night and I had to add back in my Ativan because I became more anxious on the Savella than I was before.

However, as much relief from pain I feel when I manage to remember to take my pills, I still have CHRONIC PAIN in my lower back, hips and knees. They lock up on me when I’m trying to walk and then I fall. Or they give way, and I fall. Or they can’t lift me out of a chair and I fall. It freaking sucks! And if I try and treat any of this with its recommended treatments, guess what? It makes my fibro worse!

From the same source above:

Complications:

• Adverse reactions to drugs used for treatment
• Decreased ability to perform everyday activities, such as personal hygiene, household chores, or cooking
• Decreased ability to walk
• Surgical complications

These are the complications that come from treating OA, either with medication, physical therapy, acupressure (which hurts the fibro tender points!), and/or surgical options.

I think I’m at the point where surgery is needed but there’s a problem with that. Say, for an example, they operate on the lower discs in my back. They get them realigned and inject fake cartilage in there to help protect the discs from rubbing against each other, right? Well, now the rest of my spine is out of place, as my hips bones. Then my shoulders are out of alignment and so on throughout the body. This would then require multiple surgeries. I’m not sure I’m at that point yet because even if I do these surgeries, there may be complications. One person I recently heard of went completely blind, forever, following back surgery. I’m not sure yet that the unguaranteed results outweigh the risks involved. But I may soon not have a choice. Or rather, the choice will become: wheelchair or surgery. At age 34.

I had my children on purpose. There was a plan in place. One of the considerations of my plan was my age. I wanted to have them young enough so that I would be 45 years old when my youngest turned 18. Sounds good don’t it? 45 years old and an empty nest! I would still be young enough to enjoy those years.  Or so I thought. Now with my chronic pain issues… well, not so much, huh? Don’t get me wrong, I love having kids and it’s what I wanted to be when I grow up. That was going to be my job. But like others,  I would retire from my job and look forward to that time in my life. Imagine if you could retire from your job at age 45? Wouldn’t that been grand? Well, such as life. Because even if I didn’t have chronic pain issues, my sons have moderate forms of autism that affect their functioning abilities and they may never be able to live independently or interdependently outside of my home. I hope that they will… strong hope for my eldest. But I have hope that they can achieve this goal of living on their “own” by say, age 25 or so. They just need a few more years in their arc of maturity is all. Still, that would leave me at age 49. A great young age in which to enjoy retirement. It would’ve been nice. But it seems it won’t happen QUITE the way I pictured it. Between the OA and the FMS, the DJD, etc. I’m going to be wheelchair bound.

That in itself isn’t so bad, don’t get me wrong. But when you go from a person who worked four jobs at one time, who could and did walk for miles on end for the simple enjoyment of it, and so on to being wheelchair bound? I think I’m going through a grieving process. I know at the end of this process, I’ll accept my new normal. Just as I did with the fibromyalgia. Just as I did with my kids’ autism. Just as I did at every life-altering event.

I do not tend to ruminate on my problems. I will do a status update on Facebook about it, and get supportive comments. It’s my support group. But I do not spend hours a day thinking and wishing life were different. Of course, I do wish life were different but I found if I stay stuck in that mindset, I stay stuck in great pain, anxiety and eventually it all leads to depression.  I don’t like being depressed. It’s so…. Depressing! So I avoid rumination and if it’s a tough day, I give myself that time to wallow in pity for an hour or so, and then pick myself back up, dust myself off, lecture myself and remind myself of the positives in my life. I acknowledge the sucky and praise the blessings. That is how I cope on a daily basis of chronic pain.

It’s not easy on my family either. And I often do not complain out loud to them when I’m in pain. What’s the point of advertising my troubles where there’s no market to sell at? If I continually tell them “I’m in pain right now, about a level 6,” they’re going to get sick of hearing it. They will build up an air of “Yeah, but you’re always hurting. What’s new?” type of mindset.  Asking my kids and hubby for help makes me feel so guilty. So guilty I could cry. It’s not fair to them to have to wait on me, serve me dinner, coffee, whatever. But some days, I have no choice and I have to ask. Those days are coming more often than not. Maybe if I had the wheelchair, I could do more for myself because I could get to point B from point A without as much difficulty and pain.

There is a story out there that can be used to describe our life to others. To those who looks at us and see no deformities and ask “What’s your problem? Why can’t you just do it? The more you do it, the better/easier it will get! Quit being a crybaby! If you didn’t whine so much, you’d feel better. If you ate more vegetables, you’d feel better. If you’d pop vitamins like candy, you’d feel better.” And the list of unhelpfulness goes on. So, how do you explain to others that support should come in other ways than snide remarks of “you’re just suffering from laziness”? Simple. Tell them the Spoon Theory. You can read it here: http://www.butyoudontlooksick.com/articles/personal-essays/the-spoon-theory-written-by-christine-miserandino/  I still get teary-eyed every time I read it.

 

My husband now asks me “How many spoons ya got?” before asking me to do something and I return the favor. It’s a way of acknowledging the circumstances without making the other feel guilty if the answer is “none.”  It’s a way of acknowledging the sucky, without dwelling on it or complaining about it constantly which erodes sympathy, understanding and compassion that those of us with “invisible disabilities” so desperately need from our loved ones.  It can also be used to describe other disorders, such as Autism, or Sensory Processing Disorder. Any disorder actually. I hope you take the time to read it and understand it. It’s very valuable to the disability community in advocating support for themselves.

 

So, now you know a bit more about why I’m frustrated with my life.

 

My Day

I decided to write a post about what a day consists of for me. It changes–goes in cycles depending on when I’m sleeping. If I’m sleeping at night, my activities happen during the daytime and if I’m sleeping days, they happen in the evening/nighttime/early morning. LOL

4:00 a.m. I’m usually UP before this but not AWAKE until now. I usually spend time from about 2 a.m. until 4 a.m. waking up. This involves drinking a bunch of coffee and reading notifications/messages/group posts on Facebook. Or I play Solitaire on the computer.

4-6 a.m. I take my meds, drink more coffee, and eat breakfast. If I have to cook breakfast, that takes longer. If hubby cooks, I only spend about 1/2 hour doing that. I also take time during this period to toss over clothes from one machine to the other, and clean clothes to the dining room table for the owners to pick up and put away.

6:00 a.m. – 7 a.m.: I wake up my oldest, T (12 y.o.) for school during the week. I make sure he changes into CLEAN clothes (no sense showering just to put on dirty clothes, but this he does a lot). I check his breath/teeth to make sure he really brushed his teeth and didn’t just rinse with mouthwash. Make sure he has all his homework completed and put into his binder (we used to call them trapperkeepers). Then he eats a small snack to take with his medicine (synthroid and metformin). He makes his bed and brings out his dirty clothes. We then head to the bus stop a quarter mile away and then I come home for the next part.

7 a.m. to 8 a.m.: I wake up the youngest, Bboy (9 y.o.). I get him changed (I help dress him although he puts on his own socks now and mainly gets dressed on his own but I make sure it’s not on backwards and/or inside out). He brushes his teeth with my supervision. He does it on his own now but I make sure he’s actually touching his teeth with the brush otherwise, he won’t. He washes his face and hands (he takes baths at night). Then he eats a small snack and takes his medicine (also metformin). He plays on the computer after that. And then at 7:45 a.m. I take him to the driveway and wait for his bus which usually arrives at 8 a.m. but sometimes is early if one of the kids that gets picked up before him doesn’t attend that day. But we have to be out there as we never know when the bus will come early/late and she will leave without honking if we’re not out there.

8 a.m. to 9 a.m.: I watch Steve Wilkos. It’s my connection to the bizarre that reminds me that life is not that bad. It could be a whole lot worse~!

9 a.m.: I make phone calls to various doctors, therapists, nurses, school, agencies, etc that I may need to make. Sometimes I even call a friend! Usually call Pops and he’s out on his daily walk LOL.

10 a.m. I switch over the laundry and put away clean clothes that no one else put away from the day before

11 a.m.: I go to bed because I’m absolutely exhausted. I am so sleepy I can no longer keep my eyes open. I don’t know if it’s the fibromyalgia getting worse or it’s the effects of my new med, Lyrica that I use to treat the aches of fibro.

1 or 2 p.m. I wake up because my personal care attendant arrives. She makes me lunch, does our dishes, runs our errands, helps with laundry, does some general picking up, taking out trash, etc. Recently, I’ve been blessed to have some really good PCAs. They’re sweet ladies that genuinely cares about me and my family. You can tell when someone cares. The one I have now is super sweet. She helps me try and figure out solutions to some of our problems (such as getting help to clean the rest of the house that’s not in her job descriptions, etc). She understands people with autism like no one I’ve ever met before that did not have autism as well. She says her mom is even more experienced. She asks before she touches our stuff! She asks where do I want it, is it okay to move it, etc. She gets the OCD and OCD traits my kids have! Really sweet girl.

3:30 p.m.: The kids come home. We do their chore chart stuff (eat afterschool snack, do homework, and then free time.)

5: 00 p.m. Someone cooks supper. Sometimes our PCA has cooked it earlier in the day and we just reheat. Sometimes I cook. Sometimes Jerry cooks. Sometimes T cooks. It just depends on the day. Most days this past week I have been unable to cook, so Jerry and T have been doing the cooking.

6:00 p.m. We eat whatever was cooked by whoever. LOL Jerry starts watching his news programs on MSNBC as well. He periodically lies down and tries to sleep throughout the day and night. He has real trouble sleeping and sleeps about an hour at a time.

7:00 p,m. Clean up starts. The kids clean the front room after the mess they’ve made. Dishes in the sink, trash picked up, toys put away, etc. They also clean their rooms if needed. Boys (jerry and the kids) eat their evening snack (dessertish). Bboy takes a bath and brushes his teeth. He then reads for 30 minutes or so before lights off at 8 p.m.

8:00 p.m.: T starts his evening routine by take his nighttime meds (intuniv and prozac). He then spends time making sure his homework was completed from earlier in the day. He plays some on his DS and/or watches TV until about 8:30. He then picks up his cat(s) Tigger and ScarFace (depends on if both are in the house at bedtime or just one or the other). He goes into his room and reads until lights out at 9 p.m.

If I’ve managed to stay awake during this process, I now take my meds and crash into bed and sleep until about 2 or 3 a.m.

Doesn’t sound like much, huh? And yet, it takes so much for me to do all that and to make sure all that gets done. Sometimes I don’t even do this much. Sometimes I just stay in bed. On and off throughout the day, I’m on Facebook communicating with others in between these activities. Sometimes instead I do some painting. Sometimes instead I do some reading.

I used to do so much with my time. I once was working four jobs! How do I go from working two full time jobs and two part time jobs to just barely being able to stay awake long enough to tuck my kids into bed? How did I go from being able to walk the three miles to work to being able to barely walk to the other side of my house? How did I go from playing hide and seek, tag (“touched ya last”), and board games with my kids, to barely be able to handle having a conversation with them? Fibromyalgia. It stole a lot from it. And that pisses me off. It really does. But more on that in another post.

Autism, Roommates, and Judging Characters.

“People with Autism are not always great at judging people’s characters.”

This was said to me last Monday by a therapist (not mine) when I asked for hints on how to deal with a situation I saw building with a roommate of ours. He gave me some tips, told me something I already knew but needed reminding of. Really helpful, actually, as best as he could be.

Well, I never thought of myself as being a bad judge of character but after what happened today, I may have to rethink that position. Maybe I *am* one of those autistic people who do not judge character well. I should’ve listened to those around me who were trying to warn me, especially my husband. Next time, I will. If there is a next time!

We use an agency that provides in-home care. We have our personal care attendant (PCA). Our insurance companies cover the costs of this help (also receive weekly nursing care, etc) because we are physically disabled to the point of being unable to do certain chores, including cooking and cleaning. PCAs also assist with bathing and running errands.

Last year, my husband and I were talking about our spare rooms we have. There are two of them. One of them was my office. The other was… ummm.. what was it? Oh yeah, a laundry sorting room. Actually it was a bedroom, but that’s what we used it for after my mom and step-dad got their own place. So,  we were discussing how to use the space in our house most effectively for us.

We thought about being foster parents. After all, we have the room and there are kids out there needing a good home, ya know? I have talent with special needs kids, wouldn’t that be great? Well, reality is, we physically couldn’t take more kids on. They’d be short-shrifted.

Well, we need help around here. Wouldn’t it be awesome if we have roommates? We could offer a deal: 10-15 hours a week worth of work in exchange for the room. Help with yard work, little household fix-up chores, etc. That sounded like a plan but we never went through with putting an ad out or nothing because the lady who was working for us as a PCA ended up needing a place to stay.

Her name was Misti and I thought she was really nice. She started working for us and on her first day we loaned her gas money to run our errands. This is a big no-no by the agency. One of their requirements is that you keep enough gas in your vehicle to ensure the ability to run our errands. Well, we did it not knowing that, and feeling bad for her as they do not reimburse them for mileage.

The next day, she showed up to work and her husband and three kids were out in the car. This was during the summertime last year when it was at least 100 degrees outside. Are you kidding me? I’m not gonna make some kids stay in a HOT car while you work five-six hours!! I told her to bring them in. She said that’s against agency policy and she’s not even supposed to have them in her car but she didn’t have no place for them to go for the day. They’re bored at home. As if they’d be more excited about sitting in a car?? Really?? Whatever. I told her I wouldn’t tell; go ahead and bring them in. I’m worried about them kids in the heat.

That started a pattern. She not only brought her kids nearly every day, but she started bringing her brother’s kids; her younger (age 12 and 14) brother and sister to babysit while she was working too. I didn’t say nothing cause I absolutely love kids and adored these ones. Yes, they got bratty and whiny at times, but ya know? They’re kids!!

Her husband began taking my oldest son with him to go fishing here and there. She would make us pots of coffee and brings us our cups. I thought the coffee wasn’t in her job description but I was told that’s part of their “meal prep” is to get our drinks for us, too. Whatever. Thought it was super sweet of her. At the end of her day, there’d be time left over and she’d play cards with me on the days she didn’t bring her kids. Rare days, but they happened.

Of course, she never brought food or drinks for her kids (or her brother’s kids or her brother and sister) and I’d offer my food and drinks for them. It wasn’t much… we’re talking soup and crystal light at the most. But still… nice back and forth in my opinion.

Whenever she first got here we had a lot of animals. I mean a LOT. Something like 12 animals. So the house stunk like them and they had accidents in the house. We were trying to get rid of the majority of them but every time we turn around, another one is getting dumped on our property. You face animal cruelty charges if you don’t take care of any animal on your property—whether you want them or not. So, we’d take care of them best we could and find them forever homes. Well, it got out of hand quickly.

I told her, please, if you see a pile of something, from the animals, just tell one of us and we’ll pick it up. Don’t try to vacuum it up (as one PCA did), just let us know. Well, one day I caught her picking some up and I said “I told you just to tell us and we’d get it.” And she said “oh it’s no big deal. I’ve had animals all my life. I’m a country girl. A little poop ain’t gonna bother me none.” And so I let it go.

She worked hard at keeping up with us. She helped me out in areas of the house that weren’t part of her job. For instance, she’d vacuum my sons’ rooms and clean their bathroom once a week and such. It didn’t really take her all that much longer and she always had extra time left over and she said she liked to stay busy.

In exchange for all this extra work, we were extra nice to her. For instance, there were some days she didn’t come to work, for one reason or another. I’d call her in on the phone system anyway. All you had to do was enter codes. She wrote them down for me and I’d do that for her so she’d still get paid even though she wasn’t there working. I felt it was fair of her to ask me to do that.

One day, she told me over the phone her and her hubby, kids, et al were going to a water park. I asked her if the kids and I could come with. She said sure. Then blew me off. She told me later that day that her father and brother ended up going with them, that they didn’t go to that water park cause she ended up not getting paid like she was supposed to and that her brother just wanted a family day. I said “Okay.” That was on a Saturday or Sunday. Later on, her ex-mom-in-law left a comment on my Facebook about her calling her Ex-MIL that day from the water park.  Then, later that week, she talked about loaning money (the same day she allegedly didn’t get paid) to her sister-in-law. That’s when I couldn’t stand it and told her that her MIL told me on Facebook she went to the water park. She teared up and I said it was okay, just don’t EVER lie to me. If she was worried about hurting my feelings, don’t worry about that as I’d rather be hurt by the truth than comforted by a lie any day.

Well, things were going great right along like that until one day she called and asked to stay with us. Whosever parents house they were at, they were getting kicked out of. She told me a sob story of how her mom took her whole paycheck and all of their food stamps and then kicked them out. She had three kids! And a dog. I haven’t seen any shelters for people around here to speak of so I don’t know where they would’ve gone, ya know? So, since Jerry and I had thought of this doing something like this before, we struck a deal.

Above and beyond her PCA duties, she’d cook supper, clean up after, and help around the house an extra 10 hours a week. Her hubby would help with house chores like fixing our swimming pool, or cleaning it, or picking up yard waste, and so on. They agreed. What was my office became their girls’ room. I even sold them a bed that was my youngest son’s bed for a quarter—a quarter she found on our floor. LOL. I went to the furniture place and purchased a bunk bed. I was going to give them the top bunk whenever they moved out so that their son had a bed too.  Her son shared a room with my youngest. They took over the spare bedroom.

Well, from that day forward she really stopped working for the most part. The mess accumulated with five kids, four adults and more animals. She kept up with the kitchen for the most part, but she didn’t do the suppers. She didn’t know how to cook what I bought (I bought meat that didn’t come in a box). She stopped even doing her PCA work—but still clocked in on the phone system to get paid. Jerry, my husband, finally said something to her after about a week of this. She said “yes, I plan on getting back to work. I’m just trying to get settled in and into a routine.” So Jerry dropped it. No biggie, right? Right.

Well, they took my oldest camping one weekend and T had a horrible time and never really wanted to go again but he did go with them during the day to go fishing. Every weekend they were gone to this free campsite to fish and camp out. They’d spend their food stamp money on “camping food” which is basically junk food—Lil’ Debbie snacks and stuff. That next paycheck, they spent it on bathing suits and stuff for her and the kids. I didn’t say anything about it but she had originally told me that they’d not have any more paychecks for the rest of the month. I let it go. She had begun working again around the house so I figured no big deal. I’d cook with her to show her how.  I love teaching people how to cook. It’s fun.

One day, one of her daughters had a birthday and they were throwing her a party at a local park. I went with them and bought a grill, hamburgers, hot dogs, buns, etc. as my part of the birthday gift to the girl. Her brother showed up to stop off and see his kids, including a toddler (who couldn’t walk). I swear that boy had autism or some developmental delay. He was still in diapers, of course. But she forgot a diaper bag. So did the kids’ mom who was also there hanging out. So after the party, we all stopped by the Dollar General, and I bought the kid an outfit and some diapers (they had him in the river and the sun went down and that baby was COLD). They didn’t have a car seat for him so I put him in my van since it has a built-in one that normally I wouldn’t trust but it was better than nothing. But it was a good time.

She eventually moved out into her own place with her husband and kids. We kept the bed we intended for her son because they didn’t have room anyway in their new place. Things were going great for them. Her husband applied for and been approved for disability income because he couldn’t hold down a job due to some health problems I won’t share here. Suffice it to say, he deserved getting disability.

Mind you, during this time I caught her in a few lies. She also had a problem with those energy pills… she’d abuse them. She took EIGHT one day when the dose is ONE. I should’ve seen this coming.

She had her ex-mother-in-law come for a visit one day and she was very nice. She even brought me some books to read.  That entire day was spent with her mom-in-law and I playing cards with Misti while she did laundry. Laundry is in the job description. The kids were with her again, as usual. But as I said I didn’t mind that. But they didn’t clean the front room before they left so my kids had to do it later as part of their chores. We had a good visit and after a few hours, they left (early) and I promised to clock her out.

Sometime after that, I think it was like a week or so, on a Friday, Misti tells me she’s quitting the agency and I’ll be getting a new PCA. I was disappointed because even after all that we were still friends. Good friends, I thought. Well, by the end of the visit (which was just her on the phone making personal phone calls cause I got free long distance, and playing cards and drinking my coffee) she told me she had changed her mind. She wanted to stay being a PCA because while they didn’t NEED the money from her job anymore, she needed the job for her sanity—to get out of the house. I asked her to make sure her boss at the company knew she had changed her mind. She said she would.

The following Monday, I got a call from her sister-in-law saying she had been in the ER the previous night from dehydration. I asked if she was coming that day or not (as I didn’t believe this to be true but rather that she was quitting after all). The SIL said “Well, if she does, she’ll be there. If not, she won’t be.” What the heck does that mean? How long am I supposed to wait? So, in the afternoon I called the agency.

I told the boss lady that I knew Misti had said she wanted to quit but that she had changed her mind but called in sick today after all. Before I could finish, she cut me off and said nastily, “What do you expect after you treat a PCA that way?” and preceded to tell me my PCAs are not there to clean up after MY kids, MY pets, and so on. She’s not a waitress to be bringing me coffee and taking my kids on errands with her, etc. I cried. I couldn’t even talk. I hung up the phone.

I called my husband into the room and told him what went on. I talked to my case manager and told her the truth-the WHOLE truth. It came down to that I don’t keep healthy boundaries. I needed to remember that my PCAs are there to work, not to be my friends. Okay, lesson learned.

Now whenever someone is telling me their life story and I see the same thing happening again and again, I tend to think “Yeah right. Always someone else’s fault and never your own. Why don’t you wake up and smell the coffee?? You can’t ALWAYS be the victim.”

Well, even as hard as it is to believe, and I’d have trouble believing this if someone else were writing it. But it happened again.

We met a new PCA. She seemed really good and nice. Knew her about a week and I started asking if her and her husband were interested in being roommates to help us out. Hubby said “Aren’t you kinna pushing it? Moving too fast?” I told him I was just feeling them out. We’d get references and such first. But it might behoove us to see if they’re interested since they didn’t seem to like living where they were living—with his mom and her boyfriend. Said his mom was always questioning their business, where their money goes, how much they got, etc. Didn’t think nothing of it really but felt kind of bad for them.

Well maybe a day or two later, after they had stayed for dinner with us and played cards with us after work, she called us and asked if we had room for them cause the husband and step-father got into it big time. I said, okay. It was snowing out. That was when we actually got a real snow storm. Didn’t mention dogs but they brought two dogs and a cat with them. I felt they were a good fit because they were kid-less. Should’ve made sure they were animal-less too. But, we let them stay the night otherwise they’d be in their truck in that weather. And he’s a big guy. I mean, big. No way. Couldn’t be that heartless anyway.

So, we had a talk the next day. Struck a similar deal. They donated food to the house ( we let them keep some for just them to buy their own snacks and stuff that we don’t like, etc). In exchange for living rent free he had to keep job searching as he was currently unemployed, and after work hours, she had to do extra work around the house WITH HIM.  They agreed. They took over the spare room. It was… cramped in there with stuff we were storing, so they cleaned it out. We went through it and the remainder we didn’t get to going through sits in our office to this day. Wow, we’re pack rats for sure!

We eventually loaned them a lap top that was old to use to play videos games on, job search, whatever. Also loaned them a TV and hooked up the extra box for their private use in their room, as well. To be  nice. Otherwise, they’d have to wait to use our computers and/or watch whatever it is was we were watching. After the way they acted while we were trying to watch O’bama’s State of the Union Address (talking the whole way through, rolling their eyes, etc), we decided it’d benefit us too.  That was not the original deal, mind you. But we wanted them to have all the comforts they could have and feel welcomed here.

We live in the county and do not get trash pickup. It had backed up on us and filled up our back porch area. Our burn barrel had well… burned. LOL It was beyond usable. So we asked if they knew what his parents did for trash (since they live down the street). They said they didn’t know but they’d ask. Well, not too long later, after running errands in our van for us, they came back and said “oh, by the way, we stopped in at Tractor Supply and those burn barrels cost $85 plus tax.” Okay, that was pricey! No big deal right?

Later that week, her and her husband went into Ft. Smith, A.R. just over the border, about 22-25 miles from here. Turns out, their tags are expired, he doesn’t have a license and he was driving (it was suspended for not paying tickets), and they had no car insurance (or truck insurance, whatever). So he got arrested for all that plus he had a warrant for his arrest… “Criminal mischief—Destruction of property.”

Well, my Pops loaned us the money to get a burn barrel so we could hurry up and get our porch back. We went to the Tractor Supply store and the manager there tells us they don’t carry them, not now and not ever and not likely to in the future. We went to the oil change place and got two. They were $4 each. FOUR DOLLARS. I think they were trying to scam us. What do you think?

Well, when we got back, we told her about the difference and that Tractor Supply manager (who’d been working there since it opened) told us. She said “Huh.” And that was it. We let it drop. Ain’t that some shit? That’s where that catch-phrase came from. I was shocked. Here it is… lie straight to my face, have your husband back you up in it, and when you get told the truth, all you can say is, “huh?” Ain’t that some shit! Funny thing is, by the end of their stay with us, even she was using that phrase.

Well, for the entire 18 days her husband was in jail, her day/night went like this: 1-6 a.m. she was on my computer playing Facebook games. She’d sleep until the middle of the day. She’d get up, sit in my comfy recliner and watch TV until about 10 p.m. or so. Then she’d get online and do something on her game. Then I’d get it back and she’d watch T.V. until about 1 a.m. and then get on and stay on all night until 6 a.m. again. Rinse and repeat.

There was ONE exception to this routine. One of her dogs is a pit bull. They get such a bad rap but it really is the owners who teach them to behave poorly. Ordinarily, they’re pretty good dogs. Jerry was loathe to let her (the dog) stay but he did.  The roomie lady spoiled that dog, even over her other dog. This dog could do no wrong. She’d yell at my oldest for correcting her dog. She claimed he didn’t do it right and she might turn on him if he doesn’t do it right. Well, Jerry’s thought was, if she has that potential, maybe she shouldn’t be in the house.  My thought was “So teach him or correct your dog yourself.” Well, one day, Thomas was in our office, on the floor, looking as his Wild ‘N’ Weird Creatures cards. The dog kept getting in his face, wanting to play. He kept saying the dog’s name and pushing her away from chewing on his cards. Finally, he’d had enough and yelled her name and pushed the dog away really hard. Unfortunately, right into the glass of our fireplace. It didn’t break, but still.

Both myself and roomie-lady saw what happened. She yelled at Thomas. Jerry yelled at her. His back was turned and didn’t see what T had done… but he yelled at her “Well, correct your dog then. Don’t keep yelling at my son!” Well, that pissed her off. She didn’t get it. The point was this: you won’t let him correct her when she misbehaves, then correct her yourself. It doesn’t matter what that dog does—she never corrected her when it involved my kids. If the dog chewed up something, or wouldn’t come to her, she’d spank the dog. I had bought a large animal crate and told her about crate training. After all was said and done that is. We agreed to teach T how to do it while I taught her. I don’t believe in spanking kids or animals!

But that whole day she was pissed off. Mumbling under her breath about being “nothing but a live-in maid” and how she would just stay in her room by herself with her dogs except when it was time to do her chores. She had put her two dogs in their bedroom (they need room to run-duh) and they would whine. She’d yell “Shut up dogs. You’re stuck in there. You’re not allowed to come out and BOTHER anyone.” Trying to make someone feel guilty. Don’t know who cause Jerry went to lay down and neither one of us told her she had to make her dogs stay in a bedroom. She did.

Her reaction, or over-reaction, should’ve told me something then, huh?

Little things like that would happen. Her husband wasn’t much better than her sometimes but in different ways. For instance… before she quit being my PCA (because it’s against policy for her to be our PCA, she quit her job, and took over nanny-care for my boys in the afternoon/evening…more on that later), she had worked at another client’s house one morning. Then she came here and worked five hours for us. Then she cooked dinner (if I recall correctly). After dinner was done, she was taking a rest on my computer, playing a game called The Sims. She had JUST sat down. I do mean JUST sat down and got the game to load. Her husband turned to mine and asked, “Would you like coffee?” He said “Oh I would love some” as it was already made. Her husband turns to her and says, “Get him a cup of coffee.” C’mon!! Even sillier is, she got up and did it.

Towards the end here, as I mentioned, I did ask her to stop being our PCA. She could’ve still been a PCA for the agency, but she couldn’t be OUR PCA. But I could tell she wasn’t really digging the job anyway very much. The agency she works for—well, let’s just say has issues. So anyway, she quit and her husband was to keep job-searching. He did put in a lot of job applications. We worked out a schedule where the kids would come home at 3:30 p.m. after school. She’d get them their after-school snacks (for us all really since that was part of our diet). She’d then have them do some of their chores. Bboy took out the trash if it needed it, and T did the kitty-boxes.  She’d then sit with T and make sure he did his homework. I was usually napping during this time because of my medication. Afternoons are the worst for me. 

I’d get up soon after and talk with my kids. Ask them how their day way, etc. She’d cook supper. I told her we HAD to be eating by six p.m. every night because my son’s bedtime is 7. Six p.m. was the latest because he also needed “evening snack” as part of the diet. He needed some time in between meal and snack, plus time to bathe, brush teeth, read before bed, etc. His whole bedtime routine takes about an hour in and of itself. Well, we kept eating later and later. One night, we didn’t start eating until 8 p.m.  That was on a school night!

I remember one night, Jerry got a bit pissy and went to bed because it was almost seven and there was no dinner on. She was sitting in our office watching TV. She got pissy back about being on a “clock’ and how she didn’t like it that other people would get mad at her but she was doing her best and she couldn’t do it all. I didn’t know what to say. I saw both sides. On one hand, my sons and husband need to eat on a regimented status, ya know? Their diabetics. Their health depend on it. For that matter, so does her husband! But… yes, at that point in time, she was doing quite a bit more than she had been. I’d need a day off too. But it blew over.

So, from 3:30 to about 4:30 p.m. she was with my boys.  Between 5 and 6 p.m. she would start cooking dinner. We’d eat between 6 and 7 p.m. She would then help Brandon with his bedtime routine (which, while appreciated, he didn’t really NEED the help. He could bathe himself, brush his own teeth and get dressed on his own. Who cares if his PJ’s were on backwards?) and put him to bed.  This routine also included chores which was picking up the ‘family room’ where Bboy hangs out during free-time playing video games. Boys also unload the dishwasher after supper  (from what the new PCA does during the day)and T burns trash for his nightly chores. She would then go into her room with her husband or stay with me in the office/living room to watch TV for awhile. Rest up after dinner. She’d then go into her room and go online for awhile. I’d not see her again until about 2 or 2:30 p.m. the next day. But according to Jerry, she’d come out at about 3 or 4 a.m. and do dishes.  All I know is they’d be done by time I woke up at six or six-thirty a.m. to get the kids off to school. And that’s how the day would go during the week.

Now, our agreement was that she would clean certain rooms in the house in addition to cooking supper and cleaning up after supper. She would clean her own room, wash her own clothes (in our machines of course), she would keep her bathroom clean for guests as it was a guest bathroom, she would help the boys keep their rooms clean and she would help the boys keep their playroom and family room clean. By help, I mean by vacuuming it as they’d pick up any messes on their own but they’d need dusting and vacuuming. Well, instead of doing that during the week every night, she chose to do it on Saturday. She could’ve done it any other day if she wanted to but she said it was part of her routine no matter where she was living. She’d get up and cook everyone breakfast and clean all day. So I said okay. I don’t care when she did it!

She did that for two weekends. These past two weekends not counting the Saturday I’m writing this. They’ve been here for… two months? Thereabouts anyway. And two Saturdays out of all those days, she’s actually done this.  The first Saturday she even cleaned out our fridge. I was impressed. Of course, our office/living space, dining room, bedroom, and bathroom weren’t done cause our PCA takes care of our living space areas.  Delicious breakfasts, too. Fattening and not good for diabetics, but tasty! She did take the day off on Sundays, as we all do to respect the Lord’s Day of rest.

Okay, so that’s about how it goes. Of course, there is the arguing. She argues more than my niece ever did! She argues more than a person with oppositional Defiance Disorder does! My word. She actually argued with a 41 year-old man who is our friend about who is a bigger slut. I swear to Gosh from the land of Golly-Gee!! Who argues about that?? Seriously? For one, he has 20 more years of getting-around experience anyway and for two… that’s what you want to be known for??

Then, she argues with our new PCA about who smokes the meat up at the BBQ place near our house. Even when the PCA says she has family working there, this girl continues to argue with her. She argues with me about legal stuff (and then has to admit I’m right), she argues with my kids! Of course, T likes to argue himself so they’d go at it all the time. Debating… bickering… whatever ya want to call it. They’re doing it.

That was one aspect of her personality that I couldn’t stand. You knew she was bullspitting you. You knew it. She knew it. She knew you knew it and she still did it. What the heck? When confronted with those types, I often let them talk to the wall. I don’t care as it usually doesn’t matter to my life. It’s usually about her past, such as where she’s worked, how well she’s worked for someone, etc. It’s all talk. I let it go. I guess that should’ve been a clue too.

Well, earlier this week, we had to tell them they had until the end of the month to get out. The problem is, if we have live-in help for our kids, the person or person could help us too. We’d lose services. Didn’t want that to happen! Nor did we want to take advantage of the ‘system’.  We were just trying to help out some people and ourselves in the bargain.

Well, sometime this week, she mentioned how she’s not trying to make nobody happy no more cause she can’t do it and they’re gone at the end of the month anyway, and she needs to spend her time searching for jobs and somewhere to live. I let the comment pass as it wasn’t technically directed at me but at her husband. They were in our office area.

My husband suggested a certain management company that rents houses and apartments in this town. That’s when we were informed “oh, we can’t rent from them. We owe them like $5,000 in damages from when me and my old roommate trashed the place cause they were evicting us. “ My jaw dropped.  Here’s why.

The criminal mischief/destruction of property charges? They told us they stayed in Fort Smith and had a slumlord of a landlord and the place was falling apart when they moved in. She said the landlord was claiming damages for what termites did to the doors (which she claims they told him about) and damages that weren’t them, such as graffiti on the wall. Well, it came down to her husband being held legally responsible for that stuff because his name was still on the lease when the landlord claims he saw the damage. They never gave notice; they never took their name off the lease; they just left, according to them. According to them, they let a roommate stay one more day and HE did all the damage. They were letting him stay there even though they knew he had a drug problem, etc. and that he did all the other damages they were now holding her husband responsible for.

And now, come to find out, yet ANOTHER apartment got damaged? She CLAIMS there were issues with the apartment and they withheld rent until the landlord fixed the problems. But, instead of fixing the problems, they were served with a ten-day notice to quit.

I know this area of the law—especially well. Some parts due to my sister who worked in this area for non-profits and organizations protecting tenant’s rights. Yes, you can withhold rent if there are problems that the landlord is responsible for and not fixing. However, the rent MUST go into an escrow account, and then if you get served with eviction papers, you go to court and prove you wrote to the landlord about these problems BEFORE withholding rent and that you notified the landlord BEFORE withholding that you would be doing so and why. And you better have that account statement proving you have the money in an escrow account.  If the judge finds in your favor, the landlord has to fix up the place and you can stay. If he doesn’t, you have to pay all that rent anyway and still move out.  That’s the way it usually goes by law. Sometimes tenants are fined; sometimes the landlords… but pretty much cut and dried. She tried to argue with me about this!

So, now I know what happened to that first place!

Well, yesterday, they left to go to court for him on those charges.  They came back after the kids had gotten home, shortly thereafter, about 4 p.m.  I had already started the boys’ afternoon routines (chores, homework, exercise outside, etc). It was challenging for me because I had to skip my meds which keeps chronic pain away in order to be up to do this but his court date was important.  They were in their room and I noticed I had taken our status on the internet down to 32%.

We have satellite internet. We only get a certain amount of internet per day. MBs worth of uploads and downloads. Every time you open a page, it’s uploading/downloading internet. That costs us status. We have a meter on all the computers that tell us what is left for that 24 hour period of time, except for the lap top we loaned them.  

I have a download manager for a game and I had accidentally un-paused it and didn’t notice until I saw the status. I sent my youngest to go tell them that the status was 32%. Katie came out to apologize for using so much and I explained to her that it wasn’t her or him but that it was me and what had happened. She realized the time and ended up starting dinner. It was around 4:30 p.m. A good time to start! I was quite pleased actually. Was afraid she wasn’t gonna keep up on her end of the bargain cause she knew I was mad at her from the previous night’s disaster and her earlier comment about not going to work so hard to please other people.

You see, she ruined another pot of mine. A $45 pot of mine. This after her husband ruined our $65 toaster… by trying to cook a grilled cheese in it. And she had almost ruined another 10 qt dutch oven pot of mine  the week before. And then another pot on Thursday night/morning.

See, the week before she was gonna “show me” how to cook Mexican rice (is that different than Spanish rice?).  She was gonna one-up me on the Spanish rice dinner I made the week before that. I ran out of Sazon seasoning and didn’t use enough so it came out a little blander than normal. Sue me. It happens.  Well for some reason, her rice wasn’t cooking. We were waiting for HOURS. Turns out, we later learned, that she was using whole cups instead of half cups measuring cups. Well, she gave up on it and had gone to her room and the rest of us had sandwiches that night. It happens, right? Well, later on, I noticed she forgot to turn off the burner! Burned rice right into that pot! We had to soak that pot until I washed it tonight (Saturday night).

Now, Thursday night, I don’t know what she was trying to make, but Jerry told me she put cheese in the bottom of my non-stick pot, turned on a burner and went into her room and didn’t come out until the smoke filled the air. She burned my pot beyond fixing. I had to throw it away. I swear, I thought she did it on purpose. Who puts cheese in a six quart pot, turns on the burner, and walks away? What was she trying to make? Nothing else was in the pot apparently. WTH??

But yes, when I woke up that morning, I was upset about the pot. I was running out of pots and no money to replace them. But I wasn’t THAT upset about the dang things. They are just things after all. Oh yeah, her dog also chewed up my husband nebulizer cord so he has no way to do breathing treatments and right now we think he has pneumonia. Not good. Also, my son’s biological father gave him a GameCube the week before he died. Their dog chewed up the cord on that, too :-/ As I said though, these were just things.

Now, before her husband went to jail they would often use up all our internet status. To the tune of $75 on last month’s internet bill for example. Tthose restore tokens are expensive after awhile!! You can purchase “restore tokens” for $10 each or 3 for $25. The company does give you one free token a month. We warned them that if they did it again, they’d have to pay the $10 to restore it. This was before she quit her job.

Well, my son sat down at my computer about 5 p.m. and said “oh wow, we’re restricted!” I was like, “what?” and Katie was in the kitchen cooking, heard him, and came in and asked too. I told her “Go tell him (meaning her husband) to get off the computer, now.”  Well, we checked our company’s website and got the time it went over status. None of us were online at that time. I was in my recliner doing my mending; she was in the kitchen cooking, my youngest was in the play room playing video games on a console that does not even have access to the internet, and her husband was in the room when it occurred. Katie later claimed that when she “barged” into the room, her husband wasn’t even on the computer.

After dinner, she returned to their room. My husband got our internet restored. He told me he planned on restricting access to the internet via the router to that laptop because he was sick of this going on. I asked if he planned on telling her, and he said he would. She came out of her room later to make brownies for dessert. She wanted to wake the boys up so they could have some. I said no, because people with autism need to stick to their routines. No matter how late they stay up, they’re going to get up at the normal 7 a.m. and then being unmanageable the rest of the day. She understood and asked “Can I feed it to them with breakfast?” I laughed and said okay.

I went and laid down for awhile. When I got up due to night sweats, he told me that she had come out and asked if the internet was working and he told her he restricted them and why. That if it made her feel any better, he also did it to my son’s computer as well that’s in his room. She told him that was unfair.

I thought everything was okay but as she was cooking something in the kitchen and I went into the kitchen and she said “I really think Jerry’s being unfair. He’s punishing me for something I didn’t do.” I said “I don’t know what to tell you. I know WE didn’t do it.” That’s when she told me her husband wasn’t even on the computer when she went in there and if he had been, he’d have been busy clicking things closed. He was on Real Player which had already downloaded videos to it and doesn’t take internet status at all, she’d told me. I kind of shrugged it off as “Don’t know what to tell you.” And went back to lay down.

I noticed the computer on the table. He told me how she’d reacted—not kindly. She had brought the laptop out because they might as well not use it since they could only use it after 1 a.m. (during free internet access time) and they go to bed at 2 a.m. Jerry had asked her how could she when she’s up doing supper dishes at 4 a.m.? She went storming in to her bedroom and a few minutes later came back out and accused my oldest of stealing her last $10 out of her wallet.  We’re talking minutes after her finding out and not getting the restriction lifted, all of a sudden… my son stole her money. She demanded, and I complied, that we wake my son up and ask him if he took her money and to search his room. Of course, we didn’t find it. She claimed her husband had caught my son in her penny jar before but she didn’t tell on him because it was only pennies, after all. Thomas, my son, told me that never happened. I believe him.

She returned back to her room after her $10 didn’t turn up. I had Jerry hook up the lap top. I checked all the machines in this house. All of them. I was able to ascertain that at the time the status went over (from the hour before to the hour after) no one was on any of those  computers online. I tried to do that with the lap top but the settings were set to delete after exit. So, couldn’t check that one for definitive proof-but as process of elimination—if the other computers have history and it doesn’t show—it makes it more possible that he did in fact do it. Right? Right.

I went to bed. I woke up at 11:30 a.m. or so this morning. She was in the kitchen, cooking eggs. It was just for her and her husband, Robert. Nothing for us even though it was Saturday and her “routine” to do so. No biggie.  My kids had had their cereal. My husband and I went hungry. We do that a lot when we’re not feeling well. Jerry, who was already awake with the kids since I get up early M-F with them, told me she must still be pissed off cause she hasn’t said a word to him and stuff. I said “whatever.”

At 1:30, two hours later, she comes out and cooks them lunch. Burger patties. Greasy, nasty things to make! But I was surprised cause they had just ate. She still hadn’t cleaned up last night’s dinner dishes and here she was, making more, for the second time that day. I thought, “Okay, she wants to make a point.” I told my husband she was making lunch now and also informed him if she STILL doesn’t do those dishes, I’m going to speak up to her and if she didn’t like I was going to tell her to leave, in not so nice words. He agreed.

Apparently, my son T was eavesdropping and heard me say that to him from our bedroom door. I didn’t know. He then went into the kitchen and said something to her while she was cooking.  I was sitting in my recliner, relaxing after having done some laundry, and standing up talking to hubby. I was wore out. My son said something along the lines of “I think my mom would like it if you’d clean up after yourself today” And she replied “I’ll talk to her about that and besides, I don’t do shit for people who treat me like shit.”

First all, don’t swear while talking to my son. He has a bad habit of his own with those words that you KNOW I’m trying to curb him of. Secondly, you should’ve stopped at “I’ll talk to her about that” and been done with it. He doesn’t need to be involved, even if he did involve himself.

I started coughing somewhere in there and didn’t quite hear everything. I had a really bad coughing spell and couldn’t catch my breath. I got up and went to my desk to find my inhaler. My husband must’ve heard me because he also came out to check on me. My son came over to me. I asked Thomas in writing, sicne I couldn’t stop coughing, if she said blah blah blah (I wrote it out as above). He said “Yeah, she did” and nodded vigorously.  I then wrote to my husband and told him what had transpired. At some point, she had come into the room and stood in front of my recliner, putting it between her and I.

She said, “I don’t think I’m being treated fairly. I work my ass off for you, taking care of your kids to the best of my ability, and I don’t think it’s right of you to punish me for something I didn’t do.” My husband tried to explain to her again what was going on. It wasn’t to PUNISH her. She’s not a child. We weren’t taking away privileges to punish so much as we were protecting ourselves from an internet bill like we had the last month. We *are* on a fixed income after all.

Well, Jerry couldn’t get that out though. She kept talking over him. She talked over me. Finally, she said “I feel y’all are taking advantage of me and Robert…” and that’s when I lost it. I totally lost it. I open up my home, ask her to work 2-3 hours a day, and *I* am taking advantage of HER? Really?  I said, and I quote, “Well, if you honestly feel that way, grab your stuff and get the BLEEP out.” I said a few more things that I don’t recall so exactly but basically gave it to her. Told her she’s lied to us, we know she’s lied to us, I can’t trust her to tell the truth, and she needed to get out.  Now.

So, she did. She packed them up. By this time, our voices were raised and her husband had come out and sat at our dining room table, which he could see us from there. There’s no walls in the way, in other words.  Jerry told him what had been going on, what the argument was about. Robert said he’d go talk to her since she’s obviously overreacting. Well, apparently that didn’t work because they left anyway.  Jerry did go tell them that if there was any damage like they left in the last place, he wouldn’t hesitate to press charges.  But we left them alone to pack.

I came to my computer and put up a status about all this. I was beyond mad. Jerry was shocked at how mad I was and if the WHOLE truth be told, if I was physically able to, I would’ve decked her in her face for saying WE took advantage of her.

That internet usage was NOT part of the agreement. The laptop and TV was NOT part of the agreement. We could take it away any time we wanted to or not have given it to her in the first place. I had already told her the previous night that Robert could use my computer to search for a job during the day. The only thing we asked was that during the status time was that they use one of our computers in the main living area so we can keep track of who was doing what when. I still don’t think that was unreasonable of us. I really don’t.

Oh and the taking advantage of? Mind you, they didn’t have jobs, okay? No income whatsoever. She had had one more paycheck after they moved in, and they spent it on doggie grooming stuff and other junk.  They’re smokers. Guess who supported their habit? You betcha! I did only buy them roll-your-own tobacco and filters though. Can’t afford anything else! But she would bum cigarettes off of me if I had any store-bought cigarettes. Even if it was my second-to-last one, she’d still want it. They had use of our vehicle, since there’s wasn’t legal. See, it turns out the person who sold them the car wasn’t the legal owner.. . always someone else’s fault, never theirs.

You know, there were lots of things that we did for them, big and small. And I have a huge heart. I love helping people. I get a kick out of it if ya really wanna know. It makes me feel good to make other people feel better. I can’t explain it. It just does a heart good to be kind to others. Yes, I got some benefit out of it this time. I don’t think there’s anything wrong with that. I thought it was a fair enough deal. And we were going to let them live rent-free even after they got jobs, if she kept helping. Just so they could save money. I didn’t think we were being unreasonable in any of our requests. We didn’t push her when she didn’t do a dang thing for 18 days. We didn’t push her in any sort of way really, until we put our foot down that is, about the internet. And the time we pushed her about not letting her dog rule our house. And both times? She overreacted.

After they left, she called from his mom’s house. She asked if she could return for their vacuum or I could pay her for it. I said she could come and get it any time. I didn’t care. I hung up on her.  When she got here, she tried again talking to us. Or Jerry tried talking to her. I’m not sure as I was at the dining room table, folding laundry, and pointedly ignoring her. If I didn’t, I was afraid I couldn’t keep it together and not wail away on her. I was trying to be an adult about it all. Trying, I said, trying! I was still quite upset, ya see.

She said what she was mad about was her missing money. Jerry reminded her we didn’t take it. She said, no she wasn’t saying that. She was saying that maybe our YOUNGEST son had taken it out of her checkbook, out of her wallet, and played with it and lost it. He’s got a more severe form of autism, and yes, if he found money lying around, that is something he would do. NOT if it was inside a checkbook flap, inside a wallet. He doesn’t go through things. That’s not his way. Jerry tried explaining that to her. Then she said “No one was remorseful that our last $10 went missing!”  *jaw drop*

No one was remorseful? You weren’t remorseful when you ruined two pots. You weren’t remorseful when your husband tried to use a toaster (not a toaster oven) to make grilled cheese. You weren’t remorseful when you removed the finish off of my ceramic stove-top by scrubbing it with a Brillo pad because supper spilled over because you weren’t paying attention. You weren’t remorseful when something my son’s dead father gave him got ruined. You weren’t remorseful when my husband’s breathing treatment machine was ruined. You weren’t remorseful that you ran up our phone bill accepting collect calls from your husband who was in jail. You weren’t remorseful when your husband kept using up our internet causing us $10 a pop. You weren’t remorseful about crap. Why? Because it was never your fault, right? That’s pretty much what I said to her then although a little more poetic now. She took her vacuum and left.

The previous Monday to all of this, a therapist told me some people with Autism get easily taken advantage of. He felt we were being taken advantage of by our roommates. That perhaps I should have listened to Jerry about them as he was uncomfortable with this situation from the start. He told me I should trust those around me who love me and treat me well when they say something isn’t right about a situation. I may think I’m smart; and I may be book-smart, but I am not street-smart.

He said people like me, people with autism, often have a big heart and good intentions but often find themselves in predicaments because they are not good judges of character. We have a tendency to see the good in everybody and always want to give them a chance, and second chances. And third chances. There are people out there without autism who are like that, too, but he has found in his time of working with those with autism, that most of those he treats have that problem.

I have learned my lesson. Again. I won’t say I won’t ever help a body out again. I’m just not like that. But I will listen next time when my husband, or my father, or my friends, or my other family members tell me I’m making a mistake. I’ll at least take the time to consider that they just might be right and I might be wrong. For once. Well, I may not always be right, but I’m never wrong.

Tonight, after I finished cleaning up all those dishes (took me hours), I got a call. Caller ID said it was the Motel 6 here in town. I answered it. It was her husband, Robert. He said Katie had left to go get ice for his foot, and he wanted to call and apologize for his part in it. The using of the internet. That took us over our allowable status. I told him, we didn’t really have a problem with him at this point. It wasn’t him screaming at us that we victimized him, after all. That was what our problem was. He said he didn’t want to burn any bridges with us. He wanted to remain friends with us. Another friend of theirs paid for their hotel room for a couple of nights.

He said that he had told Katie he wanted to remain friends with us but that she said “Fine. Do whatever you want. But I’m not. They took advantage of us.” He also said she told him when she came to pick up the vacuum cleaner, that we threatened to take her to court for the damage to our floor and the above-mentioned damage to our things. The word “court” never came out of our mouths. Not once.  I told him that.

I also said, that I knew she had done damage to the apartment that he went to jail for, just like she did the one she told us about here in Sallisaw or wherever it was. That she’s going to continue costing him friends and his relationships with his family until she gets psychiatric treatment. She knows she has a mental health problem (she told me the name of the one she was diagnosed with), and he knows it too. The proper thing to do was to get her to a shrink and put her on meds for it. Although, I wasn’t so nice in the way I phrased it to him. I’m not a big advocate for medication for any problem. But there *are* certain mental health issues that one just knows that needs medication as well as therapy to treat. She has such a one.

He agreed with me and then had to go cause she had come back into the room with the ice for his foot.

You see, early in the day today, sometimes between their breakfast and lunch, he had fallen through our kitchen floor’s soft spot. We all knew it was there. Anyone that comes in to our house, no matter how many times they’ve been here before have been warned about that spot. We haven’t been able to get anyone to fix it yet. So, we warn people not to step on the soft spot. I guess he stepped wrong and stepped on it and fell through the floor. He hurt his foot doing so. I feel sorry for the guy.  I’m sure that had to hurt like crazy.

He later called back. He asked if I knew where they should go for emergency housing. I told him Monday morning go to the local DHS (Department of Human Services) and tell them at the window that he and his wife are homeless and need shelter. They should be able to help him.

I sit here and shake my head. I have no doubt she put him up to that call in an attempt to guilt trip us. I have no doubts whatsoever. She often does that to get her way. She makes the person she argues with feel guilty in an attempt to get her way. I’ve seen that before. I recognize it easily. It isn’t going to work. They aren’t going to smooth this over no way no how.

They would’ve had to move out anyway. I’m just glad now that it was sooner rather than later.

And, I may not always be a good judge of character but if Jerry and I ever consider roommates again, I’m getting references.