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Posts posted by AimeeM

  1. I used to describe him as my best friend, but I don't think the description is entirely accurate. He is my "closest person." I talk to him about everything, really -- even things I wouldn't talk to my best friend about. We talk about the most serious of things and the most mundane of things -- and the itty bitty things of every day, and because he's my Closest Person, he "gets" those itty bitty things in a way that only a person who is entrenched in the same, could.  


    I didn't say it well. 

    • Like 4
  2. I like most of it. We do not "do" the art cards as suggested in the enrichment, though (we use those with morning meeting), and we skip the poetry almost entirely right now. What I like the most about it is that it's flexible. I'm adjusting the Grade 1 right now to fit my special needs' boys.

    • Like 1
  3. Check all your personal info, first of all, to make sure you didn't get hacked. Barring that, did you try to access your account when you were out of the country? There's some strange reason why it thinks you're living abroad.

    Just did. Everything looks fine. 


    The last trip out of the country my husband took was to Germany -- well over a year ago, and he didn't try to use Audible when he was out of the country; we've only been having this issue the past few months. Nobody else in the household has ever traveled outside of the country. 

  4. First, we've been using Audible (with no changes to our account) for years. As of a few months ago, we haven't been able to add any new books, and our credits (which we pay monthly for) expire, so we are paying for a service we have no access to. The error message we receive is that the title (every single title we click on) isn't available for purchase in our country. We're in the United States and always have been. 


    We called customer service months ago and they "opened a ticket" to investigate. I'm on the phone with them again (now) and when they checked the ticket, no progress had been made to resolve the issue. 


    Anybody else having this issue?

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  5. I am so sorry for your mom caught in this gap between folks trying to do something, the ones abusing,  and the ones who need opiods who are caught up in the middle of the battle.


    A complete aside, but has your mom ever had anyone talk to her about Rituxin / Rituximab?  I have a dear friend who has very severe RA and it seems to be working for her after nothing else has.  They are giving me a trial run on it in the next couple weeks to see if this is SPS and if it works for me.  It suppresses the immune system, but since hers seems bent on trying to kill her, ya know.  


    There was one medication she was on (not sure if it was this one) that works really, really well for her -- but it was very new to the market and very expensive (her insurance / medicare wasn't covering much of it; it may have been considered too new and untried at the time). 


    The meds she's on actually seem to be doing a great job. A major part of her problems come from having the RA and the Lupus and the OA (and thyroid issues -- she's been having masses taken out over years, but they can't seem to get it "controlled"), and I'm sure some of the standard gold treatments for one condition may do the opposite for her other conditions. She recently moved to FL and her new home has a pool, which has done amazing things for her pain. 

  6. Interesting idea -- but the majority of people (myself included) I see giving to panhandlers on the sides of roads and highways, give cash, not coins -- cash not only doesn't weigh enough to do this with, it would also blow away easily if left in an open container. Typically, when I give cash to someone on the road, they stuff it immediately into their pocket and walk to the closest gas station or fast food restaurant. 


    ETA: I don't give a flip if they are scamming me or not. I'd rather take the chance that they sincerely need what I give, than walk away believing that everybody is a potential scam artist. Some of the obviously homeless folks I've seen in the downtown area of our relatively small town are so broken that they've given up even asking for money. I had a man turn down a $20 because he sincerely believed there was a catch to it or that it wasn't real. I'll never, ever forget those eyes. When I think of the word "broken," I think of him. He was elderly and smelled, and was just sitting there crouched, trying to look as small as possible, on a bench outside a dozen wonderfully fragrant restaurants. I stooped down and tried for a solid several minutes to convince him that I only wanted to help, but he didn't believe me. He didn't believe anyone would want to help. I finally just told him that I was leaving the bill on the bench beside him, I said goodbye, and I left. I'm all for whatever gives people a chance to feel better about their situation -- whether it's an option like the article mentions (although I don't see it being an option in our area, since most panhandle on the interstate off-ramp), or that they buy beer with the money I give them. Whatever. 

    • Like 1
  7. Does your mom's state have a database that tells doctors and pharmacists how many Rx's she's had, etc.? I am sure that it can still be a pain to get drugs here under some circumstances, but both the providers and the pharmacists here can use that database vs. having to go on their own "judgment" to decide which Rx to give or fill.

    I'm not sure if there is a state database. 

  8. Yes.  This is possible.


    What the pharmacy sees is that she attempted to fill an RX for hydrocodone.  It was refused to  and she went to a dentist for the RX.  Dentistry is hit hard with drug seekers.  I have seen legitimate tooth infections that patients were using to get multiple RXs.  One day, a person hit up several local dentists in a town on a Friday. Our office was one.


    Now, you know that is not what is happening here.  Pharmacists have heard every story in the book.  And much of the heat from this epidemic is on their shoulders.  


    I'm so sorry your mom is hurting.  It breaks my heart that rules to save some end up hurting others. :(

    The first hydrocodone prescription refused was written by her MD -- it was meant for occasional use during flare ups when the tramadol didn't "cut it" and had nothing to do with dental-anything. The last time she'd had the running script for hydrocodone filled, it lasted her over a year. This was weeks prior to her seeing the dentist. The second time (just a couple days ago) was the dentist wanting to write her a script for pre and post-op dental pain for hydrocodone. 

  9. She can't take any ibuprofen or aspiring products for this week leading up to her dental surgery, as per her PCP's nurse. 


    To the best of my knowledge, the wording from the pharmacist was that he would not fill the hydrocodone because she is on "pain management" (the tramadol). I advised my mother to have her PCP or RA specialist call the pharmacy directly, if she decides not to find another -- smaller -- pharmacy

    I totally agree with you.


    And I have had some similar issues, as does another relative.



    Other than to sympathize and hope you can get some help for her with her opiate Rx, the only thing I can offer to you is that I found that Goody's powdered pain relief formulas have been able to give me some pain relief over-the-counter.  They seem to work better for me than over-the-counter tablet forms of analgesics (I tend to prefer the "Cool Orange" for daytime and the Night Formula for night--the day formula has caffeine, while the night one has something to help sleep and no caffeine...there is also one with no caffeine.  If they are not contraindicated for her various conditions, you could maybe get that overnighted to her from Amazon as a start toward taking the edge off of the sobbing pain, while fighting with pharmacies.  I've not used this for tooth infection pain, but I know someone who did and found it less wonderful than hydrocodone, but a significant help.  I did use a similar thing for a post oral surgery and it worked fairly well.


  10. I'm sorry.  I have RA, so I have some idea of what your mom is going through.


    The pharmacists are over-riding prescriptions because some people are trying to get more pain meds than they should be visiting different doctors and getting multiple prescriptions.  I would call the dentist and see if he can just give her a sample of whatever pain meds he has in stock to help her.


    Or perhaps you can take the prescription to another pharmacy.  Truthfully though, I would be cautious.  It is possible that whatever combination of meds she is taking would not be a good fit for what the dentist prescribed and the pharmacist picked up on it.  


    I am sorry that your mom is in so much pain.  Sending hugs and prayers.

    This medication (from the dentist) is the same as the one her RA specialist wrote for her (which the pharmacist said she could only fill one or the other of -- not because of interactions, but because of "managed pain"). There are no interactions, as she wouldn't be taking the different pain medications at the same time. She wouldn't need her low-dose Tramadol while she took the dental post-op hydrocodone. 

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  11. That would be a red flag to me, and I would possibly take all her prescriptions to a different pharmacy.  After I spoke to the pharmacy manager and threatened to turn them in to the medical board for practicing medicine without a license. 


    When they've had enough of an opiate prescription problem that they are regulating routine dental prescriptions, I'd wonder if the pharmacy as a whole doesn't have too many issues to deal with.



    ETA:  Can you call the dentist emergency number and ask them which pharmacy gives the least trouble in the area?

    I suggested she find a small, local mom and pop pharmacy. 


    We use one here. A tiny little one-man pharmacy (well, he has a tech, too). They are awesome. They have this really ingenious policy that if they question a patient's prescriptions they... get this... call the prescribing doctor to clarify. 



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  12. I do (I really, really do) understand the ideal behind pushing back against the amount of narcotics / opiods prescribed. The application, however, sucks. 


    My mother has Lupus, advanced Rheumatoid Arthritis, and Osteo-arthritis. She's also had several strokes. It's robbed her of what should have been her best years. My youngest sister is about to move out of her home, with her fiance and their children, and we're going to have to hire an in-home aid -- for my 51 year old mother. Twice now she's fallen trying to get out of the bathtub on her own, and had to wait hours for my sister to get home. Her legs swell to the point they more closely resemble solid, pale logs than they do legs


    She's on a low dose chemo medication for the Lupus and a variety of other medications -- but only one "opiod." A very small maintenance dose of Tramadol. It's a "geriatric" dose as it is, because she's a fall risk and because she wants to be coherent during the day, as she has grandchildren in and out of the house. 


    Well, right now she is sobbing and in a ton of pain due to a tooth infection. She went to have it looked at and it needs to be extracted. ASAP. However, one of her regular medications could cause her bones to be more frail (or something to that effect), so they have to do blood work first, which will take a week to get back. In the mean time, the dentist gave her an antibiotic. He tried to prescribe her a heavier painkiller (while they wait for the blood work and for after the procedure), but the pharmacy will not allow it because she has the GERIATRIC dose of Tramadol, meant for yucky, but manageable pain throughout her every day -- not at all meant for severe dental pain or dental post-op pain. 


    In fact, her GP had given her scripts for both low doses Tramadol and Hydrocodone (the Tram for regular pain and the Hydrocodone for during flare ups), weeks ago when she went for a check up (her RA specialist, I believe), but the pharmacy told her she had to choose between the two. She willingly chose the Tram, because she functions better on it. At that time, she didn't think much of it. She has other methods for dealing with flare-ups, so it wasn't a huge deal.


    It's obvious she doesn't abuse the meds. The last prescription she had filled for Hydrocodone, despite her doctor offering it, lasted her well over a year (I think it was a 20 count, maybe?). And her records at the pharmacy indicate as much.



    It's still over my head how pharmacists can override medical doctors. Feel free to disagree, but please do so without "the greater good" argument. She's my mother. She's over 10 hours away from me. And she's hurting -- worse than I've ever seen her hurting. 

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  13. Maybe .. or maybe our medical system works better and care is better?


    Here if you are coming out of anaesthetic you are in the recovery room. Nobody except medical staff are allowed there.  There is a nurse per person until they are shifted to the ward


    Where do the people staying overnight sleep? Here there is  only about 2 chairs per room, 4 patients  in each room. There isn't really room next to the beds for a chair all the time, only during visiting time and then they are placed back under the window inbetween. 


    Every hospital I've been to has had private rooms. One patient per room. At the women's hospital I had the children in, at the children's hospital my son had his surgery at, and even in the ER when my husband went in recently. 


    In each room there was a couch that could fold out into a small bed, with the exception of the ER room my husband was in (because if he were admitted he'd be moved to a different room).

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  14. DS8 was in the hospital for about a month when he was around 18 months old. He was in for two weeks following lung/vascular surgery, released, then readmitted a day or so later due to complications / infection / lung collapse, for another 2 or 3 weeks. 


    We tried very hard to never have him in the hospital alone. And 99% of the time, that worked -- but, really, only because we knew ahead of time that the surgery was going to take place, so arrangements could be made for our oldest child's care (at home). My mother was able to come up from another state for the first week or two, then another family for another week, and then another family member for a couple weeks, and neighborhood friends helped out here and there, too. 


    The only time we had to leave him alone was the occasional run back to the house to get clothing, etc. However, by that point we trusted the nurses we knew would be on shift. On more than one occasion, I would be fast asleep in his hospital crib, and wake to find a nightshift nurse rocking him and singing him -- so I could get some sleep. The nurses at our children's hospital were amazing. 



    I'm not sure we'd have the same resources if it happened again, honestly. I have zero family in the area now (or even close enough to drive at all). The one family who lives somewhat near us takes care of a farm all day (largely by herself) and that just isn't the kind of job she can take time off from. My only best friend I would feel comfortable doing it (considering our kids' special needs) is about to move out of state. I have no clue how we would pull it off. 

  15. Yes. This is actually one thing my DH and I have been discussing at length as he works in PTSD research as well as TBI which goes hand in hand.


    I often start treatment with kids coming from an angle of PTSD assumption when kids exhibit symptomology in this area. I also begin DBT right away as teens that are not self aware or more narcissistic in presentation just cannot seem to get to the level necessary with CBT. I also do a TON of narration therapy when necessary with kids who fall in this category but are not ready for DBT. Often rewriting their personal story away from victim hood is the only way to help venture out of that level of mindset.


    We have ventured far off the path of autism and more into the sociopathic tendency here but I take this profile seriously and start actively working with the kid. I have worked with many teens I thought capable of being a shooter or who could do a terrible act.


    I'm not even close to being a scientist, so please bear with me here if I misread this (and your earlier posts in this topic). It's entirely possible that I'm combining your responses in a way they weren't meant to be combined, lol.


    If an autistic person's brain is wired in such a way that "one trial learning" or "created event" is just how their brain processes situations (or upcoming situations), how is rewriting their past personal story a long-term solution?


    Both our younger boys are autistic (and not high functioning). And both the "one trial learning" and the "created event" scenarios are very, very true in their cases -- but even if they are talked through a previous negative situation, the next just presents the same issue. 


    For example, DS8 became lost in a very crowded Lego Land when he was about 5. He looked up from the soft play area he was in, and in that exact moment, taller adults blocked his view and he couldn't see me, Sissy, and Grandma. It was only for a moment, but my nephew had (just seconds before) told DS that we were going to get lunch. Nephew meant all of us, kids included, and he meant later (not that moment), but when DS couldn't see us for a second, he thought we'd left him. He took off to find us. The place was bottom-to-bottom and insanely busy. He panicked and just wandered around, unable to do anything but sob uncontrollably, until a worker eventually found him and we, luckily, ran into the worker while we tried to find him. 

    He's almost 9 now and that event still haunts him. He talks about it and worries about it and tries to replay it in his head.


    Similar for my almost 6 year old ASD kiddo. Over two years ago he sat on a public restroom toilet to potty, the toilet had an automatic flush which went off -- he leapt up screaming about rocket ships or similar, and at that same moment, a woman outside the stall turned on the hand-dryer, which prompted even more panic.

    He went from completely toilet trained, to having meltdowns every time he needed to pee -- even after we moved him back into a diaper. He would shriek and run from room to room, trying to not urinate.

    He is only, just now, urinating on a removed toddler potty. Over two years after an event that lasted only seconds. 


    Again, though, these are reactions that happen with most negative situations the boys experience.


    So would approaching it from a PTSD angle teach the autistic individual how to work through potential situations later, or would it only rewrite what has happened in the past?

  16. I don't know.  DD has always been incredibly empathetic and reaches out to outsiders and anyone she feels like needs a friend.  More than once this got her involved with people who had problems that she was not equipped to handle at that age. I walked her through things as best I could, but it's scary.  And yes could be dangerous.  



  17. CBT requires a level of spoken language that may be above where your child is right now. I am a fan of the approach but my daughter is not verbal enough for it yet



    Sent from my iPhone using Tapatalk

    He's got excellent language skills, actually. His official ASD evaluation noted that he used language considered "too formal", but ST was only recommended to articulation issues. (DS5, this DS' younger brother, had the more serious speech problems.)


    He loves talking to people -- which is why I was going to try CBT for him. Of all my kids, he is the one who prefers to be talked through things. I do not think he is one who would prefer play-based therapies -- at least not solely. Is there another kind of talk-based therapy for children that I can consider for him?


    I did actually just stumble on a psychologist in our area who specializes in children with anxiety and OCD... and uses a mix of play-based and "cognitive behavioral interventions" (which I assume is CBT). I would really like somebody who could see him and I together, because I would like to know how to help him at home, too. And he does not like to be separated for us (me, DH, or Big Sis), at least not until he gets to know whoever he is left with. 

  18. I'll be another one that says this sounds like OCD.


    That's important, because the treatment for that is a different kind of CBT, and you'd want someone specialized. 


    It doesn't deal this that exact kind of compulsion, but the book What to do When Your Brain Gets Stuck is really great. It's written to kids, but I find it very helpful as a parent. https://www.amazon.com/What-When-Brain-Stuck-What/dp/1591478057


    You can have other sorts of anxiety and OCD as well. My son has "regular" anxiety, generalized anxiety, and OCD. The OCD can really take over life. I hate it. 


    I've been looking for CBT for him. The tricky part seems to be finding somebody who works with kids as young as him -- and who have experience with autism and OCD or other anxious tendencies. As in, I've completely struck out. When I was looking for a therapist for a different kid of mine (older; no autism in the mix), I had dozens of options. I've asked that therapist for recommendations, and I'm not getting far. Our insurance will cover pretty much anything I want -- but I can't seem to find jack in this arena.


    It's frustrating. And, yeah, it's taking over life. He even does it in his sleep -- no joke. 

  19. He has actually been pretty healthy all year. 


    He isn't reading yet (suspected dyslexia, like our DD16), and writing is very difficult for him, so workbooks can be tricky. Is the workbook something I could read through and take something away from?


    I'm not opposed to anxiety mediation at this point. However, I do know that it will take more consideration for him to get it -- if the dentist is any indication (he needed oral sedation), I know his developmental ped will want to speak to a couple of his medical specialists before prescribing much of anything.


  20. Can we talk "tics"? Our almost-9 year old (Level 2 ASD; a few other health related dx's, congenital in nature) has, in the past few months, started to repeat phrases or words to himself, several times over. He will also repeatedly ask the same question (of us), back to back -- we understand that this is his anxiety coming to a head and he is looking for reassurance.
    However, I don't really understand the repeating words.
    An example would be a couple hours ago. He brought me a cup I asked him to get from another room for his younger brother.
    Me: "Thank you!"
    Him: "You said thank you?"
    Me: "Yes."
    Him: "Thank you? (pause) You're welcome."
    Me: "Okay, buddy."
    Him: (walking out of the room, speaking to himself) "Thank you. Okay. Thank you. Okay. Okay. Thank you. Okay. I will say it only two more times -- Thank you. Okay."
    There is typically a pause before he says to himself, "I will say it only x more times."
    This happens dozens of times every day. Every time he has a conversation with anyone in the house. Literally.
    And it's only in the past few months has he has done this -- and become almost ritualistic. Before bed, after saying his prayers with him, I'll stand to leave and he must say the same thing, every night, in the same order, and we have to repeat each after he says it -- otherwise he starts over.
    Sweet Dreams.
    Pleasant Dreams.
    Good night.
    Love you.


    This particular kiddo also has anxiety. He sees his Developmental Pediatrician next week. I'm not sure exactly what to ask her about -- these are entirely new behaviors for him. He's always, always been highly emotional and anxious -- but the rigidity regarding rituals specifically, and the repeating, and new for him. 



    I'm kind of wondering if we're hitting puberty a bit early, honestly. He's tiny (38 lbs; he'll be nine in June) due to his other medical issues, so it's hard to imagine on my end, and he seems (emotionally) much younger than his actual age -- but I noticed some dark hair suddenly above his lip and what appears to be actual acne on his chin (as opposed to another skin condition he has on his arms), and a general... er... smell that takes over my previously sweet-smelling boy about 24 hours after his last bath.


    I know puberty can bring up new difficulties for ASD kids -- or am I way off base and should I ask for a separate eval to tease out something separate from the ASD? 

  21. Wow, that's interesting.  Is the difference whether the evaluation was conducted by someone hired by the school district or other education agency, or do you think it was something else (public, private, regional differences)?


    Even within my relatively small city, there are several routes one can take for an evaluation and dx; they range from educational dx (given by the school; I'm assuming by their staff, and is not considered a medical dx, which is needed for certain state services and medical insurance to pick up therapies) when an IEP is the goal; to the city's autism clinic, which is through the city's hospital system; to hiring a private child psych or developmental specialists. The last two options are the only that qualify as a medical dx, but all are considered valid.


    But the evaluation process for each is very, very different. We went private and, like another poster conveyed, our evaluation process was a series of several appointments, most of which were several hours long. I know people, however, that went other routes which consisted of comparatively short observation times, different tests administered, etc.

  22. I'm a little stuck on a small piece of your post - the idea that 'lack of empathy' is a spectrum quality.


    Delays or deficits in theory of mind are very common, but I have seen no evidence that spectrum kids have any lack of empathy.  ...and I have seen some evidence that **once they understand what another person is feeling* that many spectrum kids are **more** empathetic that NT kids...  the disconnect can be in helping them learn to read other people's cues rather than assuming what they'd feel is what the other person is feeling.


    I cannot imagine it would take enormous expertise to recognize the difference between psychopathic qualities and ASD.   Are diagnoses really happening without a thorough evaluation process?   Based on simplistic checklists?   (I know that isn't how the professionals here are doing things!)


    I think the evaluation process differs a lot based on not only what state you are in, but also what is required from the people you wish to present the evaluation to


    Two of our three kids are autistic (not high functioning; one requires Level 2 supports across the board, and the other requires Levels 2 and 3 supports). I belong to a number of online groups for moms with ASD kids, and I've noticed that the evaluation process differs greatly, and sometimes even within the same city. 

    If all you're after is an IEP, you can get a "school diagnosis" -- which is not considered a medical dx that would qualify a kiddo for insurance-covered private therapies and interventions, but would be enough to qualify them for an IEP and/or school-based services.

    Or you can go through the hospital system's autism clinic -- and that will give a medical dx of autism, but those have loooong waitlists, with children 3 and under getting "dibs" on appointments (because they are linked to our city's Early Intervention services, so it makes sense).

    Or you can hire a private child psychologist or developmental pediatrician to do the evaluation (which is what we did, allowing for -- in our opinion -- a more thorough, less rushed, and more timely evaluation process).


    And I have seen moms who seemed to have only one evaluation appointment -- a couple hours of forms to fill out and a bit of time spent with the evaluator observing the child. In our case, it was several appointments, most of which were several hours long, and included interviewing not only us, but also our Early Intervention worker, and significant time spent with the child -- observing the child, several tests that involved interaction with the evaluator, etc. 


    And then I know moms who say their kid is autistic, because a Speech Therapist or Occupational Therapist working with the child suggested it.



    With that said, the indications and typical qualifications for psychopathy (or schizophrenia) had no part in our ASD evals. The behaviors that qualify psychopathy or schizophrenia were not considered qualifiers for ASD, so I'm not sure where the OP is going with this. 


    And I agree with you -- none of the sincerely (medically dx'd) autistic kids I know lack empathy, once they understand emotions. Heck, even before they understand emotions, they still do not lack empathy -- they just tend to show compassion in a way that isn't considered typical. 


    Before DS5 was verbal (about four years old), though, he seemed to miss that link to "show" empathy in a socially appropriate manner. If his brother got hurt or was upset, DS5 would attack the thing that hurt him or upset him; while it would have been more socially appropriate to hug his brother. He understood his brother was upset, but his way of showing compassion was to "take care of" the thing that caused the upset. Now he will pat his brother and inquire, verbally, as to what upset him -- but he is still likely to yell at me to "be nice at the brudder" if, for example, his brother is upset because I wouldn't buy him another $20 worth of coins on his game, lol.

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