Posts Tagged ‘life’

Self-diagnosis is just as valid as formal diagnosis.

Not too long ago, someone decided to go through my Tweets on Twitter (why do you do this to people you claim not to like? I only read what you have to say because you insist on mercilessly doing it to my friends, screenshotting everything they say that you may not like… I’m surprised no one really turned the tables sooner) and feign offense to me making reference to being autistic. Professionals in the field have repeatedly stressed that self-diagnosis — or in my case, diagnosis by way of Internet and many autistic adults repeatedly telling me that they are sure I am autistic — is valid, because there are many barriers to adult diagnosis and diagnosis in general that might make it so someone never formally pursues a diagnosis. In my case, I feel that I don’t need additional accommodations or supports for being autistic that I can’t already give myself, and I do not reject the opinions of the many autistic adults that I have spoken with over the years that have told me that they see me as being autistic as well. This has been something that has gone on for years, which the person who feigned offense at one particular mention of it on my timeline would have known if they had gone through more of it, but I digress. Growing up, my mother — my primary caregiver because of the sort of work my dad did — was repeatedly told that I was neurodivergent, but among many other things, she refused to permit it to be worked up. Were it not for the fact that she literally neglected me as a child (I was fed and clothed, but not much else), I would have been formally diagnosed.

I find it amusing that when things these people — members of the Supernatural fandom, which is why all of this stays online — take alleged offense at (“she drugs her kids”, referenced in the post that I made about Bub’s medication regimen recommended by the whole of his care team, this) or the fact that I do not dispute what many autistic adults have told me, they stop talking about it. I also find it humorous that they do not appear to be frequent readers of my personal blog (I have a tracker, but it’s not specifically for that purpose), instead choosing to block me on Tumblr and gloat about it… when I only use Tumblr because friends of mine have accounts there. I reblog a few things in the morning, read individual Tumblr accounts of friends of mine who regularly write, but I seldom compose blog posts in there. But this is why fandom stays online for me.

Prednisone has claimed its 666th casualty here, y’all.

As most of you already know, I was put on prednisone because of breathing difficulties. We’ve tried to lower the dose and make it less frequent over the… months and years that it has become increasingly more problematic, but for me it seems like the side effects have drastically been outweighing the good things that it does for me to the tune of reconsidering whether or not prednisone is a viable medication for me to take.

Well, in spite of using mouthwash one to two times a day and brushing twice a day, I managed to get a sudden gum and jaw infection. As it became increasingly more uncomfortable, I began drinking soda and water from straws and sticking to softer foods like chicken noodle soup and ramen (that Bub doesn’t lovingly steal from me because now he loves ramen). Because it came on within a day and a half of starting prednisone once again for something that was very necessary, it was — as it should have been — attributed to prednisone. So now I am on two antibiotics meant to make it go away and fast so that I can resume eating more normally and so the infection doesn’t, well, spread. You know, since I’m immunosuppressed…

At any rate, I also learned something else: that people have read my blog well enough to know that Bub is on Mirtazapine at night to help him sleep (which it does a beautiful job of, by the way, since he was clinically diagnosed with insomnia at age two), and Risperdal during the day to help decrease the violence of meltdowns and to stabilize his mood (and that works really well given where he was at when all of this… escalated to the point that he needed medication, which quite likely could have been kick-started by adolescence). Apparently they have some opinions on this, claiming that I “drug my kid(s)”. And although it’s kind of adorable that they read through my blog well enough to figure out that he’s on two different necessary medications prescribed by his care team, what would they rather me have him do? Be miserable because he can’t sleep? Cry because he can’t sleep? Quickly, and wildly, oscillate between moods and have meltdowns that hurt people? It sure seems fun for people to point fingers about how I supposedly “drug my kid(s)” when these are both medications recommended and prescribed by his care team, consensually taken by him every morning and evening. Sadly, this goes right back to the fact that even in 2022 (which has just barely started and already, people are wilding out for no good reason), people continue to medication shame and pill shame, which does nothing to support those with mental health illnesses… least of all actual kids.

If you’re jealous that Bub is clearly living his best life over here, by all means, just admit to being jealous.

That went a lot better than I thought it would.

I did the same song and dance that I’ve done with HHSC since 2014, whereupon for some reason the boys’ child support cases would be referred to the child support office for enforcement in spite of the fact that Monster’s child support order has had a good cause waiver on it since custody was finalized, barring the two weeks in which enforcement efforts were taken because of a screw-up that probably got someone fired, and the fact that I was literally never told that I could request one in Bub’s case until 2014, which would have completely bypassed a custody, support, and visitation order being drawn up to begin with. (More to the point with Bub’s child support case and everything else related to it: I was told that if I “didn’t comply”, we would lose some of the benefits that our household gets. I was never informed that I could have claimed good cause since the start, continue to get those benefits, and not have to cooperate once it was approved.)

However, when told that Bub’s good cause waiver “wasn’t approved” by the chief ombudsman (although I had originally been told by a representative that both waivers were approved and quickly got the impression that this was not something I was supposed to know, that HHSC and the child support office were merely choosing not to honor my youngest son’s good cause waiver in attempts to enforce the child support case of his that never should have been drawn up to begin with), I began leaving comments on their social media pages. I began talking about what was going on, which ultimately drew the attention of HHSC because I was frequently using phrases like “endangering my child” and “endangering my family”. I decided that it would be worth my while to lodge a daily complaint on the child support website against the chief ombudsman who insisted on leaving a potentially unsafe case open for active enforcement, then going so far as to send messages over the child support website stating that I was no longer comfortable with her involvement in my children’s cases. I sent a few more internal e-mails about… why this was even happening to individuals working for HHSC that had helped out when this had happened in the past. Along with filing a formal complaint with the HHSC Ombudsman every single day, I filed a complaint about Bub’s case on the Federal Child Support Agency’s website (or whatever the specific name of it is). The squeaky wheel was going to get the grease or a lot more people were going to know about this. And I contacted Legal Aid again.

I made it clear that if I was going to have to litigate over this, unless I couldn’t (I did STEM prior to the onset of disability, not law) that I wanted to be compensated in the form of all of the arrears on Bub’s child support case or the maximum that you can get from a civil case. Maybe assigning a dollar value to it helped out…

At any rate, imagine my surprise yesterday afternoon when I get a call from someone at the HHSC Ombudsman’s office stating that Bub’s good cause waiver was being upheld, that enforcement would immediately cease on the case, and that we had nothing more to worry about as it related to HHSC and the OAG potentially jeopardizing us. (Now all I have to do is actually get disability for myself someday, don’t I?)

’round and ’round we go again here, I guess.

For some reason, after our SNAP renewal the state has seen fit to refer Bub and Monster’s child support cases to the OAG (Office of the Attorney General) again… in spite of the fact that good cause waivers exempting them from this benefit requirement were approved for both cases as of May 2021. I’m not sure why this continues to happen like clockwork as it mysteriously has since 2014, but I’ve been initiating closure requests on both cases since they opened and will continue to do so each day. I also e-mailed the contacts that I have from HHSC and the OAG, and I’ve made sure that there is a paper trail of me not having revoked either of the good cause waivers. In addition, I submitted a formal complaint to the HHSC ombudsman. The last time that I had to do this, I was in the process of acquiring a lawyer through Legal Aid to litigate. As soon as HHSC and the OAG found out that I had done this, they immediately put both cases back into non-enforcement where they stayed for several months. I’m merely chronicling this here to attest to the fact that it has once again happened, it continues to periodically happen in a problematic way, and I want it to stop.

This might be our largest jump this pandemic.

And this is due to the Omicron variant, which is said to be able to sidestep immunity from vaccination.

Because no one would quarantine or will mask and socially distance unless they have to, I think we’re going to spend a lot longer in this pandemic than we should. And then there’s the whole matter of people not getting vaccinated who are able to get vaccinated, making things worse. “But it has a 99.2% survival rate!”

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