Monday, June 17, 2019

Comments by jm

Showing 10 of 10 comments.

  • I am not familiar with the other programs, but I would be hesitant to call Positive Behavioral Interventions and Supports (PBIS) a school-based mental health program.

    Done right, PBIS is a trauma sensitive practice that is really meant to keep kids out of the mental health system (and needlessly out of the special education system). Social/emotional learning (including teaching students empathy and compassion) is a key tenet of PBIS.

  • BPD –

    I can post a reply to my own comment, but not to yours. Hopefully you do see this!

    My son is very affectionate, and has clearly developed bonds with me and other choice individuals (like his great teachers!). My son’s version of bond and affection is just different from “typical” children. No less strong, possibly more strong, but very different.

    It grinds me when people suggest that kids with autism can’t or don’t develop binds (usually purported by organizations like Autism Speaks – autism’s version of NAMI, but worse). So I do truly believe that you were able to form great bonds with your students if you were willing to put in the work – and so many people aren’t.

    It’s funny that you mention being a gym teacher. My son attends a special private school (where teachers are not my enemy!) that weaves activity and fitness throughout their day. It’s a core tenant of their program. He spend several years in a pricey school “world renown” for their execution of ABA, and he stymied. A few short months at this new school, and he’s picking up skills left and right. 3 years in, he’s doing things I never thought he would. I think that the activity/fitness plays a huge role in it. So I hope you can get back into that somehow!

    Anyway, I will definitely read what you suggest, as I do like to read interesting things (even if I don’t agree with them). I’m glad that this discussion played out on here!

  • Having read what you have previously posted on here and generally agreeing with it, it was easy to give you the benefit of the doubt that you meant no harm ūüôā But it was still hard for me to let your comment sit.

    I grew with a neglectful and abusive mother. I know that has definitely stamped my psyche. I know the scars of this trauma play a significant role in my patterns of thoughts and behaviors that led me to a diagnosis of “mental illness” (along with some genetic factors, I suspect) – I know this even if science hasn’t fully caught up and told me I’m right.

    But autism is NOT “mental illness” (or trauma or other substitute term). It’s a neurological condition generally thought to develop in children BEFORE birth (though it can manifest later). It is thought to be genetic. In fact, there are several genetic conditions (Fragile X, Rett Syndrome) that are considered to cause autism.

    Autism is pervasive. It impacts all the body’s systems. For some people with autism, some characteristics will look like what we label as mental illness, particularly those who would have received an Asperger Syndrome diagnosis in the past. And some people may have a co-occurring diagnoses.

    But, again, autism is not the same as “mental illness.” It’s not caused by psychological trauma to the mother or to the child. Having spent time with children with autism, you have likely well seen that it’s unlike anything else. It doesn’t “look” like schizophrenia, or bipolar, or any other label.

    Sure, the way my son interacts with the world is impacted by my parenting, but that’s true of all children.And, as someone else (firewoman) noted, people with “autistic traits” or full blown autism may pass that on to their own kids.

    But autism cannot be “cured” by love or good relationships (or crystals – Jenny McCarthy). If that was true, almost every kid I know with autism wouldn’t have it anymore. My son certainly does better when I am at my most nurturing, but he still is non-speaking, he still uses echolia, he still struggles with ADLs, he still is his autistic self .

    As a teacher, you certainly would have had a good understanding of the challenges that autism presents. But you missed the “worst” parts. You missed having to deal with behavioral challenges, possible aggression, lack of communication, and toileting trouble all on just a few hours of sleep. Because when my son with autism doesn’t sleep well (or at all) – which is pretty much every night- neither do I. When a parents are dealing with such a cauldron of symptoms, it’s really not surprising that children with autism are more likely to be abused – NOT acceptable, but not surprising.

    Going back to that “refrigerator mother” theory… Leo Kanner, widely considered the “father” of autism for “discovering” the disorder, he was initially a big proponent if this theory, too. He later reversed position. He came to reasons that when saw what seemed unloving/unaffectionate parents, he was actually seeing the byproduct of the autism. It’s hard to be affectionate to a child (in ways that are seen as typical), if the child won’t let you. It’s hard to interact with a child in ways that are instinctual, if your child doesn’t respond to that. This thinking is what replaced the theory generally in the mainstream medical world.

    If your child is diagnosed with autism before the age of 3, they will likely receive early intervention. This is therapeutic services usually delivered in the house. We had around 20 hours a week, at its height. We then had in-home services from our local school system begging at age 3 (along with full day schooling). We had private speech, OT, and PT therapy, developmental pediatricians, nutritionists, GI docs, neurologists, respite workers, PCA services, on and on. This is pretty typical when you have a child with autism. I do think that, if parents of children with autism as a group were consistently bad/unnurturing/unloving/etc., someone would have noticed by now – someone mainstream.

    And we do know what happens to children who grow up without needed affection or stimulation.This is extremely well studied. They develop attachment disorders (think “Romanian orphans”). This is not the same thing as autism.

    I know many, many parents of children with autism (and the kids themselves). Most are tired and harried, but loving and attentive to their children. As a teacher, I bet many of the parents of your students saw you as the enemy – especially if you worked in public school. We parents of kids with autism have to fight to get the right support for our child (as you probably know). It becomes easy to see your child’s teacher as on the wrong side of the fight. I would be willing to bet that some of what you saw in these parents was actually hostility to you (undeserving I’m sure). This may be my anecdotal thinking, but it certainly isn’t one individual child or parent. And I haven’t seen current any research that fundamentally disagrees with my thinking.

    Just to wrap this up, in case anyone’s wondering…
    I did not antidepressants or benzos (or anything but vitamins) while pregnant. And my son never had a “mercury” vaccine until he was 10, well past when he was diagnosed with autism. We don’t live under power lines or near farmland. I don’t use crystals, chelate, use hyperbaric chambers, or do the DAN diet. I think that ABA is highly overrated. I love my autistic son for his quirks, but do wish that life was a little easier for him.

  • I am going to give the benefit of the doubt that it was not your intent but, as the mother of a child with autism, I found your comments HIGHLY OFFENSIVE.

    Science does not yet know what causes autism, but idea that it’s caused by bad parenting or “refrigerator moms” was debunked in the 1960s.

    Sometimes kids with autism have unloving or neglectful parents. Sometimes kids with cancer have unloving or neglectful parents, too. That’s just life. Bad parenting does’t cause either of these things.

  • Benzos show up in a 10-panel drug panel. Most employers use a 5-panel, but the 10-panel is becoming more common. I think it’s because it screens for methadone, which the 5-panel does not. Full disclosure, I worked for a time in HR.

    How drug tests are handled vary by employer and testing company. Sometimes you can tell the screener that you have a prescription and, after confirming it with your pharmacy, they will mark your test as negative. Sometimes this conversation happens with the HR department at the company and, after the prescription is confirmed, the info about the positive test never leaves that department. And sometimes, esp in smaller companies, it happens with the boss. And it can be a hard thing to tell your (potential) boss about your medical condition, be it GI issues on psychiatric.

    With regard to my friends, one was a long term heroin user. The kind that got clean then relapsed then got clean again on a regular basis. It’s possible he had some sort of benzo prescription from a rehab stay. The other, someone I had worked with, hurt her hip and was given I think hydrocodone. She was epileptic so was probably on a number of meds, but I’ll guess that a benzo was not one of them.

  • Thanks for this article, it was an interesting read. I live just outside Boston, and we too have been badly hit by the opiate addiction epidemic. I lost two friends to overdose recently, so this was a timely read. I feel you are connecting dots that few others are.

    I actually have a prescription for Ativan (lorazepem, a benzo). I was originally prescribed it some time ago for anxiety and was supposed to take it every day, something like three times a day. But I couldn’t do that and function as a person. So then I was told to take it as needed.

    Somewhere along the line I determined that it works great for certain recurrent GI issues, and now have a PRN prescription for such. You mention benzo prescriptions for GI issues briefly in a comment. As far as my GI issues go, Ativan has worked when nothing else would. After I had been through many many other medications and treatments. It’s use has prevented me from being a lot sicker. And I’m very grateful for that.

    So I do think there are “legitimate” uses for Ativan and other benzos. Ativan is often prescribed to kids with “failure to thrive” due to things like cyclical vomiting when other stuff doesn’t work, and is literally a lifesaver in such cases. It’s an unpopular opinion on here, but I also think there are some legitimate psychiatric uses of benzos, such as short term use for severe panic attacks. I know several people who take it very occasionally when their usual coping mechanisms don’t work, and they are as grateful for it as I am.

    But I am shocked at how flippantly I was prescribed it, after just a few visits with a new clinician. I was asked if I had a history of prior addiction before it being prescribed, and I have to hand deliver the prescription to the pharmacy. But no one checks in with me about its use or how many pills I have left. I could easily be abusing it or selling it on the street – I’m not, but I could.

    I do think there are times when a benzo is the right prescription, but I also think prescribers need to put in more effort to ensure the health and safety of their patients. I think this is just good care that should be used for any prescription, but especially controlled substances that have addiction potential.

    One thing you didn’t touch on (unless I’ve missed it) is the impact of benzos on employment. I don’t mean the zombie-ifiying effects it has on people, though that’s surely a problem. But more and more work places are doing drug tests on employees/new hires, generally by urine sample. It’s tough having to provide proof of a prescription to employers in such cases. It basically marks you as being “mentally ill” and/or being an addict, depending on the employers personal experience with benzos. And I think that the over-prescription of benzos is adding to the stigma of using them.

    Benzos are detected in urine for a long time after use, far longer than even most street drugs. So even short term use can cause issues with employment. As someone who’s trying to get back to work after a long time away, this is definitely added anxiety for me, one that I surprisingly get little validation about from my prescriber.

    Anyway, thanks for the thoughtful article.

  • I agree with the assertion that children are being overly medicated. I also agree that, in many cases, children are being medicated for things that are within the normal range of child behavior. This is a truly despicable thing that must stop.

    But I know well many parents of children who have been labeled “mentally ill,” and I know well their children. Most of these parents seek out medication for their child (or have it pushed on them) because of behaviors that are *well* outside what would be considered normal.

    We do not have to call these children mentally ill, but we certainly need to acknowledge that they and their families are struggling. These parents choose medication because they are presented with few other options.

    Medication is not the answer for these children. But these families also do not need to be told that their child’s behavior is normal. They need options that are safe and effective for their child and their family, options that work to alleviate whatever stressors is triggering the behavior in the first place. That is what will allow these children to became healthy adults who stay out of prison and psychiatric hospitals.

  • seventhsense –

    I can understand your concern about the person being heard getting waylaid by the listener, and want to ask you to think of this…

    If I am relating a difficult experience to someone and it is too much for them, mentally they are going to disengage from the conversation. No words are needed – I can easily tell they are no longer listening by their body language. I have had this happen with peer supporters as well as with clinicians. No blame for them, it is just their body’s unconscious way of dealing with something that is uncomfortable for them.

    In IPS, we learn to pause and speak up when something is too much for us. This stops that shut off mechanism. Then, in a moment or two, we can get back to where we are. This may seem intrusive to the conversation, and it can be, but it is effective in keeping both people engaged in the conversation.

    It is naive to think that any type of supporter – peer or clinician – will never been impacted by what someone else is sharing with them, no matter how good their listening skills are. IPS acknowledges this, and provides skills beyond listening. Mutuality is about relationship. It is not a mutual relationship if one person’s job is simply to listen without sharing how they are impacted. That is a clinical relationship.

    I am not sure about the “friends” part. The workbook I have and the training I went through was explicit that being a peer supporter is not being a “paid friend” (though IPS skills are certainly useful in any friendship or relationship). It is possible you have an earlier copy of the workbook?

    In any case, I would really encourage the IPS training for any peer supporter. Going through the training is very different than just reading the workbook (I had the manual ahead of my training, and was surprised by how my interpretation differed from what we learned). As I stated earlier, I have been through a “standard” peer specialist training. I have also been through three other in-depth peer support trainings, and many many shorter ones. IPS is the only “whole package” model that tries hard to avoid that “mini-me” role.

  • I have participated in a peer specialist training, “recognized” by the state but provided by a peer organization. It was 17 days total, and did actually talk a lot about the history of psychiatric institutionalization and theories around systemic trauma, as well as the history of the peer movement. This was talked about mostly in the abstract, and it was much insinuated that we all had faced that systemic trauma, that this was our shared experience. The training, on the other hand, talked little about other experiences of trauma and the impact they may have on someone.

    (On a side note, the class was oddly split between those in their young twenties and those forty and older, with a few people – myself included – in between. The training presumed that we all had this same shared history within the system, when in fact the experiences of the older folks and younger folks were quite different. A few of the younger folks admitted to feeling slighted because they felt their system experience was not acknowledged, as if they were not really “survivors” because they had not experienced xyz.)

    I have participated in several professional development sessions on “trauma-informed peer support. One was a two-day workshop by someone who is considered somewhat of an expert in the area. These were great at defining what trauma might look like, in the widest way possible, and what long term impact they may have on the individual. None provided a way to work with individuals that respected this trauma experience.

    And I have participated in the 5 day Intentional Peer Support introductory training. Wow! It was 5 days of hands-on practice for providing support from a mutual standpoint. A truly revolutionary way for not only providing peer support, but for moving through life. If I could change anything, I would add a day or two at the beginning where only competences and values are discussed before the role playing is commenced – simply because that would best reflect my learning style.

    I agree that it would be a beautiful thing to see the values of IPS infused in peer support work universally. Clearly it is not about the amount of time given towards learning material that maters, rather the content of the material and the manner it is presented. Histories and philosophies are great, but role playing and other types of hands-on practice is essential. And the fact the IPS is really a methodology for life, i.e. not something I leave at the door when I go home from my peer job, is what makes it really work I think.

    In my IPS training class, the vast majority had been through the same peer specialist training as I had. Some of the IPS class members were actually CPS trainers. On the surface, this would appear wonderful – I would hope they would infuse IPS values into the CPS training. Sadly several of these classmates said throughout that IPS was just another methodology they were learning, something to choose from the menu at will, or that it conflicted with the way peer support was done in their job/agency. More sadly, one of the CPS trainers made clear from the beginning that she was there because she was being paid to attend, but had no intention of changing how she practiced because she already knew it all. Sigh.

  • Thank you for this.

    I worked for and received support from a peer-run organization for several years. People there were cruel and abuse to each other. People (myself included) were regularly screamed at, threatened, and harassed. Through and through, an unhealthy environment.

    I have been “in the system” for some 20 years and have experienced my share of abuse there, but this was without a doubt a far worse experience. And it feels to me to be made worse by the idea that “peer is best.” I feel something of a betrayal.

    So, yes, peers at bottom are not always all that helpful.