This blog affords me a bully pulpit and today I’d like to use to focus on an issue close to my heart.
As a mother of two children with disabilities, I was spitting mad when I read the Facebook post above.I have some advice for Gina Crosley-Corcoran, who wrote it:
STOP IT!!
Your children do not exist to make you look good to the world, and their struggles are not an opportunity for you to publicly feel sorry for yourself while violating their privacy.
Educate yourself about Asperger’s. Violent behavior is NOT a symptom of Asperger’s, but frustration is. If you had to navigate the world without being able to understand the social cues that everyone else understands so easily, you might be frustrated, too.
Your “Aspie son” is NOT his disability and should not be identified as if his disability were the most salient fact about him. He is your son and like all your children, he deserves your love, respect and best efforts to help him reach his full potential.
The next time you get the impulse to publicly complain about your child’s disability, exercise the control you find so lacking in him and stop yourself.
Try a little thought experiment. Consider how my post makes you feel. Probably not very happy, even though I am a stranger with whom you have no personal relationship. Now extrapolate to your son. You are the center of his world, the object of his love, his most important source of approval and support. How much worse will he feel when he eventually reads your scathing condemnation of him?
A child’s love and trust is a very precious thing. Don’t abuse it. And, please, please, please do not confuse your child with his disability. If you are worn down by coping with it, get psychological help for yourself, but don’t give into the impulse to soothe yourself by publicly humiliating him.
Question: My (nondisabled) older sister and I got into fights with each other when we were little, as all siblings will do: hair-pulling, screaming, biting, you name it. (She’s three years older than I am, and at the time, was more mobile than I was since I didn’t learn to walk until I was six.)
How is it different when a child has a disability? How far should parents go to excuse the behaviour? I was made to apologize, and so was my sister.
I have cerebral palsy, and a couple other illnesses (such as hydrocephalus) that made parenting me not your usual kettle of fish. But my mom fought HARD for me to be mainstreamed when it became clear I was just like the other kids intellectually. I imagine there must have been VERY frustrating times for her, either as a result of something I did or something that she had to deal with (say, ER visits) to help me…
but she’d never humiliate me about it.
What is WRONG with Gina????
We moved when the school district wanted to put me in special ed for my hearing when I was going to enter kindergarten, even though I still hear out of one side and already knew how to write my 9 letter long name. We were borderline welfare level poor, so I imagine it wasn’t easy. They wouldn’t understand Gina either.
You know, I read this claim (that violent behavior is not a symptom of Asperger’s) often, but when you actually look at the research, it isn’t true. It is a strange misconception, apparently one encouraged by people with AS and those who want to protect them.
Because of this false but common belief, I was absolutely shocked when I was attacked by my nephew who has AS. After that happened I started reading in the NIH database, thinking that his recurring, violent behavior must mean he didn’t have AS. I learned then that violence is pretty common in AS, especially children.
This article describes violence as “relatively common” in AS, and references a study which found it to be a problem in 40% of a large cohort.
http://apt.rcpsych.org/content/10/5/341.full
I have to say that article uses the word “might” an awful lot and presents very little data. The only reference that it gave (that I found on skimming it) that suggested any data correlating violent behavior to ASD was to an article saying that children with ASD may be more likely to hit other children than NT. While that’s definitely a problem, that doesn’t prove or even strongly suggest that people with ASD are more likely to be violent as adults.
I found a paper that discusses emotional dysregulation in people with ASD. It seems that it’s not a well-studied area so no one knows whether it’s a primary feature of ASD or comes from comorbid conditions.
http://link.springer.com/article/10.1007/s10803-014-2124-8#page-2
I saw another paper that estimated 20% of the ASD populations suffers from problems with emotional control but I can’t find it at the moment. But based on other papers I’m looking at, I think it’s a guesstimate at best.
She didn’t say violence isn’t common in children with Asperger’s, she said frustration is a symptom of Asperger’s, not violence though yes, it can cause violence. It’s nuanced, sure, but it’s not the same thing. If the child’s feelings of frustration are understood and met with appropriately, their frustration outlet (ie violence- hitting, throwing, etc.) becomes less necessary. Will it happen from time to time? Sure. But violence doesn’t just occur independently of provocation for a child with Asperger’s like it can for a child with conduct disorder. Just because they’re more prone to this kind of emotional outlet doesn’t make it symptom in and of itself.
My nephew literally attacked me without any provocation whatsoever. He tackled me from behind and knocked me down. He was about ten at the time.
There are also a few incidents of kids with AS killing smaller children (usually infants.) While those aren’t common incidents, I think they are make it apparent that people with AS can in fact be violent without provocation.
“Just because they’re more prone to this kind of emotional outlet doesn’t make it symptom in and of itself.”
Um, that’s exactly what a symptom is.
The chances are that your nephew probably has another, even more severe disorder that co-exists with his Aspergers, then.
Thank you. I post here as a physician and usually only about medical things.
But as a mother of a wonderful, smart, and hilarious little boy, who happens to have Asperger’s, I only want the world to see my child as a little boy who is figuring out his own path, not as a disability.
Agreed. my brother has Asperger’s and he was damaged a lot by my parents’ attitude that he was the problem. Yes, he can be a frustrating person, but he was tormented by other kids and continues to be ridiculed by society- you would be frustrating, too. My parents try hard but they don’t get it, they are little able to empathize with how his environment affects him.
Meanwhile my brother hates the word Aspie and even Asperger’s because he associates it with societal stigma- he always says people with Asperger’s are unintelligent (only he uses a much more offensive word). It’s too bad society taught him so much self-hatred.
My kid received six lovely stitches two years ago — courtesy of a frustrated little horror of a ten-year-old classmate who just happens to be on the spectrum. She was making some sort of mistake on a math problem, didn’t want to do it a HIS way (which may well have been the “right” way — amazingly enough, the world doesn’t stop spinning on it’s axis if a fourth grader HORRORS makes a math mistake) and stabbed her with a protractor to get her attention.
Most people with autism aren’t violent, just like most people without autism aren’t violent — you do get the occasional Adam Lanza or Elliot Rodger autistic uber-violent outlier!!
Wow, I’m so sorry to hear that. I hope that child has a behavior management plan and is receiving counseling. That seems like the warning sign of other psychological issues. A lot of kids on the spectrum struggle with flexibility and the anxiety provoked by change, but few would hurt a classmate – and many are themselves the target of violence. I hope your daughter healed quickly- that’s an experience no kid deserves, especially at school.
And yes I agree- we tend to attribute the violence of such people to their atypical cognition when there is other mental illness involved. Though it appears certain mental illnesses may appear more frequently in people with Asperger’s, it is not a mental illness. The shame and stigma these assumptions put on people with autism/Asperger’s are very unfair and ultimately harmful to everyone.
I don’t think the little boy who stabbed my girl is mentally ill — simply incredibly easily frustrated and equipped with VERY little impulse control (which, frankly, describes almost every 10 yo I’ve ever met, including PLENTY of neurotypical ones). A pretty sweet kid when not physically assaulting others.
My girl healed up just fine — though I practically had to start ww3 to get her assailant moved to another class. I know the boy didn’t “mean” any harm, but it’s unfair to expect the VICTIM to remain in the same class as her assailant.
Honestly, it sounds like he may have been mainstreamed without the school bothering to pay for appropriate resources and support. Which is unfair to him and the entire class.
Yes. It does sound like the school system dropped the ball. At 10 I seriously doubt this was the first time he had ever acted out physically against another student. He probably needed an aide, but the system didn’t have the funds or want to allocate the funds.
Or his behavior had improved over the years and they thought he was ready to go without an aide or extra support. Then once this incident happened didn’t have the funds to bring in an aide.
Yes–it sounds like this kid needs a one-on-one aide so that when he starts heating up, the aide can cool him down and keep him on task.
That’s expensive, of course, for the school.
I’m very sorry this happened to your daughter, @KateFowler:disqus, however, had I been the mother of that boy, I would’ve made him apologize to you and your daughter. I also would’ve apologized to both of you as well. I’m glad your daughter is doing okay. I also would’ve agreed to move him to another class.
^^ What you just said (see my previous post.)
I worked with a couple of kids that once had mental illness diagnoses that were changed to Asperger’s. The mental illness diagnoses were given initially because of their violent outburst, but were changed once the children were evaluated more thoroughly by experts in Autism. I don’t think denying that some children with Asperger’s can out physically or adding an additional stigma to mental illness is helpful.
Many different developmental disorders, types of brain damage, and mental illnesses can cause a decrease or lack of impulse control. Singling out ASD doesn’t make sense to me.
It’s by no means certain that either Lanza or Rodger had Asperger’s syndrome. They may have “suffered” from nothing worse than male privilege. That being said, Asperger’s is in no way protective against the person in question also being violent, impulsive, or just a general horror of a person, as in your daughter’s experience.
I don’t know…..on the one hand, I can understand not wanting to be equated with a disability. I was born profoundly Deaf, and as such, my life is very much affected by this trait. For one, my first language is American Sign Language, and as a native Signer, I knew from a very early age that I would have to put in an extraordinary effort to attain the same level of education and literacy as my Hearing peers, both of which I value almost above all else. For another, it has profoundly shaped my cultural identity. You may notice my use of a capitalized D when I refer to myself as Deaf. Our culture is profoundly different from that of mainstream American culture. Our values are different, as is our language, our modes of self-expression, our art, even the way our cognitive processes operate. My status as being unable to hear does not define me, by any means. My status as a member of Deaf culture does, at least in part, as surely as your membership in American culture does. If I were to wake up tomorrow as a hearing person it would alter a large piece of my identity as surely as if I were to move to Japan.
This is why I don’t refer to myself as Deaf (or even with a lower case). I started losing my hearing as a teenager, reaching “moderately severe” in my 30s (and it has stabilised on medication). I have never been a part of the Deaf community and culture. I did at one stage consider whether I’d need to learn sign language, but as I do well with hearing aids and the cause of my hearing deterioration was found and treatable, I’ve not sought it out.
Karen, welcome to the world of the Hard of Hearing! I have been told that it can be an interesting, limbo-like state, in which people have one foot in the Deaf world and one foot in the Hearing world, and yet are not quite a part of either. I don’t know if this description matches your experience, but I have often heard this from my Hard of Hearing friends and my friends with Cochlear Implants.
I’m lucky I guess in that I never really had that in limbo feeling. I was in pretty deep denial for a while though (not uncommon when losing hearing) and by the time it was bad enough to start having a severe impact on my life I realised I was coping OK with hearing aids and just got on with things – if that makes sense. I barely gave it much thought and eventually it was discovered my particular issue was bigger then just the hearing loss and was also treatable. My family is also a mini support group with the same rare issue – I come from an “it’s just a wee flesh wound” kind of family.
My father is blind — and, like you, it happens to be a big piece of his identity. My grandparents (god rest their souls) apparently initially thought having a ‘handicapped’ child was a great tragedy… but pretty pretty quickly realised that, well, he was their kid and he was pretty amazing as-is.
You know what, I’m going on holiday for 10 days with my DH and my neurotypical DH.
I’m looking forward to it.
I’m actually not planning on reporting every frustration to the world at large.
TFB needs to reassess her boundaries.
Your children do not need to read about your frustrations or anger with them.
They do not need to see your fear or doubt.
You put it on Facebook, your kids can see it.
By all means feel it, and manage it and share it privately, preferably with a paid therapist, but you should NEVER put it where you kid can see it.
Because if you can’t imagine what seeing that written by your mother would do to a child…
Just… Be a grown up.
Deal appropriately.
Don’t vent on FB.
Your children deserve your unconditional love and support in public.
Manage your issues in private, and don’t scapegoat your kids if you can’t cope.
My thoughts exactly. My mother passed away a number of years ago, and my siblings and I found the incredibly vicious, vituperative diaries she had kept, going into lavish detail about how she hated all of us except for one particular child (and, for good measure, how much she hated our father too). We were all adults and no one but us even saw those diaries, yet I remember how horribly embarrassed and hurt we all were. I can only imagine how we might have felt if she’d posted even a watered-down version of that stuff online. But even had she posted, “I am so proud of my son, ___, he is FINALLY walking at 12 months (I was getting worried there!)”–I’m not cool with that either. A) Most people, even your “FB friends,” JUST DON’T CARE, and B) as I said earlier, it’s your kids’ life. Your child is not MiniMe, here to reflect glory on you (and, by extension, your amazing parenting skills a la GCC).
But at least my mother (I hope) intended for no one else to see those diaries, and was dealing with her demons privately. I’m sure GCC loves her kids (at least, I want to believe she loves her kids, though the more I read of her the more I fear she views them as props in her performance art). But does she realize what she is doing? Also, this may just be me, but I have a brother w. Asperger’s (also Tourette’s, though I am not sure one is related to the other.) He once let his current supervisor know, and the supervisor, a compassionate woman, said, “Well, occasionally I thought something was a bit odd, but really, I kind of figured that was just the way you like to do things.”
Also, however accepted terminology “Aspie’s” may be..well, what if her child had Down’s syndrome and she said, “My Downie son?” Of course, more importantly, why is she putting her child’s private medical info out there to begin? To get compliments on how great she is for dealing with him? To get “you go, girl!” “support” from her loyal fans? Or to crowd-source ideas for his care (which is really a matter for the child’s treatment team?) Whichever it is, I can’t see that it helps her child OR her.
Sorry for the long post, but here I AM going to brag a little: Now that he is going off to college, my son thanked me for keeping things private. There have been times in the past when he said, “Why didn’t you mention X? Aren’t you proud of me?” (I use my FB almost solely for political issues I am active in). I’d say, “Of course, but they’re YOUR accomplishments, not mine, and do you really think that someone who reads my page because they are interested in Y is going to care that you did X?” To people I know IRL–sure, I might send them a private message, but the details of my son’s life are in the end, I think, his to disclose or not.
Whew!
“Also, this may just be me, but I have a brother w. Asperger’s (also Tourette’s, though I am not sure one is related to the other.)”
There’s often comorbidity between Asperger’s and Tourette’s (and also between Asperger’s and OCD and Asperger’s and ADHD.
Remember Kate Tjetje? OY!!!!
I may be unusual in this regard, but some things I don’t do are:
1. Put pictures of my son on my desk at work
2. Post pictures of my son on facebook, nor do I mention him in any posts by name. Actually I rarely mention him at all.
3. Talk about his disappointments or accomplishments on FB or to anyone who I don’t know will be personally interested, ie, friends, family members.
4. Endlessly talk about the day of his birth, I don’t recall much of it myself, but the he did ask me once, and the only detail he found remotely interesting was the fact that I had a nightmare the night before, ended up oversleeping and was 20 minutes late to my scheduled CS. Which he found funny,
And it’s not that he doesn’t have things to brag about, but the point is: it’s his life. He’s heading off to college in the fall, and I don’t want his new friends to find google searches where I bitch about his potty-training adventures or whether he walked/talked on time, etc. Maybe TFB believes in life as performance art, but I can’t help thinking her kids are going to be in a therapist’s office, or else writing really juicy memoirs about how Mommy had no time for them b/c she was tethered to the computer 24/7.
I don’t post pictures of my kids anywhere online that isn’t super-locked–well, I have once or twice, but in those cases I Photoshop a black bar over their eyes. I use codenames when I refer to them online, on the rare occasions I do so.
I think more people are starting to come to this realization. I do not post pictures of my only child (preschool age) online, at all. My friends know to not post pictures of him on social media. I’m ok with group shots – I don’t want to keep everyone else from sharing their photos because he was in them along with others – but they know to not tag us by name in those photos, so they aren’t attached to me or him. Most of my mom friends (all early-mid 30s) think it’s a little odd but they aren’t too bothered by it. But a sizable and growing minority agree with me and have similar personal policies to guard their child’s privacy. I think as social media becomes more mature, more people will grapple with the need to let their children create their own online identity, not inherit one Mom and Dad have been sculpting for years.
Meh. I understand the decision to keep images private. Nonetheless, I post pictures of my son to our social media feeds. However, I make it a point to make sure they are ordinary, “here we are having fun” pictures or videos, with no content that could be embarrassing. Well, no more embarrassing than a baby picture I’d frame and put up in the house for his future girlfriend to see, anyway. I suppose there is that one video where he’s doing a cute dance. Heh.
I don’t think there is much harm done, so long as one keeps in mind just how public social media is, and that at some point, a friend/family member/significant other/employer may take the initiative to read the deep history on social media for their own purposes.
Danielle–I know I go a bit overboard. I guess if were being completely honest, it has more to do with the fact that I’m surrounded by “Feminist Breeders” in this community whose lives seem to revolve around a constant game of one-upsmanship re: their kids. Of course there’s nothing wrong w/ “Here we are trick or treating!” or “Junior at Disneyland.” I just decided to opt out of the Mommy Wars & let my son speak for himself.
As the “token autistic” of this…whatever this is. I kind of feel like I should say something. I am not my disability but my disability is as much a part of my identity as my gender, race, sexuality or anything of that nature. Hence why I refer to myself as an “autistic person” not a “person with autism.” Waking up tomorrow as an neurotypical would be the equivalent of waking up as with a penis or as a gay person or as a person of a different race. I would no longer be me.
As for “violent tendencies,” TFB is way out of line here. I doubt that she would qualify her daughters tantrums as “violent tendencies” so why do that for her son? The world is an incredibly frustrating place for autistic people. But telling the world that your “Aspie son” has “violent tendencies” doesn’t just hurt him but the entire autistic community. Now all of her readers are going to associate aspies and autistics with violence. This is despite the fact that we are far more likely to be the victims of violence than the perpetrators. Autistic people have it hard enough without people insinuating that we are violent.
I am not sure if Illinois has an equivalent to the New England Aspegers Association but if they do TFB should invest in a membership.
You’re making the choice what to call yourself. Her kid doesn’t get to decide, and now that’s who he is to the world. Kinda like “my VB baby” or “my c-section baby.”
What I wrote above is the opinion of the majority of those in the autism community. I think that we should take the feelings of the people in the community we are labeling when we have these discussions. Referring to people based on how they were born is bullshit to just about everyone regardless on how they were born.
FYI, that’s where I take my lead when it comes to a lot of things relating to my daughter, including labels. It’s been extremely helpful to me, as a mom, to have y’all’s perspective.
Fair point. Maybe I don’t like it because I doubt she’s taking anything into consideration except whatever she thinks and feels.
I am not sure if Illinois has an equivalent to the New England Aspegers Association but if they do TFB should invest in a membership.
Unfortunately, my experience with advocacy groups hasn’t been very positive. A lot of them are infested with woo, conspiracy theories are shared as fact, and often they will shun parents who don’t follow the proscribed protocol, whether it is GFCF, no vaccines, etc. It’s like being a mainstream mother seeking support from LLL–they are likely to get a steaming pile of bullshit and judgement.
Regarding the violent acting out, I understand why the advocacy groups are leery of having ASD people labeled as violent, but it’s a fact that many ASD kids struggle with emotional regulation and every parent of an ASD child I know has been bitten, slapped, or punched by their kids long after the toddler years are over. Doesn’t make the kids evil or mean they are doomed to become violent adults, but it’s a real problem and loudly insisting it isn’t doesn’t help. What would help are things like parent training, respite care, etc. But those things are expensive and in most areas not available.
There are variations of autism, just like there are variations of many other aspects of life. I have a close family member with Aspergers. That person (now adult) has NEVER once been violent to any person, animal, or plant.
That’s great. But it doesn’t mean it isn’t a problem for a lot of families. And those families need help.
The plural of anecdote is not data. It doesn’t matter how many kids with ASD you know personally. I personally know lots of kids with ASD who are completely nonviolent and one of them is my oldest daughter. Not only has she never hurt me or her father, but she has never, ever raised a hand to her typical siblings. Even when her toddler brother got into her room and trashed it. And she’s nonverbal, so you can imagine how frustrated she gets.
Lack of services is never an excuse of mistreatment or abuse of kids with ASD and when you use such incidences as calls for more services, you are tacitly condoning them.
Also, let’s define “violent.” Toddlers hit because they don’t understand why hitting is wrong, or have difficulty expressing themselves. Sometimes older kids with developmental delays do the same thing. This does NOT mean they’re likely to go out, get a gun and deliberately kill someone!
That brings up another point and that is that their is a double standard. Let’s say a 4 year old neurotypical kid
has a temper tantrum and hits his/her mom. Most people brush this off as him/her being cranky or missing his/her nap or something. Now if it is an autistic kid all of the sudden he/she has “violent tendencies” as the result of his/her autism. Bullshit.
Growing up autistic is an exercise in being constantly frustrated and overwhelmed. It is hard to learn to cope (especially since you often get “don’t cope like that”).
I agree with you on the double standard. It’s important not to frame every behavior as an ASD/disability issue.
I 100% agree with you. It doesn’t mean a developmentally delayed kid will grow up to be a violent adult. But if you are a parent dealing with a 9-year-old kid having toddler-like tantrums, it is a big problem. How do you keep your kid from hurting you without hurting him/her in turn?
Bullshit. I am not condoning violence against kids. This is the crap I’m talking about. I’m not complying with your party line about parents and ASD so now I’m condoning violence. This is exactly the same crap that goes on with breastfeeding:
* I’m having trouble BF.
* Most mothers have no trouble at all!!!
*Okay, but I’m still having trouble.
*Stop talking about it!!! You are being too negative!!! And you’re a bad mother for even bringing it up!!!
This Does Not Help. Parents of kids with disabilities are already marginalized and don’t get enough support. Saying they need more help is not a sign-off on abusing kids nor am I saying all ASD kids are violent. But for the families that are dealing with it, they don’t need to be shouted down or silenced.
It’s not a “party line,” it’s my life and it’s the data. You are making a lot of sweeping statements that I know to be inaccurate and you are using abelist language that hurts that autistic community.
In my opinion, however, it’s a “party line” because you are basically telling Guesteleh to shut up. And I don’t see the data.
http://amazingadventuresautism.blogspot.com.au/2014/07/lack-of-services-does-not-cause-child.html
“The plural of anecdote is not data. It doesn’t matter how many kids with ASD you know personally. I personally know lots of kids with ASD who are completely nonviolent and one of them is my oldest daughter.”
If the plural of anecdote is not data, if it doesn’t matter how many ASD anecdotes one has, then why is the very next sentence of yours launch into a anecdote about why Guesteleh’s experience is inferior to your own?
My point was that I had an anecdote that was the opposite of hers – almost every anecdote can be matched with an opposite one. I meant to come back to post the actual stats that I have, but I didn’t have the time. I hope to be able to do that in the next couple of days.
She thinks she’s going to cure him. :-/
I know. I read the Facebook thread. It was classic Gina.
Comforting to see that some things never change, eh? 😛
Not really. I loathe the idea that someone isn’t “living up to their potential” but Gina personifies that idea. Bright, witty, funny and her own worst enemy.
I’m not so sure she’s “bright”.
Reminds me of the book “Let Me Hear Your Voice,” by Catherine Maurice, who maintains that she “cured” two of her children of autism in just under six months with Lovaas therapy and a treatment team that must have cost more than the Mets starting lineup. Reading the book, it’s obvious that:
1. One of the kids was not autistic to begin with, and
2. The other (if she was, I wasn’t convinced)was at the very highest end of the spectrum.
Come to think of it, the author had a lot in common with TFB: She mentions how “appalled” everyone in her “Upper West Side neighborhood” was when she got pregnant a THIRD time. Gee, no one in Manhattan has more than one or two kids? I couldn’t help wondering if some of the “comments” she claimed to receive were all in her head. And that author mentions her “doctorate in French literature” and her husband’s wealth so many times that I found myself saying to the book: “Yeah, I get it, you are one of the Elect and I am not, can we please get on with it? I humbly accept that you are SOOOO much better than I am.” Feel the same way reading TFB.
Actually, after reading a blog by a regular poster on here, I felt the same way…I like to think of myself as pretty secure but this blog plunged me into depression for a period of weeks. No more blog reading for me.
Question about ASD and the spectrum: does “high end” mean “more severe symptoms”, and vice versa?
I think “high end” autism is when an autistic person wears a monocle.
HFA: high functioning
It means the disabilities aren’t as noticeable and don’t impair functioning as much.
I find it easier to explain it as HF autistics can function independently or nearly so of targeted supports. As you move down the spectrum, more and more supports are needed in order to function and less independence is possible.
Someone who is HF can be expected to get and hold a job, live independently, have stable relationships with little support or accommodations.
If she said that she wanted to understand him and what goes on in his head, I would be impressed.
If she said she wanted to help him deal with his challenges, I would be supportive.
If she said that she worried about how this would impact his future, I would love that she is looking ahead.
If she wondered how she either prevent this from happening again or tried to come up with an appropriate response, I would be happy.
Slightly OT, but have you ever read LOOK ME IN THE EYE by John Robison? It’s an amazing, beautiful book; my older daughter is on the high end of the spectrum, and the book (it’s a memoir, basically) made me cry more than once. I really recommend it for anyone who is or has a child or friend who is on the spectrum.
Thank you for the recommendation, I had not heard of this book but my niece’s toddler son was recently dianosed as being on the spectrum and has just started speech and occupational therapy. She will probably want to read the book.
Slightly off topic, but related to the book title: I hate looking people in the eye. Not only is it vaguely uncomfortable, I don’t know how to stop it. As far as I know, the rules are:
1. You must look people in the eye when you talk to them.
2. If you hold eye contact for too long that is considered anything from flirtatious to threatening based on FSM alone knows what secondary signals.
3. If you look away by looking up, you’re rolling your eyes, indicating sarcastic feelings towards the person speaking.
4. If you look down, you’re shy.
5. If you look to the side, you’re “shifty”.
So, you’re supposed to look people in the eye, but not for too long (what’s “too long”?) and you can’t look away by looking up, down, left, or right. How exactly is this supposed to work?
In sociology, there’s something called “civil inattention”:
“Civil inattention is the process whereby strangers who are in close proximity demonstrate that they are aware of one another, without imposing on each other – a recognition of the claims of others to a public space, and a sign also of their own personal boundaries.” (wiki)
Usually it lasts for less than a second. Any longer than that, and people both start feeling uncomfortable.
This lady is despicable and will do anything to get attention from people that she knows and strangers alike. I feel awful for the people who believe her lies and her poor children. Despicable and dangerous
I have a couple of friends who have children with special needs. They rarely mention their child’s disability or struggles (which can be very taxing for the parents) on social media. I’m sure part of this is that they don’t want people without any understanding of their child’s issues offering unsolicited advice or raining down condemnation on the parents. They probably also feel a bit of embarrassment and shame that they can’t “control” or “fix” their child. But more than anything I think they understand that their child’s diagnosis is not the child’s entire identity, and being the parent of a special needs child is not their only identity. There is something to be said, I think, for keeping a little bit of your family’s life private, and sharing your deepest struggles with the people who are closest to you – rather than the entire world.
I agree completely. My SIL has a child who suffers from severe disability due to a rare genetic syndrome caused by mutation. By severe, I mean that at the age of 6 the girl does not sit up on her own and has never shown any sign of conscious understanding. Still the parents keep her at home rather than send her to an institution, and my SIL keeps meeting with professors, experts, anyone who might be able to give her the faintest hope that the child’s condition can someday be improved. Of course the birth of this child was a crisis that affected the entire family. Still, she has 5 other children to take care of, she works as a teacher and a research assistant, and she is a bright, optimistic, vibrant person. In her daughter’s case, sadly, I do believe her disability largely determines what she is. But for my SIL, being a parent to a disabled child is not all there is to her life. She neither hides nor parades the fact that one of her children is severely ill. And this is doubly hard in the Orthodox Jewish society, where in many people’s minds, disabled child = family you’d better not marry into (some people just don’t understand about random mutations).
It sounds like your SIL is doing as best she can with a situation that must be incredibly difficult. I imagine that it’s easy to become completely overwhelmed by a child’s disabilities, especially if they are severe, and feel like you’ve lost yourself in becoming a caregiver.
As it happens, I am Modern Orthodox. The attitudes are changing – very, very slowly, but still going forward. I look at the marriage situation as a blessing. If people don’t want to marry my children because of their sister, than those are exactly who I would never want them to marry.
You’re right, attitudes are changing, but at a glacial pace.
This kind of post by his mother is going to hurt this child in so many ways. Publicly identifying a child with ASD as violent or “having violent tendencies” can have very, very bad consequences as he gets older. Aside from how differently and worse people will treat him, it will affect his placement in educational, respite, recreational, and treatment programs and facilities. Special ed teachers, for example, are very judicious in their reporting of any aggressive behavior, because they are all too aware of how it can affect the child’s future.
This kind of attitude is why abusers and murderers of disabled people get lighter sentences and tons of sympathy. It’s a huge problem that gets very little attention because disabled people are so marginalized.
This also bothers me because there are so many resources available, compared to even 5 years ago. Don’t know what to do? Call your county’s mental health services, call the local Autism Society chapter, find a developmental pediatrician, find a behavioral psychologist, call their classroom teacher. I could go on an on. We had a 5K last month, sponsored by our local Autism Society, and there were so many booths at the resource fair.
And if your child is “pushing [you] over the edge?” After getting him help, get some for yourself and develop better coping skills. I’m an athlete and I race with my daughter, who is an assisted athlete. The intense training gives me what I need, emotionally and mentally, to cope with the demands of all of my children. Find whatever that is for you and stop wallowing in unwarranted despair.
Oh, yeah, authorities nowadays are absolutely terrified of people who might be violent, even if the fear is completely unjustified.
I wonder how the number of children who’ve had their lives ruined by these sorts of policies compares to the actual incidence of serious violence by people with mental disabilities.
We can tell folks that people with mental illnesses and intellectual disabilities are much more likely to be the victims of violence, rather than the aggressors, until we’re blue in the face. But attitudes will never change until people like this woman start loving the child they have and stop telling the world about how difficult and thankless it is to raise him.
Last I had read, she had a therapist come in and work with her son at their house but she found it really annoying because the kids kept asking him for things like snacks and not her. Oh, and he is hot. That was the last that was ever mentioned of him. I would bet money that he isn’t receiving any kind of help right now.
Seriously? That’s insane. It’s her job to ensure that there are optimal conditions for therapy in the home, which includes keeping other children away (or not, depending on the therapy/therapist, etc.) and that the child is ready for therapy – fed, clothed, toileted, etc. Clear boundaries should be set from the beginning, on both parts. If she doesn’t want her kids to ask the therapist for a snack, tell them to stop asking. And tell the therapist to redirect them to her. There, “problem” solved.
Disruption of therapy and constant changes in therapists is really stressful for kids with ASD (as it would be for typical kids). It can cause regression and rigidity, big time.
My heart is breaking for this poor kid.
He probably did.
Notice that the complaint is that they ASKED the therapist for snacks, not that he gave them snacks.
And he was hot.
His “hotness” was a problem for her? Wow.
I can’t wrap my mind around kids asking the therapist for a snack is a problem. Like, did she feel it undermined her authority? Did it interfere with the session? I’m not being obtuse – I really don’t understand.
I’m guessing it was the “undermine her authority” aspect.
I wonder if she’d be so threatened if they asked for snacks from, say, a piano teacher for a typical child. This situations seems all kinds of messed up.
Or keep the other kids away from the therapy session or arrange for the other kids to not be home! Ya know like use common sense?! Again her attention seeking is hurting her own children and other people.
The kids probably asked him for the snacks b/c she was too busy blogging. I really don’t know how she does it…I have a lot more time to read & post now that my son is an adult, but when he was her kids’ age he ate up most of my time (gladly, I may add). I can’t even recall if FB and “blogs” existed then, but if they had, I sure didn’t have time to be posting on a daily/hourly basis.
Oh no, I think it is more of the “I’m the controlling parent and I decide exactly what and when they get to eat”
It reminds me of that poster-who-shall-not-be-named who brought his own groceries to his sister’s house because he didn’t trust her to make the right stuff.
Unless the kid is ACTUALLY violent. My daughter required six stitches two years ago, as a classmate on the spectrum stabbed her with a protractor out of sheer frustration. Kay was apparently doing some math problem WRONG, was unwilling to take his advice and apparently the protractor + kid with low impulse control = disaster.
A fun side-story: I refused to have that kid in my daughter’s class. Because it’s unfair to make her sit ten feet from her ASSAILANT. You do not want to know how many “stern talking tos” the teacher / principal / assistant superintendent of the country school board had attempting to convince me I was “discriminating” by kicking up a fuss about that little boy.
You’ve shared this story on quite a few other blogs, so I’m familiar. I understand why you’re still upset about it and I certainly acknowledge that there are people in the autistic community who commit violent acts, just as there are in any community.
My autistic daughter was bitten by a typical child of color. It broke the skin and she needed antibiotics, though not stitches. Do you think it’s appropriate for me to comment on various posts about children of that particular ethnicity and their tendencies toward violence, based on this particular incident that hurt my child?
Gina talks publically about her children like I do my pets. Every family has some drama, most leave it private. Gina posts about her children because she runs out of brillant ideas to write about. She posted pictures of her daughter in a CT machine after she fell in her own house! Any child gates? Any remorse? No, just shock and stupidity.
It’s true, I’ve been known to cat shame on Facebook.
Someone got mad at me for being so negative about my son Fred, and always talking about the negative things he does.
Fred is my cat.
But I can understand the confusion because most cats don’t get into freezers and eat ice cream or lock people out of the bedroom.
My oldest daughter has ASD and is nonverbal. I sometimes refer to her as autistic, because most adults with ASD prefer that term.
I never, ever post any specifics about any of her behaviors or challenges online. Ever. I try to never say anything negative about her at all. If we are going through a rough patch and I really need people just to tell me I’m okay, I will write a vague prayer request. Why? Two reasons: 1) People judge children with ASD by their worst day and 2) my daughter deserves privacy. I read and participate in several forums run by and for adult autistics (again, their preferred term) and they’ve written about how much it hurt them to hear their parents always complaining about how hard it was to raise them, often right in front of them!
And the challenges of raising a child with ASD aren’t greater than those of raising a typical child (I have 3 of those), they’re just different.
If Gina feels pushed to the edge, just imagine how he must feel!?!?! If she could – for once – not make this about her she might see progress.
I mean come on, she stopped having her sons therapist work with him because it was too embarrassing that the kids kept asking him for basic needs and not her.
She won’t talk to the school about it because it “makes her too mad”.
She won’t even talk to HIM about it!!! If he doesn’t understand why he’s feeling so frustrated, how can he begin to work on himself?
Well, she’s on vacation now posting photos of the only kid that matters to her… this will all fall on deaf ears anyway.
Off topic: http://dailydose514.blogspot.com/2014/06/the-birth-of-harvest-aletheia.html?m=1
Pretty much a standard home, er I mean midwife’s cottage, VBAC, which fortunately has a happy ending. I’m sharing, though, because any midwife who leaves a laboring VBAC mother to go do a post-partum check of another woman is guilty of malpractice and utmost negligence.
I also like how the doula told the mother to keep the pitch of her screams down to help guide her baby under her pelvic bone. Fascinating stuff, here!
Dr. Amy, I honestly feel like this post was a little mean. I agree that she probably shouldn’t have put it on the internet, but I don’t think you should have blogged about it. Aren’t you hurting her son by making it even more public? I also think you attacking her parenting is incredibly rude. I have a brother with Asperger’s, and my parents did some dumb things, but attacking someone doesn’t help the situation. My parents could have used the love and support from people around them, and that love would have gone directly to my brother. You probably have just caused her a lot of heartache and pain. She is human. Sometimes positive reinforcement goes a long way. You could have written a post about parenting without mentioning her name. She would have gotten the hint without the punch. Lately I feel like you are hurting a lot of people. I understand this blog, and it is appreciated, but there is a line, and you are getting awfully close. Don’t lose yourself and why you are here.
Nothing wrong with seeking that support, as you say, “from people around them.” But there’s a difference between seeking love and support from a few friends close to you, and sharing details about your child – like his full name, city and diagnosis – with thousands of internet strangers. Gina didn’t put this on a personal page seen only by her own friends and family. She posted it on her monetized blog’s page, seen by lots of people she doesn’t actually know who may be following her for any number of reasons. There is also, of course, a case for seeking advice from others who have been through the same situation, instead of family and friends who care, but may not understand the issues. But if that’s what she wanted, there are plenty of more anonymous places to seek this advice that wouldn’t involve her sharing stories about her son in a place where his identity is known. There’s a huge difference between seeking actual support for yourself and your child, and seeking attention for being such a martyr (or Strong Mama, as the crunchies seem to prefer). I think Gina is always after attention, not real advice.
Also, Gina has yet to express a single thanks to anyone in the thread who offered advice; she only posted to snark at someone whose phrasing she didn’t like. If you want to be worried about tone, Gina’s a lot nastier than Amy ever gets, IMO. She is routinely rude to her fangirls and I am not sure why they keep kissing her rear when she acts offended.
There was some reasonable advice given too.
She doesn’t post to ask for help and often seems hurt that anyone thinks she would need help.
She posts for traffic. Her livelihood is being ‘the feminist breeder’. Her ‘Aspie son’ opened up a whole new market segment for her.
But if she did that, then she couldn’t get the sympathy for being the parent of a special needs child.
I wonder how much of this is her own martyrdom. She says, “Oh, my child is such a terror!” She says it in a public forum, everyone can respond with, “Oh, poor you!” I mean, we know that all kids can drive you crazy at some point, but, of course, her situation is so much worse because of her Aspie child.
However, if she goes to a support group with others in the same situation, they may commiserate, but she’s not going to be able to be special. “My child is a terror!” “Yeah, we know what you mean. We feel for you. Here’s what we have done to try to deal with it.”
I tend to interpret all of TFB actions in light of her narcissism. “Why does she do that?” Because it’s all about her.
Thumbs up. I couldn’t agree more with the title of this post – “your child is not his disability” – but why does this have to be applied as a personal attack on someone?
I actually like her tone, sometimes things are just wrong and people should just flat out say it without this huge attempt to “stay positive” and slide around the issue. Some things are just inherently wrong. Most child abuse happens because the adults around that child do not want to confront the parent or because “well we don’t know the whole situation”, you don’t have to always know ones life story to say “that thing you there did is wrong”. Calling your disabled kid on the internet, yep that’s wrong no matter what her life story is.
Also with the history between these two, nothing said lightly is gonna register. If you already think someone is a sooo mean anything they say will be filtered.
(I am not accusing TFB of child abuse, it was an example)
“sometimes things are just wrong and people should just flat out say it”
I agree. I believe, however, that one must stick to the known facts without making assumptions.
What do I mean?
“Speaking foul words in front of your child is wrong, period” – OK.
“Speaking foul words in front of your child is wrong; you’re not watching your mouth because you think you can get away with anything and no one ever been taught better” – not OK.
Be precise. Be professional. Stick to facts. This is especially important if one wants to be taken seriously.
“Speaking foul words in front of your child is wrong, period”
But is that a known fact? Not to derail, I know it’s OT, but this topic is of great interest to me, and I feel it has been insufficiently studied…
http://www.psychologicalscience.org/index.php/publications/observer/2012/may-june-12/the-science-of-swearing.html
To tell you the truth I didn’t really study the topic, I just shot this example out of my sleeve, as a difference between general opinion and a personal attack.
My bottom line: do not make false assumptions about people, and try not to attack people personally. By doing so you are setting yourself up for mistakes, and it does real damage to professionalism and credibility. Thus people will be less inclined to believe other things you say.
“You risked your baby’s life and brain function just so you could boast of giving birth without pitocin” isn’t a personal attack, it’s a medical fact.
Dr. Amy’s tone gets attention, which gets results.
No, no, no. It is NOT a medical fact, on two accounts:
1) “You risked your baby’s life” is not something you can determine via the internet. Certainly not if you are explicitly told that, on the contrary, there was never any indication of risk/distress to the baby.
2) “You did that just so you could boast of [insert term here]” is most definitely NOT a fact. Why? Because you don’t have a magic window to a person’s mind that would enable you to determine just why they do things.
Fact = something known to be true. It can be checked and proved.
“You breastfed for two years” – fact.
“You breastfed for two years just so you could boast of extended breastfeeding” – not a fact. (Maybe it was just convenient and there was no good reason to stop?)
“You homeschool” – fact.
“You homeschool just so you can boast of homeschooling” – not a fact. (Maybe we just believe homeschooling fits our parenting style?)
“You gave birth without pitocin” – fact.
“You gave birth without pitocin just so you could boast of it” – not a fact. (Maybe I wanted to avoid pitocin because it makes contractions more painful? Doesn’t that actually make more sense??)
So, yes, Dr. Tuteur’s tone gets attention, and it gets results. But which results?
When you hear a medical professional say something so anti-factual, so un-professional, so personally insulting, it gets you to question their credibility and, in fact, everything else they say. THAT is a result, too.
This blog presents a lot of valuable information and poignant questions. I had personally written to Dr. Tuteur to thank her for her important work.
But now I am still waiting for a public apology on the “you refused pitocin so you could boast about it” line.
And I believe I deserve an apology. Unless, of course, Dr. Tuteur can prove that the choices I made during labor and birth were indeed rooted in my desire to brag.
Now, I am not aware of the background on your particular birth story and what anyone said about it. And it’s true, I have no idea what your motives for anything are, whether you did it for bragging rights, or because you believed it really was safer, or something else entirely.
However, just because you think there was no danger, that doesn’t mean it’s true. You aren’t an expert, and if an expert read your story and believes you took significant risks, I’d be inclined to believe the expert.
YCCP, it’s perfectly acceptable to say, “as a medical professional, I believe your choice was risky and I would advise against it”.
However, saying “you did it so you could brag” is not a fact, it is not professional, and it is, of course, unkind. It sounds as if it’s assumed I’m some NCB message board groupie.
By the way, in the aforementioned thread, I also asked Dr. Tuteur why, exactly, she believes I took a significant risk. I didn’t ask to be snarky. I asked because I became genuinely concerned that maybe I HAD taken a significant risk back then, without being aware of it. And if I am indeed convinced now that I took a risk then, and if I ever find myself in a similar situation, I will likely make a different choice. However, I got no reply.
My question was: is prolonged early labor (as is common in first-time mothers), with very mild on-and-off irregular contractions, before ROM, inherently dangerous? How is it different, from the baby’s “point of view”, from just another day in late pregnancy? And would you recommend pitocin for every instance of prolonged early labor before ROM (when EFM shows that the baby is doing well)?
I believe it is a valid question, and I tried to look up information on the internet, but found nothing definite. Perhaps I should ask my OB at my next prenatal appointment.
I think the ACOG recently came out with something about managing labor in first-time mothers. In fact, I think Dr. Amy did a couple post on it several months back. If I am recalling it correctly, they talked about the different guidelines of how long is too long and so forth. I’m sure a search both here and on the ACOG site would bring it up.
Was it this one? http://www.acog.org/Resources-And-Publications/Obstetric-Care-Consensus-Series/Safe-Prevention-of-the-Primary-Cesarean-Delivery
Safe prevention of the Primary Cesarean? The one where they praise postdates induction and everyone quoted the rest of the document and went “lalala” to that part?
Yes, I think so!
Anna,
I wanted to let you know – tone aside – that you did exactly what I was told to do in early labor with my first. With my second, I went in too early (same 3cm that I’d been for weeks, contracting regularly and painfully, but not progressing). If my son had not had a couple of decels they were going to send me home at just shy of 40 weeks. I ended up with a pitocin induction because of those decels and – if in the same situation that you’ve described, with everyone looking perfectly fine and not post-dates, I’d probably want to go home, too. Even if a kind doctor wanted to “get things going.” It seems to me that’s just a personal choice. I too would prefer to avoid pit in a future delivery – it hurts like hell (100x worse than my natural labor) and my epidural failed, so, no thank you. Of course, again, if there were some medical indication I’d be induced in a heartbeat. With my son, they left the induction decision up to me and I didn’t hesitate for a second. But I, too, am very confused as to why everyone is attacking your decision to wait a day or two or a couple of hours, or whatever, and see if you could go into your own labor. I don’t see how there was any more risk than if she had stayed at home and waited. Just because a doctor offered pit doesn’t necessarily mean there was any medical indication for it. Please do share what your OB says, I’m curious too.
” But I, too, am very confused as to why everyone is attacking your decision to wait a day or two or a couple of hours, or whatever, and see if you could go into your own labor. I don’t see how there was any more risk than if she had stayed at home and waited.”
Because we just have her side of the story, and her story has a lot of red flags. Her OB told her he recommended pitocin in her case. We have no idea why, only HER assertion that she knew better than him and that it couldn’t have actually been indicated because she wasn’t ruptured. So she left AMA.
What happened to talking in a grown up manner with your doctor? How about explaining your preferences and asking why a course of action is being recommended. Maybe her OB had a darn good reason, maybe not, but Anna flounces instead. Are we supposed to applaud drauma queen behavior?
Well, I know in my case, with my first child, I was contracting regularly and progressing. However, I was probably in a dysfunctional labor pattern (I stayed at 7-10 minutes apart the entire labor, and my transition took over 3 hours). That being said, I didn’t want pit and I don’t think I “needed” it as I was able to deliver my baby within 12 hours without it. Yet, the on-call OB “flounces” in as I’m pushing the baby out and yells at the nursing staff about why I wasn’t put on pitocin earlier. As far as I could tell, it was just to speed things up. We were both perfectly fine. My entire labor was less than 12 hours and she was born about 5 hours after my water was broken. Is it not possible that some doctors might be a little trigger-happy on the pit? And might, just might, some doctors be too over-cautious even when faced with absolutely no warning signs? I’ve certainly heard stories from friends to that effect, and I think it does this side of the aisle a disservice to act as if those things do not exist. When mom and baby both appear to be fine (assuming that Anna and her baby were as she says), shouldn’t mom’s preference dictate the labor plan? If she doesn’t want to be induced, who cares? I’ve certainly had medical care providers tell me how we were going to do something (as opposed to discussing cost/benefit and letting me choose) and refuse to back it up with anything. “That’s just my rule” was the response when I asked why. Now, I do hire medical professionals for their expertise, but if they refuse to even discuss reasoning with me, time to find someone new. So, of course, I just switched providers – which is perfectly reasonable, right? You might even say I flounced. I mean, when I described the situation to friends, I did sound kind of ticked! So I guess my perspective on this is its certainly possible that Anna got an arrogant doctor, chose to leave because no one gave her any information to indicate an induction was necessary, and she and her child were fine. Yes, hindsight is 20/20, but believing her affirmation that there were no warning signs, I can’t say that I find fault with her irritation (aka flounce) or the fact that she left.
“As far as I could tell, it was just to speed things up.”
Exactly! As far as YOU, a person without medical training or experience, could tell. But your OB had actual medical expertise and knew that a dysfunctional labor pattern, even with adequate cervical change, can be a sign of ascending infection and that it’s best to get baby out sooner rather than later in situations like that. He also knew the downsides of a dysfunctional labor pattern continuing into the pushing stage. Think about it, you are pushing and the baby starts to show signs of some distress–but your contractions come only every 7-10 minutes. You’re a primip, so your tissues are very resistant and pushing without a contraction isn’t going to bring the baby down. So now you’ve signed yourself up for forceps, when if you were contracting more regularly you could have delivered spontaneously or with help of vacuum.
A little knowledge is a dangerous thing. That’s why nobody here is praising Anna and nobody will be praising you.
I didn’t ask for any praise. I’ve mentioned in my comments that I received an epidural with my first and had a pitocin induction with my second precisely because there were some warning signs and I’m pretty risk-averse.
That being said, I’ve thought about this for the past day and here are my problems with your comment. First, one of the most common topics here is “informed consent.” It’s a big problem if a lay midwife fails to give informed consent, but the same is true if a doctor fails to as well. Let’s pretend for a second that I go to a hospital and Aviva Romm happens to be an attending there. Should I just fall in line with whatever she says? I doubt you would say so. I don’t even know how to describe that situation – it was bizarre, but at the very least she was most certainly not attempting to get my informed consent.
Second, as I described, she walked in as I was pushing. In fact, the baby was crowing and they had the staff CNM suited up to catch her. It was completely inappropriate to stroll into a completely non-emergent situation and yell at everyone. I felt like, I don’t know, like a cow or something. She didn’t even pay any attention to me and I certainly didn’t feel like she respected me as a person. There’s something very wrong with that.
Finally, in my case, at least, who cares about risk? It was irrelevant when that doctor walked in. I’m certain you’re right, and if she had approached me several hours earlier and advised pit based on what you described, I probably would have consented. But she didn’t, she yelled about it hours later when it was completely irrelevant to my situation.
Which is all to say, (a) if the doc doesn’t explain themselves – or at least try, I don’t see why I should feel bad or like I’m some princess for just asking for basic respect. And (b) back to Anna’s original point, if there was no real increase in risk, who cares if she went home to wait?
I agree that it situations where there is no turning back (e.g. the baby is already crowning) that it is pointless to criticize in the moment. And criticizing staff in front of the patient is never a good idea. In your case, the OB could have taken her staff aside after the birth was over and asked their side of the story–why hadn’t they worked to get you into a functional labor pattern? If at that point they had told the OB that it was because you had refused pitocin, the OB could have explained to them that in cases where pitocin is indicated, but a patient is refusing, that the OB should be called in to talk to the patient so that she can truly understand what she is refusing as opposed to a knee jerk refusal or refusal due to NCB myths. We call that Informed Refusal, and it’s the flip side of Informed Consent, which as you point out is so important. It sounds like if you had understood the risks of a dysfunctional labor pattern that you might have been willing to reconsider.
But back to Anna’s story. My point is that we only have her (inexpert) opinion and assertion that there were no risks to her leaving AMA. Anna gives no indication in her story that she attempted to have a mature conversation with the OB. She didn’t want pitocin and she decided that the OB was recommending it for no reason and got up and left. NCB sets women up to believe that their OBs are making decisions based on just being in a hurry. You believed it too. Anna would get a lot of praise for her defiance on an NBC board.
I agree, it was unprofessional and inappropriate. Needless to say, although I liked MY doctor, I switched practices for my next child because I didn’t want to risk this person being in the delivery room.
Just to clarify, I was never asked if I wanted to pitocin. I actually said that if I had been asked, and the nurse, doctor, whoever explained what you explained yesterday, I probably would have said yes. (I can’t think of a reason I would have declined, as I mentioned I have no qualms about pitocin if its necessary. I do have qualms based on my inductions experience with a failed epidural, it was by far the most painful experience of my life. Still, if I had to be induced again, I’d just ask for an epidural ahead of time). With the information I was given (doctor yelling at staff), it appeared that she just wanted to speed things up. And, honestly, some women might prefer to speed things up. Heck, if you already have an epidural, who really cares. But that doesn’t mean that if there’s no real indication for pit that women should be maligned for refusing.
And I really take issue with you dismissing her concerns with “Anna would get a lot of praise on a NCB board” line. We’re not on an NCB board right now, and she has a valid concern. Like her, my mother had pitocin inductions without epidurals and she said it was horribly painful. I’m not sure what is unreasonable – again, if there’s no indication of trouble – about declining an induction. Sure, at full term the sooner the baby is out, I’m sure its marginally safer, but no one has described any great risk with her deciding to wait. I’ve heard enough perfectly reasonable friends describe feelings of powerlessness at hospitals while delivering their children to see a valid concern there. Would it make any of us give birth at home, no way, but it’s still a problem.
And to bring this back to the context of this blog – if we “reasonable” hospital-happy moms are describing issues like this, I feel that it only serves to cement my “crunchy” friends crazy NCB beliefs. I don’t think pushing valid concerns aside will help the “cause,” as it were.
Yes, that is not appropriate, a doctor showing up at the end of labor to, in front of the patient, yell about the way it was managed. When apparently he wasn’t involved earlier.
“With the information I was given (doctor yelling at staff), it appeared that she just wanted to speed things up.”
I am confused. The OB came in the room and started yelling about the pitocin and said something along the lines of “I’m in a hurry” or “I want to speed this up because I don’t want to wait” or “I’ve got better things to do”? Because unless that was the case, why would you assume that it was for no good reason besides convenience? Actually why would you assume that at all considering the doc came in when the baby was already crowning? Once the baby is crowning it’s all the same in terms of time frame. The baby will be out in a couple of minutes.
The reason that women immediately assume that their docs just want to speed things up for their own convenience when they suggest pit is because NCB has told them that is the reason.
Thank you. Your situation sounds much more frustrating than mine – you had been having regular painful contractions, unlike me. I just stopped having any so I wasn’t even feeling uncomfortable. And the EFM strip, done several times, looked perfectly fine. Even the very doctor who wanted to give me pit didn’t say I’m taking a *risk* by going home to wait, he just didn’t understand why I don’t want to get things over with already. And it’s not like he thought I might be in home for another week. He told me himself, “either way you’ll probably have this baby within the next 24 hours”.
Of course if there had been any indication at all that anything is wrong with the baby, or if I had been on a limited time frame because of ROM, that changes things. But that was not my case.
I just talked this week with a mom who, like you, gave birth with pit and without epidural (she didn’t receive it in time because the staff didn’t realize how fast she would progress with pit, and before long she was already pushing). She described it as sheer agony. A lot is said on this blog about avoiding unnecessary pain in birth and how it’s better for the woman. Pitocin causes pain. A lot of pain. I don’t think it’s so very strange to want to avoid it.
I do think it is very strange to tell a woman, “you only avoided pitocin so you could boast about it.” Huh? Seems to me like the most ridiculous comment ever.
I’m definitely going to ask my OB and share her opinion here.
I won’t pretend to know your motivations but here are some facts:
Your OB recommended that you have pitocin.
You refused pitocin and left against medical advice.
You came here and told us all about how you refused the pitocin, left, and sought out another hospital where you eventual delivered (You may not call it bragging, but it certainly doesn’t come across as a sheepish recounting of the events).
“I won’t pretend to know your motivations” – exactly. You won’t – Dr. Tuteur did.
No, I didn’t feel sheepish about my choice. At the time, I felt it was perfectly justified. In the second hospital I was later told I should have been sent home as soon as I arrived, because it was too early. So it’s obvious the situation wasn’t clear-cut, and different providers interpreted it in different ways. So which of them was wrong?
“To me it’s obvious the situation wasn’t clear-cut, and different providers interpreted it in different ways. So which of them was wrong?”
But the point is moot. Your main focus was refusing pitocin even if that meant leaving AMA and finding a new hospital at the last minute. That is your right. It is the right of every woman. But nobody here is impressed.
I just re-read that comment thread and to me, you were bragging. You bragged about being right, and the OB being wrong. A few people on that thread pointed out that your actions could have produced different results. Hindsight being 20/20 and all.
I agree. Her comment made me cringe — it’s just so insensitive and disrespectful of her child as a person to post something like that publicly — but I really see her as someone who is frustrated by her own limitations, and this kind of public rebuke is exactly the kind of thing that reinforces her unhealthy ways of relating to the world. How much more helpful would it be if her difficulties could be acknowledged in a helpful, compassionate way? Maybe not much, but all this adversarial interaction is probably not helpful to her or her kids.
My compassion is for the child. And I say this as the mother of a nonverbal daughter with ASD.
Compassion for ugly feelings toward a child who is acting out through no fault of his own, and likely the fault of his needs deliberately not being met by his mother, is not helpful because it normalizes and reinforces those feelings and attitudes. It affects how he is treated through the course of his lifetime and will hurt him in every way. Trust me, I’ve seen it.
I don’t know any parents of ASD or disabled kids who don’t have moments of ugly feelings. Hell, parents of typical kids have moments of ugly feelings as well. It’s how you deal with the ugly feelings that makes the difference.
I understand what you mean, but I don’t think this woman is having a flash of annoyance. Her tone and willingness to put this on her widely-read blog suggests that she has very strong negative feelings towards her child and children with parents like that struggle mightily, at best.
Putting ugly feelings online for all the world to see is dangerous for a child with any intellectual disability or mental illness. Calling your child violent, with impulse control problems and violent tendencies leads to a series of choices and events that can get him killed in a residential treatment facility or by police. This is not hyperbole.
Oh, I wasn’t addressing Gina specifically. I’m pretty sure she has a personality disorder. I’m only bringing it up because people are making a lot of sweeping statements about how you’re supposed to feel and behave when you have a kid with a disability and I think it’s important to remind everyone that parents of challenging kids are not superhuman. They’re just doing the best they can in a tough situation.
I agree that her attitude is harmful and should not be encouraged. I just wonder, since she is his parent, if this kind of public rebuke will be helpful or harmful. Compassion doesn’t mean accepting everything a person does, but it might mean acknowledging that parenting can be difficult –we all struggle sometimes– and suggesting some alternate ways of dealing with frustrations. She always strikes me as someone who doesn’t have a lot of good internal resources for dealing with things, notably when people don’t agree with her on everything. I wish she would keep her personal struggles out of the public sphere because I think all this adversarial interaction is not good for her mental health, and by extension, probably not for her kids either.
How on earth did this post become about you? Again?
Stop derailing. No one cares how you gave birth. This is a post about mothers oversharing about their children.
Smeather here commented that the post was a little mean. I agreed. I believe personal attacks lower the level of this blog, of any online place that claims professionalism and unbiased information. I was personally insulted by the blog author, too. Hence the link.
Sometimes the only way to get someone to question their terrible life choices is to publicly call them on their bullshit. With any luck, Gina will be sufficiently ashamed of all the negative attention she’s getting to be inspired to re-evaluate her behavior.
I was a quirky kid, and my parents were emotionally abusive. Everyone knew it. All the adults in their lives and my life could see how they acted, and could see how it affected me, but no one ever said a damn word because “that’s not what was done” in the town I grew up. It would’ve meant a lot to me had ONE person come to my defense EVER and said, “Why are you beating up on that child? Why can’t you control your own reaction, seeing as you’re 35 and she’s 6?” It’s not the job of everyone around Gina to tiptoe around her precious feelings (what about her SON’S feelings??) She needs to know when she’s out of line, and with any luck, she’ll affect behavior change in herself instead of throwing up her hands and saying “This damn aspie is ruining my life!”
“You could have written a post about parenting without mentioning her name. She would have gotten the hint without the punch.”
I doubt it.
Positive reinforcement requires something to reinforce. TFB’s published efforts to help her son include bringing a therapist into her home (she drooled over the therapist on FB and didn’t mention what the therapy involved), whining about dealing with the school, and complaining about J’s behavioral issues more than once.
If she at least talked about parenting strategies that she used to specifically deal with behavioral or sensory issues, then we could cheer her efforts.
My children sometimes push me over the edge, although they don’t have Asperger’s. They are just normal children.
I do think it is acceptable to seek advice on forums and message boards. I did that not long ago, on the matter of sibling fights. Some of us don’t have many friends where we live, or are simply too embarrassed to confess what is happening in our homes to someone we know (I believe, by the way, that this is far more revealing than a discussion on an anonymous forum).
Posting on FB, however, is another matter entirely, because people there know me in real life, to some extent or another.
There’s something that irks me about the very nom de internet GCC uses: “the feminist breeder”. It seems to reduce her to a biologic function, and in terms that one uses for animals rather than humans. She obviously thinks it’s cute, though. But it indicates to me that she sees the world through an odd set of labels: “I’m a uterus.” “I’m a breastfeeder”. “I’m a homeschooler”. The labels are important; the person attached to them is defined by them.
Two of my children have learning disabilities, one quite severely, but I don’t introduce them by their disabilities but by their names. If mentioning the disability is relevant to a conversations, I’m not shy about mentioning it [and neither are the now-adult children; in fact, since it gave them certain benefits during their school careers, they often offered the information spontaneously] but there is an obvious difference between someone who holds out his hand and says “I’m dyslexic, glad to meet you” and someone who says “I’m Hagit, glad to meet you. I don’t read much; I’m dyslexic and reading isn’t easy for me” when you offer her a book.
“Breeder” is slang, originally used by childfree and/or homosexual people to describe someone who is heterosexual and reproducing. http://www.urbandictionary.com/define.php?term=Breeder
So what she’s trying to do with that name is be like, “look how feminist I can still be while being a heteronormative suburban housewife!”
Except, you know, she isn’t.
My mother was out of the workforce entirely during my early childhood and worked part-time until my teens. She also treated her son and daughter the same in all the ways that matter, developed all of our skills, and, as I grew older, helped me question both the “feminine mystique” and the myth of “having it all.”
She is a feminist and was one the whole time. This lady, not so much.
Why isn’t TFB a feminist?
For one thing, because she judges other women by the way they’ve chosen to make their lives work.
That and she judges them by how well she feels their vaginas and breasts have performed.
If she were a feminist she’d understand that other women had done exactly the same sort of research that she’d done and come to a different conclusion in the matters of choosing a c-section or choosing to formula feed and that these choices should also be celebrated (or not – to be honest don’t “celebrate” as in woot I fed the baby – save “celebrating” for something big and worth getting excited about).
Because a feminist does not coerce other women in a vulnerable situation to do what they think is best. Like if a feminist were a doula and a woman in labour was screaming in pain for an epidural, a feminist would have never “explained that she had not wanted one and also told her that she was near the end”.
A feminist who is a doula would never be “probably the only reason why someone had a natural and drug free birth”. A feminist breeder who is a doula on the other hand…
Oh, I totally agree, just explaining her moniker because Antigonos might not have been familiar with the slang.
It’s also not very feminist to love your children according to how naturally they exited your body.
My mother LOVED that I had hearing loss. She reveled in the attention that she got as the mother of a deaf child. She loved the praise and adulation that she got and based her identity on that.
It was an incredibly hard way to grow up. She completely ignored several huge needs I had growing up because of how wrapped up she was in my hearing loss, to the extent that I had a learning disability go by undiagnosed.
Mine used to (and still does) seek attention for my disorders, even to the point where she claims that we have a very close relationship despite us not talking and despite the fact that she has accused me in private of faking them.
Narcissism?
I’m one of those people from the Aspie side – i.e. I have Asperger’s and I call myself Aspie. It’s so much easier to say Aspie sometimes because it explains quite a lot in one word. I figure I live with it and I can call myself whatever the heck I please. But I’m an adult and it’s my choice.
I think if he’s got violent tendencies then there is something wrong in his environment (not necessarily his mother’s fault), or he has additional issues that have not been discovered yet. But I guess she does need to vent somewhere…
List of places where Gina could vent that wouldn’t hurt her son and publicly shame him:
– To her husband
– To her friends (if she still has any)
– To her therapist
– To HIS therapist
– To a Parents of Children on the Spectrum support group
– To an online support group under a fake name
– To herself as she does something productive with her energy, like running or throwing clay on a pottery wheel
– To a houseplant
– To the dog she constantly complains about
Everyone needs to vent somewhere. “Somewhere” should never be to 20k+ followers online, when you identify your child by his full name, school, and city.
I have a family member who some consider to have a disability. When I reference him I put the explaining “he’s ___”. Otherwise he’s just his name. That’s not being politically correct, it just makes sense. But we grew up together and are now both adults. I’ve had many years to “get used” to the idea. I don’t remember what it was like in our family when the diagnosis was fresh. It just seems obvious that his role in our family and what he does in his life is more important than the “disability” label.
OT, but anyone care to comment with your Baby Friendly hospital experience? This nurse thinks BFHI is awesome and believes anyone who disagrees is an outlier, because none of her patients have ever complained about it. I know the topic comes up here regularly, so I figured some of you all might be interested in sharing your opinions with her:
http://adventuresofalabornurse.wordpress.com/2014/05/20/our-transition-from-an-ldrp-with-a-traditional-nursery-to-a-mother-baby-unit/comment-page-1/#comment-630
If she were my nurse, I guarantee we’d be likely to have some non-friendly words, unless she’s able to respect that I chose not to breastfeed my son and will make the same choice with our baby girl when she arrives in a few weeks. Maybe she would be great about it, but everything I’ve heard about baby friendly hospitals tells me I’d be miserable in one. And you know what they say, if mama ain’t happy…
Our hospital was not “baby friendly” designated. However, it provided all the things that I hear about as being “baby friendly” options. For example, rooming in was allowed. Breastfeeding was absolutely encouraged, with a full time LC on staff. However, they also gave us free samples of formula.
As to whether everyone thought it was great, all we have to do is to look at the number of babies who DID room in. As far as I could tell, none of them did. They all went to the nursery at night.
Not because they were forced to, but because the parents CHOSE to do it that way. Consequently, I can say that, were rooming in required, as in a BFHI, it would run contrary to the parents’ wishes.
Do you think they would have been delighted?
I especially like the part about how women who think they should send the baby to the nursery aren’t “educated.”
Right. The lady who just had a c-section, who is literally tied to the bed with a pair of compression socks, a catheter and an IV of pain medication, whose husband went home to take care of the older kids, or is deployed overseas, or is no longer in the picture, she’s uneducated when she asks for someone else to take the baby for a few hours until she can get up.
Educated does not mean indoctrinated, people.
It’s not an issue of how they “should” send their babies to the nursery, but that they do it because they CAN. From there, see the rest of your comment, or the great comment by Jessica S (who I still am convinced is my wife posting behind a pseudonym) above.
Hehe… She sounds like a wonderful woman! 🙂
You’re right, should is the wrong word there.
Here is my answer to that:
“I am sorry, but your problem seems to be that if your patient doesn’t agree with you, she is not “informed” enough.
I have a nurse friend who works in oncology. Her personal belief is that if the cancer is very spread and there is nothing much that can be done, palliative care is better. She has a lot of research to back it up and strongly believe it.
However, she doesn’t try to “inform” the cancer patient that they really don’t want that round of rather nasty chemo that could give them only 3-6 months. She doesn’t believe that just because they don’t think like she does they are not “informed”. She would never be happy that her unit had stopped giving aggressive chemo to terminal patient because she believe it is right.
I would suggest you to think about it.”
Why people in L&D seems to be immune to the thinking that other specialization have is beyond me.
If NCB types are like they say they are for female autonomy and rights of parents, should they not care at all why any mother chooses anything, either to breastfeed and not be separated from her baby or to formula feed and have the baby 24/7 in the hospital nursery? Same goes for c-sections, they should be cheering reasonless tummy-tuck maternal request ones the same way they applaud any other birth choice. But no, only ‘uneducated’ mothers do these horrible things to their kids.
This – how do they not see this? I am as “educated” in birth as they are (ie read stuff for lay people) and made different decisions then they did. That’s not anti-feminist I’d have thought?
It is an ideology based on the premise that female bodies were made to give birth. Where I come from we call that patriarchal backward thinking, not ‘educated’ feminism.
It’s nice to see how many commenters are pushing back. This is what I said:
“I think it’s barbaric to assume every woman is going to want to spend every last waking moment with her baby during her stay. Talk about setting women up for postpartum mental issues. That’s great that you wanted to be with your baby 24/7. I would’ve liked the option of having a break if I needed it. I don’t know why that doesn’t earn me, or any woman like me, a mother of the year award: I understood that I’d have more than enough time with him when we got home. What I needed in the hospital was to make sure that *I* was ok. If hospitals do away with the nurseries b/c it’s too costly, fine. I can accept that completely. But don’t couch it in spurious notions of “baby-friendly”, which is just a whitewash of mother-shaming.”
Gah! (Sorry – I keep responding to you, but I’m all riled up now! :)) She actually had the gall to say:
“I think it’s weird that a mother wouldn’t want her baby in the room.”
WTF? Then she goes on to say, without a shred of evidence, that babies who are separated from their moms after delivery experience more pain and cry more often. Then she kicks us “weird” mothers even further: “I would never subject my baby to that just because I was exhausted and my husband needed sleep.” Well, la-dee-dah, you sanctimonious bitch. I’m stunned. I’d request a different nurse in no time flat if I ever encountered the likes of her.
OK, so now it’s becoming even more clear. It’s not that everyone thinks it is awesome because she doesn’t hear any complaints. It’s that anyone who doesn’t think it is awesome is just weird or uninformed.
So it’s “BFHI is awesome! Everyone thinks so, except for some uninformed weirdos. All the real, GOOD mothers love BFHI”:
It’s real easy to assume that everyone agrees with you if you discount everyone who doesn’t.
A classic “no true Scotsman.”
Yeah, there was another commenter (I think she was also a nurse) spouting the same drivel, and she actually told someone they must be an “outlier”, b/c all the research points to mothers wanting this or some crap.
It’s the tedious thing again:
*you must be a good mother at all times, regardless of whatever else is going on-not good enough, not adequate, but good
*there is only one way to be a good mother.
And no doubt one gets the vibe, while in hospital under her ‘care’-or is that ‘control’-that complaint would be frowned upon. Lovely.
I agree–when I encountered a sanctimommy nurse like this who said scoldingly: “Don’t you wannt to be w. your son on his first day of life?” I replied, trying as hard as I could to avoid expletives: “I will have the rest of my life to love him, but I will be no good to him right now unless I get some rest!” I think she was doubly ticked because I was a scheduled c-section & she obviously thought I was in the “too posh to push category” despite the fact the OB told me that under NO circumstances would he attempt a vaginal delivery. As I was being prepped, I heard her say snidely to her colleagues, “THAT’s grounds for a c-section? I guess they give them to anybody these days.”
It’s nice to be baby friendly, but what about mom friendly as well? And don’t even get me started on the three (yes,, three, all billed for) visits with an LC despite the fact that the meds I took prohibited breastfeeding. She actually asked if I REALLY needed these meds for my epilepsy,, despite the fact that people have been known to die in epilepsy (as in the recent death of British actor Rik Mayall). I asked to be discharged early—not bc I wanted to, but bc at least at home I could relax!
Uh, I get that meds for seizure disorders might also be meds for ‘other’ disorders – but if you really MUST question meds, please ask the doctor who prescribed them.
No kidding…I had actually asked my dr. beforehand if there were other drugs i could take, but he warned there were risks to all of them and that my current combination was safest, and had been successful in keeping me stable. I told her that…seriously, what would have been the point of breastfeeding just so I could drop my son on the floor during a seizure? Ideology, h/r well-intentioned, shouldn’t get in the way of common sense.
The PDF of deaths and near deaths associated with bedsharing in maternity wards is so sad.
agreed. two nights ago i started to roll over onto my baby for the first time ever. we’ve been sharing a bed (part of the night, NOT my first choice) for over a year now. he’s one, and a big bed hog. he yelled, and i rolled back over. i breathed a sigh of relief that it hadn’t happened until then.
re the nursery, when he was born, i kept trying to give him back to the nurses, and they kept refusing to take him.
Agreed. It’s easy to see how this can happen. I roomed in with my babies (my choice), and had an easy post-partum recovery, but still had to watch myself so that I would place the baby in the bassinet before I got too drowsy. If I had been a little weaker or more tired, and there was no option of a nursery, well I think that’s negligence.
The argument of “you will have to cope with the baby alone when you get home so you’d better start now” holds no ground. Those first few days of recovery make a huge difference, and you can go from exhausted wreck to good as new in 48 hours.
Even given this, I don’t understand the premise.
Why is it ok for a father or other relative to come to help take care of the baby, but not a nurse? Does she not think nurses will be adequately caring (pretty insulting to nurses, I’d say; ours were all wonderful with babies)? Or that the baby will care whether it is the father or the nurse?
It’s not like the baby will know the difference between having a diaper changed with mom on the other side of the room or in a room down the hallway.
The whole concept of “Dad coming in to give mom a break is baby friendly; nurses doing it is not” doesn’t make any sense.
And honestly, dads are great, moms are great, grandparents are great, but these people are probably not nurses who work with newborns on a daily basis. There are two reasons why hospitals used to keep women for weeks after the birth, and one of them is the baby.
During the first few days of life, there are a lot of things that can go wrong with a baby, and some of them are pretty subtle. Babies in their first week are NOT like older babies who have fully adapted to life outside, and even a tenth-time grandmother might not recognize the early signs of trouble, so a few extra hours under the nurse’s eye may be a good thing.
Now, rooming in is fine for healthy babies if the family wants it, but the nursery may indeed be better in some ways.
It’s probably they’re afraid the nurse will give formula to the baby without the parents’ permission. Or even *gasp* sneak in a few vitamin K shots.
But Dad will just put beer in the bottle. So that’s ok.
(actually, I’ve heard accusations of such, but am not sure I really believe it; I’ve certainly heard moms say they couldn’t trust dad to not do this)
There should be no basis for such fear, not in a well-regulated hospital. Parents should have the authority to determine how their child will be fed. If parents choose to formula feed – their choice. If there’s a “breastfeeding only” sign on the baby’s bassinet – it’s breastfeeding only (unless breastfeeding clearly doesn’t work, in which case the mother must be notified. You don’t just give formula because you decided it’s for the best).
This is actually a really hot-button issue with me, because with my first baby, I was convinced by the hospital staff to leave her at the nursery for her first night so I “could get some rest”. I was reluctant, but agreed after the nursery nurse promised she’d wake me up to breastfeed. There was a big “breastfeeding only” sign on the bassinet.
I went to my room. I tried to sleep. I could not; every few minutes, I’d wake with a beating heart, gasping, thinking “where’s the baby? Where’s my baby?” – I knew in my mind that she’s safe in the nursery, of course. I didn’t think anything actually happened to her. I see it as a purely biological reaction to being separated from the baby… obviously I needed to be with her. So, after about 4 hours of such fitful sleep, I rose and schlepped to the nursery, to let the nurse know I just can’t rest without the baby within reach.
And what did I discover upon arrival? That the baby had already been given formula. Why? The nurse (same one I talked to earlier) hemmed and hawed and eventually confessed that “the baby cried and she didn’t want to wake me because mothers really need their rest on the first night”.
Slice it however you want, this was undermined authority. It was actually dishonest. I was misled. I don’t care if she thought one bottle won’t make a difference. The decision wasn’t hers. It was my baby.
Need I mention I immediately took the baby out of the nursery and never let her out of my sight during the rest of my stay? And that I did the same with my second daughter? I intend to room in this time around, too, if all goes well.
I was in the opposite position, in that we formula fed from the start, but holy moly – I would be livid if that happened. For the very fact that it was not her call to make. It was judgement call at best and it was a bad one. It’s nice to see concern for the mother’s well-being but pulling stunts like that is exactly the kind of fuel these well-intentioned but ill-practiced initiatives use.
That used to happen a lot years ago. There may be places it still does. And it IS awful and it is a betrayal in my mind of the patient’s trust.
Yep.
With my last baby, my husband was home with our big kids, and it was just me at the hospital with the new baby. Thank goodness for the night nursery!
Also, hospital beds are not designed for co-sleeping!
LOL, they are barely designed for *sleeping*… by the second night, when I wasn’t so exhausted anymore, I could barely nod off in that bed. Couldn’t wait to go home.
Excellent. Wish I could upvote this 100 times. 🙂
She made me so irrationally angry. Her complete dismissal of anyone who disagreed with her was insulting. With an attitude like that, I hope she gets out of LD. I had a nurse like her when I had my fourth, and it was awful.
Having read more articles from her blog, the thing that leaped out to me is that in a few places she openly admits to lying about her patients’ progress in labour because she doesn’t think the doctors will make decisions that agree with hers if she tells the truth (and, by implication, she knows best). As an Australian GP obstetrician who works with wonderful midwives (who tell me the truth about my patients!), I’m less surprised that she dictates to her patients what they should do and how they should feel, and more surprised that she hasn’t yet been sued or fired. I only hope she doesn’t drag her colleagues (medical and nursing) down with her when the inevitable bad intrapartum outcome happens by telling them one thing and documenting something else in the records.
Got a link? I’d like to read it.
This is one of them (about halfway down): http://adventuresofalabornurse.wordpress.com/2014/04/18/a-day-in-the-life-of-an-ld-nurse-on-a-good-day-according-to-oprah/
The other one I’m thinking of is http://adventuresofalabornurse.wordpress.com/2014/04/02/this-is-labor-and-delivery/
The fact that both these posts are ‘humour’ is not lost on me but neither is the tone of the captions, which have the ring of consistency and familiarity about them. I kind of let the first post go by as a joke but when I saw the same thing again it made me take notice… Anyway, her practice is her practice, but I’m thankful to work with midwifery colleagues who trust me enough to be honest with me – and then to make their suggestions if they don’t feel my plan is right.
it’s SO COOL to lie about a patient’s status. The stock photo of a lady wearing a green shirt makes it cool! “Love it!” as the comments say.
I know!! The smug smile just underlines how much she TOTALLY knows what’s the best thing to do.
I get that it’s humor, and the one about scarfing down food so you can run and catch the baby is funny, but yeah, the judgment makes me uncomfortable. So she has an issue with patients who have no interest in NCB? Who accepted a little formula, or who had no intention of breastfeeding in the first place? With obstetricians who are less committed to natural vaginal delivery than she is? Yikes.
Yay, another Aussie!!
She’s up to 80+ replies to that post and she still doesn’t get it.
I look around her blog and there is so much that is right there that I am really surprised she isn’t listening here. It’s such an opportunity, really, to not change in a direction that will be one more mistake in maternity care,
Yeah, I’m sure there are good intentions there, but she’s really not open to re-examining her views about this.
I think she’s deleting comments. There were over 80, now it’s down to 70-something.
I am to the point where I think this is a completely meaningless assessment.
I don’t care if she intends to be an idiot or not, that doesn’t change the fact that she’s wrong.
Think of child abusers who believe they are actually being constructive. They have “good intentions” too. Should we cut them some slack because they “mean well”? Not in the least.
And if she is deleting comments, that goes beyond good intentions, and is deliberate.
She mentions respite care being available (but she’s mentioned that she’s never encountered a situation where a woman wants it). But if there’s no nursery, how much respite care can really be available? I have read stories here of RNs who were kind enough to take the baby to the unit desk for a while, but that’s clearly not the best for safety, as RNs cannot be at the desk all the time.
I think the thing that bothers me most about the post is not the language–I have no strong opinions on person first versus otherwise–but the blaming. There is no hint anywhere that TFB understands that she influences her son’s behavior and that his acting out might be a sign that she needs to reflect on the family and maybe get him more help. Yes, people with AS can be frustrating and do act out and she’s not going to be able to prevent every incident, but could we please get a little acknowledgement that the child is stressed and trying to figure the world out with very little help?
My mother resembles what you describe. I don’t follow TFB and don’t feel like assessing her behavior towards her son based on this one comment. But my mom just looooved that she had a diagnosis she could blame for everything, and if she spent any time considering how my behavior might be a response to the way she treated me, I’ve never seen the results of that consideration. She still feels that she did the best she could with a very difficult child and any attempts on my part to point out problems are invalidated because I haven’t been a parent for long enough. I imagine that when my kids are older, that will change to “You’re not allowed to judge me because your kids aren’t as difficult as you were”. In sum, it’s all about her.
I have several complicated thoughts.
Proper diagnoses are a step up from automatic parent-blaming. If a six-year-old is being raised in a remotely normal environment (not extreme criminal abuse or neglect) and is nonverbal and not potty trained, it’s pretty clear that there’s something going on beyond bad parenting. Other situations are less clear, and I wouldn’t trust the judgement of anyone but a professional who’s done a thorough evaluation.
On the other hand, a diagnosis does not absolve the parent of responsibility. In the case of a child with a health or development issue, that means doing what’s best for the child you have, not the one you wanted, and teaching your child to live with the brain and body he has. If a child had asthma, for example, it’s not due to bad parenting. However, someone who ignores the problem and whines about it is not being a good parent. A good parent will seek out appropriate medical care and try to modify the home environment to reduce triggers.
I’m sorry your mum is that. The corollary is: “Mum, you’re not qualified to judge me because my upbringing was made more difficult by my mother.”
Having said that, I do think every parent does their best. Sometimes it isn’t good enough.
“Aspie” is a step up from “My csection kid”. Having a diagnosable problem is probably the best thing that could have happened to him other than having a different mother.
Not if she treats him as flawed for having the diagnosis. Not if the diagnosis is not actually descriptive of what’s wrong with him, since the DSM doesn’t exclude the possibility of a behavior being a reaction to the environment, and his acting-out is instead a response to his environment.
I don’t know if this is the case, but it’s what happened to me growing up and it is possible it could happen to other kids with diagnoses, particularly if mom is rather self-involved.
Feeling frustrated: totally normal and warranted. Blasting it over the internet where it can be traced back to her son: totally not cool. She absolutely needs and deserves an outlet to express her frustrations, but the outlet she chose is inappropriate and unfair to her son.
How much support can she realistically get from posting on facebook? A bunch of “Go Mama!” and facebook “likes” does not really mean all that much in the scheme of things. Some close supportive relationships that she can talk to in private and help her get assistance/respite would be a far better investment of her energy.
For added collateral damage, consider the effect this sort of post has on others with Asperger’s. I admit that I looked at it and wondered how often my parents thought something similar–but simply had the good taste not to shout it out to the listening world (not to mention the lack of opportunity given that I was a child in the pre-internet age.) I expect quite a lot of children and adults with Asperger’s or similar conditions are wondering much the same thing. Not to mention the implication that someone with Asperger’s is innately inferior and exists only through the charity of “normal” people.
“For added collateral damage, consider the effect this sort of post has on others with Asperger’s.”
…or on the kids’ siblings.
There are two types of TFB&child posts.
“Isn’t my kid adorable!?”
“My kid is driving me nuts.”
I tend to prefer
“Parenting – the adventure.”
Or on people who don’t have any personal experience with the disorder other than TFB. Now they think that people who are not NT are violent and will carry that bias with them in any future interactions with people.
Definitely. I remember there being a situation that was all over the news about someone or another who was supposed to have Asperger’s (though there was no evidence of that beyond media speculation) who had run amok with a gun (sorry, can’t remember which “amok with a gun” story it was–just too many of them in the US). In the comments on one of the news stories someone wrote “let’s go find someone with Asperger’s and set him on fire”. Because, you know, neurotypicals are never violent.
I’m less concerned by the term “aspie son”, and more concerned by the total disregard she seems to have for the characteristics of his condition, especially for someone who calls herself a “public health scholar”. One of my children has Asperger’s, and there times we just have to adjust how we do things in our family because he can’t handle the stimulation/noise/etc. For example, take the Fourth of July. My husband took two of our kids to the fireworks, while I stayed home with him (and our toddler). He hates fireworks and is convinced that the noise will deafen him. So, we don’t force him to go. It’s not like I can convince him otherwise, so we adjust. Gina seems to think that her son reacts various ways as a personal affront to her. I mean, if she had a child who was diabetic, would she post all of these sighing posts about how she’s frustrated that when he eats her triple chocolate brownies she needs to spend the next five hours monitoring his blood sugar so she’s just decided not to make them anymore?
Oh wait, I forgot who we were talking about.
I just went to her FB page, and I think hell froze over. I agree with her about Hobby Lobby. I guess the adage about a stuck clock really is true.
I usually have no patience with Gina but I have to say that aside from her expressing her feelings on Facebook, her emotions about her son aren’t out of the ordinary, especially since it’s a recent diagnosis. My son’s developmental delays have really challenged us as a family and there are times when I do feel pushed to the edge. It’s gotten better with time, partly because we understand him better and partly because we are seeing a lot of progress and we’ve learned to appreciate all of the things that are wonderful about him, quirks and all. When you’re reeling from the initial diagnosis, the challenges can feel endless. You’re still figuring everything out at that point. So yes, Gina’s an ass and a narcissist, but not because of the emotions expressed in this post.
But do you blast it all over the internet for strangers to see under your real name? Would he be able to find things you said in moments of frustration in the future? I think that’s what sets her apart.
I participate in an online parents group but I never post about it on Facebook. I sometimes wonder if I’m oversharing online. OTOH, I don’t have very many people IRL I can talk to about what’s going on. It’s amazing how uncomfortable people get when your kid diverges even slightly from the bell curve. It’s a relief to talk things over with a group of people who get it.
So I guess what I’m saying is I think it’s ill advised to share this stuff on Facebook and Gina very likely has a personality disorder, but in general I don’t slap parents for discussing these issues online.
I agree, I think if you can reach out to people who truly understand what you’re experiencing as anonymously as possible, that’s a great thing. If you’re leaving a permanent, searchable record that your child could easily find one day, that’s unwise and cruel. And if the child doesn’t find it, his future employers/friends will, which in some ways is even worse.
Your son got better over time? A number of Gina’s FB friends insist it was essential oils that solved all their problems. (I think/hope this brand of religious woo fervor hasn’t reached our fair Aussie shores yet..)
It did a few years ago, unfortunately.
Someone tried to convince me that essential oils change your DNA and that’s how they work to fix things for people.
I’ve heard of that too, along with various claims about Manna-Bears and Ambrotose.
Calling your remedy a mutagen is an odd way to encourage people to use it. I thought GMOs could harm your DNA so that’s why they are Satan.
Ahh but these are natural, and beneficially mutagenic! (or some other such nonsense)
Oh really?I’ve only seen US (or presumed US) internetters preaching the essential oil gospel before. Don’t destroy my hope, Mishimoo!!
I’m sorry! Some of the mums in the rural town I was in nearly 10 years ago swore by the Le Reve ones for everything from Eczema to Muscular Dystrophy. My OT mother recommended them as a complementary treatment for a bit and might still do so. I’m in a much bigger town, and still hear of it being used for allergies, ADD/ADHD and so on.
I have anxiety. Essential oils as part of rituals (meditation, long showers, etc) can be helpful. But changing your DNA? Curing autism? Give me a BREAK!
Essential oils applied to the brain stem, mind you.
As someone who grew up with a sibling with Asperger’s, this is exactly what I thought when I read this. I remember how hard things were at times (though to be honest, I’ve blocked a lot of it out). It was hard for me as the younger sibling, but my parents were constantly stressed to the max because of my brother and his unpredictable behavior. Her frustration is valid. But, I also don’t approve of putting this on facebook where it can be traced back to her son. It’s not fair to him and it’s not right.
Such odd wording – “pushing me over the edge.” I can imagine going through a variety of emotions for a variety of reasons, but pushed over the edge? I’m not sure what that means. Has she “had it” with him? If so, what’s the next logical step in their relationship?
That phrasing worried me too, especially since there have been a few cases of parents injuring/killing their kids that are on the spectrum.
To be fair, I just remembered that this is the woman who thinks a screed is a polemic, so I shouldn’t read too much into it…
Even so, I’m always a little suspicious of people who exhibit narcissistic behaviours. Especially if they have a large fanbase
Some people with Asperger’s do use the term “aspie” to label themselves in an affectionate, reclaimed word sort of way, (in just the way some lesbians refer to themselves as dykes etc.). I hope that is the feeling she is trying to bring to this. It might be based on her use of the term “breeder” for herself. If that’s the case I hope her son feels the same way she does about it, because labels coming from an outsider may not be received the same way as when they come from yourself.
I think that’s part of it, does she have the right to give him that title? But she only calls him “Aspie son” when she’s complaining about him. Like I think it’s just easier than for her to say my son Jules, who has autism, did this today as a way to explain why he behaves the way he does, but I just don’t know that it’s necessary especially since we know his name. It just only seems to be used as a time to complain about him. What a shame :(.
It may be what she’s trying for, but it doesn’t work. It’s like the difference between naming your band, which is made up entirely of African-American people, NWA and calling your AA friend, spouse, child, etc the N word. Some labels should only be used by those who are being labeled.
It’s the difference to me between saying “My child with Down syndrome” and “my Down syndrome child.” The first identifies her as my child, who happens to have Down syndrome. The second makes her an Other, identifying her by her disability. (And her brother, who very likely has Asperger’s, or at least has many of the characteristics.)
Also, it’s the individual with the disability that gets the choice of how to refer to themselves, not the able-bodied. That’s why hearing impaired is out of favor again and hard of hearing or deaf should be the default unless you’re told otherwise. How hard is it for her to say “my son with AS” vs “my aspie son.” It obviously isn’t harder, but there’s huge meaning behind her choice of words.
Really? I call myself hearing impaired because it seems to be the best description I can muster – I’m not deaf because I can hear ok-ish with hearing aids, I’m not “hard of hearing” because that makes it seem way harder then I want it identified as. Funny how these things change. I even hesitate to think of it was a disability, although I’m trying to change my thinking on that because it does make sense that disabilities are not just for “other people”.
You’re really denying (or just not aware of) the fact that there is a
*large* movement of self advocates that identify as “autistic” or
“aspie,” and really detest “person first” language. It’s *not* just as
simple as “reclaiming the term” and it is *not* comparable to taking a
purposely offensive term “back” in some move of minority empowerment.
There’s nothing wrong with being autistic, or having aspergers, and many
self advocates find it ableist that able bodied people seem obsessed
with separating disabled people from their disabilities. I’m not saying
it’s not a polarizing issue- I’m saying it’s really not as simple as
you’re making it sound.
Using aspie or autistic as self labels is indeed an outgrowth of the reclaiming movement. Note the similarities:
#1 Lesbians said to themselves “There is nothing wrong with being a dyke so I’m not going to view the label with shame. I’m not going to insist upon a more “polite” label, because there is nothing wrong with being a dyke. Being a dyke can’t be separated from who I am. It’s only the straights who are so obsessed with my sexual orientation”.
#2 Many self-advocates on the autism spectrum have decided that “There is nothing wrong with being autistic so I’m not going to view the label with shame. I’m not going to insist that person-first labeling is more “polite” because there is nothing wrong with being autistic. Being autistic can’t be separated from who I am. It’s the able bodied who seem obsessed with separating disabled people from their disabilities”.
You seriously don’t think that #2 is an outgrowth of #1?
Aspie is a pretty friendly term. It’s not a “reclaimed” slur.
You’re right, it’s not a reclaimed slur. But in a large part that’s due to chance. Asperger’s became a known disorder after the time when reclaiming of labels became a trend. It also became known during a time when it was no longer seen as acceptable to call someone by their diagnosis (i.e. after person first became the official preferred way). If Asperger’s had been widely known in the 1950s, it likely would have been a slur. While it might still have been reclaimed, I’m sure it wouldn’t seem quite so friendly.
It was bad enough when she was blaming this kid for the fact that he was born by c-section. This is worse.
There’s someone in the comments saying her granddaughter has behavioral issues and they apply an essential oil “to her brain stem” every night. Alrighty then. Guess they’re doing home surgery every evening to get to her brain stem? Seriously, that’s a new bit of woo to me!
I wouldn’t be surprised if this treatment did work. Not because of essential oil and clearly not because they were reaching his brain stem, but because having an established routine (i.e. every night we rub your neck before we get ready for bed) can be really helpful for children.
A lot of the “alternative therapies” that I have seen parents using with great success don’t work because of the therapy but because they force the parent to have a strict routine and schedule in order to apply the therapy properly. They think it’s the magic oil or special diet that changed things when, in fact, it is the structure of the routine which made the difference.
This makes total sense. I teach students with profound disabilities, and the past several years, my classes have consisted mainly of children on the autism spectrum…the routine and repetition is definitely part of why these things seem to help.
With children, routine and repetition helps, period. My granddaughter has come to expect that when savta [me] babysits, we say the Shema together at bedtime. She has now begun asking her parents to do it. Ritual, to a three year old, gives a very comfortable feeling of security. How much more so if the child has a disability.
Yes–I also think there’s a lot to be said for doing ANYTHING (as long as it’s not dangerous or expensive).
There’s a movie called “The Horse Boy” where the parents treat their non-verbal, non-potty trained autistic son with horse therapy and a trip to Mongolia with a film crew to see shamans. I think that it’s not actually ridiculous that you would be able to move the needle just by throwing so much effort and stimulation at the kid, almostly independently of what the intervention actually is.
YES. My son is not considered disabled, but I cannot imagine defining him by the struggles he does have. He has a pretty bad stutter and speech delay. There are times that it is very difficult for me to patiently wait while he struggles to get out a sentence, especially since patience does not come easily to me. But all I have to do is remind myself that if I’m getting frustrated, he’s probably ten times more frustrated, and I have a chance to either add to his stress, or to try and help him gain confidence by listening and understanding. He has enough disappointments with others in his life – friends, teachers – who don’t always have the patience or time to wait and let him finish his thought, or they can’t decipher his mixed-up consonant blends. I feel like I want to provide that place of acceptance and understanding for him, to let him know that I will always make the time to wait, ask for clarification so I know what he said, and let him have his say when he so often does not get to. I don’t know what it’s like to have a child with Asperger’s (note to Gina: you have a “child with Asperger’s,” not an “Aspie child.” His diagnosis is not the most important thing about him). I imagine it’s difficult and frustrating at times. But a parent has the power to help a child gain confidence through their struggles. I wish she would try to see that and appreciate the opportunity she has to shower him with understanding.
I think the “Aspie son” is not the problematic part of Gina’s post. I have talked with people on the spectrum, and most of them called themselves “autistic people” rather than using the “person first” language (people with autism). They found their disability an important part of who they are, because it pervaded their entire mind and character, and without it they would not have been the same personalities.
Same guest as the original comment here. As others have said above – it’s one thing for someone to claim a term themselves, and another entirely for someone else to use the term. I have a smart, funny, feminist, geeky friend who uses a wheelchair. She has jokingly referred to herself as “crip” and “wheelie” in my presence, but I would never dream of calling her that myself. Even though her medical issues affect her spine, rather than her brain like Asperger’s does, she probably also wouldn’t be the same person she is without her background, because it’s shaped her life experiences. But that still doesn’t make it ok for others to define her solely by that. Also, my son’s stutter affects his everyday life, but he is my child with a speech disorder, not “a stutterer.” So to me, it would be one thing for the child to call himself an “Aspie,” but that doesn’t necessarily make it ok for other people to do so. YMMV, I will admit to not being very familiar with the Asperger’s/autism community.
No. You are not understanding. It is not the same. It is not using a derogatory term. It’s not the same as your friend making light of actual derogatory terms. You are ignorant (I don’t mean that in a negative way) of autism culture, and I encourage you to read actual opinions of “person first” language by self advocates. Your “It’s one thing…” claim is entirely off base – self advocates often refer to themselves that way, prefer others refer to them that way, and frankly find it ableist that those ignorant about the asd community are obsessed with separating them from their disability, as if that were some “bad” part of them.
Well, it really depends on the person. I’m autistic and disabled in several ways, and I hate person first language myself, but then again, it still depends on the person. Some autistic and otherwise disabled people *do* prefer person first language. It’s really all a matter of preference, I guess.
To me, it’s especially important in this case because it seems like she only refers to him as a person when she’s happy with him. It appears that when she’s angry with him, she refers to him as his disability, which should not be acceptable.
Obviously not all autistic people are going to feel the same way about the issue, as I have said. However, able bodied people who are completely ignorant of autism culture are making pretty harsh judgments about the use of “identity first” language, and making assumptions about why people would use it. The person I responded to specifically compared using the term “autistic” to using a derogatory term such as “crip” or “wheelie.”
This whole conversation has gone down before (https://www.facebook.com/BannedByTheFeministBreeder/posts/691892750849315), and just because you *want* to use this as part of your narrative about how much Gina sucks, you can’t. She overshares. She uses her son’s disability in a narcissistic grab for attention. But “autistic” and “aspie” are not slurs, and Person First Language isn’t “THE” default respectful way to refer to people with disabilities.
There’s no “note to Gina… It’s ‘person with Aspergers” << That's wrong. That assumption that Person First Language SHOULD be the way this woman is addressing her child is wrong. People are changing the debate mid-debate. I agree she overshares. I agree she demonizes her son's disability. I agree she's hurting her son, or setting him up for hurt when he inevitably stumbles across her writings about him later in life.
You're still wrong to assume First Person Language is the only way to talk about autism, and that there is something inherently offensive about using terms like "autistic" and "aspie."
Why do you have a problem with allistic people viewing autistic people as people instead of as a label?
And I read your links, and admitted I am wrong about person first language being the only respectful thing. I was wrong about that. So I’m not sure why you’re still being so aggressive about it – I’m listening, and trying to understand. And you have yet to address my question as to whether “Aspie son” is as acceptable as “autistic child.” Your links above all talked about language like “autistic person.” None of them addressed calling someone “Aspie,” which seems far less respectful to me. Again, I’m willing to listen here and to admit I’m wrong when you give explanations, so slinging angry accusations that “you’re wrong! you’re wrong!” over and over is less than helpful.
I do not mind being called autistic. I do mind being called Aspie. Not to mention, autistic and Aspie are also used as insults now. They are not inherently slurs, but they are used as slurs.
Also, in this specific case, like Mishimoo said, I find it very concerning that he is only referred to as a person when she’s happy with him, but when she is angry, he’s referred to as his disability.
Hey now. I don’t think it’s fair to say I “want to use this as part of my narrative.” I have been involved with other disability communities, and in many of them, disability first language is considered extremely disrespectful, so I don’t think it makes someone harsh and judgmental for them to assume that person first language is generally more appropriate. It makes me ignorant of the autism community, but as I said above, even within that community there seem to be mixed opinions. And so far I haven’t found anyone saying that “Aspie son” is the preferred way of referring to a child.
I’ll have to have a read too, because I don’t understand the appeal of identifying by disability before identifying as a person. It’s not something that appeals to me at all as a hearing impaired person nor as someone with a rare syndrome.
http://autismmythbusters.com/general-public/autistic-vs-people-with-autism/jim-sinclair-why-i-dislike-person-first-language/
http://autisticadvocacy.org/identity-first-language/
http://aaspire.org/?p=about&c=language
http://www.thinkingautismguide.com/2011/11/person-first-language-why-it-matters.html
Good places to start
OK, I read those. They’re interesting, and I can see the argument, although some googling showed that there seem to be people in the autism community on both sides of the debate, so I’m not sure how to phrase things without offending half the community either way.
However, all those articles are about calling someone “an autistic person” rather than “a person with autism,” and both of those seem respectful. None of them, unless I missed it, talked about referring to someone as “an Aspie” or “my Aspie son.” That just seems so dismissive to me, for a parent to reduce a child to a cutesy label referring to their disability. It just has the ring of a mocking name, to me. Or am I off base again?
I’m so happy you wrote this today. I too was upset at the label that she has thrust on him-and this is not the first time that she has referred to him by his disability. Being a foster mom gives me a front row seat to the many different ways that parents can hurt their children, and abusive parents/people can do immense damage without ever lifting their hands or fists.
Our children already face so many difficulties and challenges as they navigate their way through life, why would you add to that by publically humiliating your child in this way? Abuse comes in many forms….
My son recently had a playmate with a kid who had just recently been diagnosed as “on the spectrum”. He was actually playing with my son in an age appropriate way, but a bit less verbal. The parents were speaking about him, his behaviors, and their frustration right in front of the poor kid. I felt terrible for him. The diagnosis had taken away his human dignity, at least in his parents’ eyes.
People overshare on Facebook as it is. I’d never post something negative my child did that he could later read. I know I’d be embarrassed if I were to read posts from my Mum and Dad from back in the 1970’s when I was a bad-head little grade school kid. Nothing goes away in the digital age; I’m even careful when I post ‘cute’ stories about him, viewing them though the lens of the 16yo teenager that he will be one day.
So well said.
Neither of my children have disabilities, but as a teacher I have worked with hundreds of students who do. Each is an individual worth getting to know as an individual; each has strengths and difficulties, just as people without disabilities do.
Can you imagine if teachers or doctors talking about students or patients the way she talks about her sons?
>Can you imagine if teachers or doctors talking about students or patients the way she talks about her sons?
I can, actually. But not good ones. I have a teacher acquaintance who makes me uncomfortable because of how she routinely trashes students (not by name, but she tells anecdotes about how awful they are). But I also have teacher friends who see the good in every student.
This is especially true when there are so many negative stereotypes about the people one is talking about anyway. I teach college in the prison system, and I have seen first hand the effects of being written off and stereotyped from a young age. It’s part of why I’m constantly telling stories about how completely wonderful my prison students are: people who have the privilege to spend time with those who have unique ways of interacting with the world or uncommon life experiences really owe it to those people to be their advocates.
Couldn’t agree more, Amy. My son is autistic, and we have gone from him throwing poop around the house to him being in grad school (physics). The first fifteen years were one long continuous rolling behavioural modification program, with all normal life delayed until 1-2-3 Magic-style timeouts were completed. Both he and I are very lucky that his mother is a child psychiatrist. Despite it all I am immensely proud of him and wouldn’t want to wave a magic wand and have him made ‘normal.’ He is more fun and interesting just as he is. It irritates me no end when parents refer to their child being ‘taken away’ by autism (Jenny McCarthy: “Boom! Soul, gone from his eyes.”) No, that’s your child just as your genes have made him. It won’t help to complain about how unfair it all is, nor to blame half a hundred simplistic causes. The only way to redeem the situation is to work as hard as you can to make it all turn out as best as it can. That’s what parents do.
Does she have any actual friends she can talk to? Or is it all about the public support?
I think it’s more the whole ‘poor, poor, pitiful me’ thing she’s got going on.
Moms of children with disabilities do need support, and sometimes they need to vent. She’s just going about it in a totally inappropriate way. Making overly revealing public statements seems to be her only means of reaching out. It is really sad that she’s harming her child by doing so.
I do talk about the challenges – but I never reveal the worst things my children do because they are far more than their worst day.
Yeah, if you google, there are AWFUL stories involving parents of autistic children murdering them or doing murder suicides. It’s very much a thing.
I held my nose and read Wakefield’s magnum opus. The introduction is about a mother committing a murder-suicide against her autistic child and, horrifically, how understandable it was! Yeah, he’s such a great advocate for fams with autistic kids. Smh
This kind of thing is actually subtly encouraged by Autism Speaks, an organization that claims to be an autism advocacy org but is really an anti-austism org.
She’s busting taboos and forcing society to take a hard look at the difficult and ugly side of disability, don’t you know. Every time she posts something horrible about her children, such as how much they annoy her or how she loves being away from them, she gets a bunch of comments praising her for telling it like it is and being honest. Kindness and consideration for others, even her own children, don’t seem to be anywhere near as important to her as being absolutely 100% honest about her most uncharitable thoughts and feelings.
This sort of negative over-sharing does seem to be the norm within the mommy blogger genre, Heather Armstrong/Dooce being a well known example. She ended up alienating much of her family but eventually decided to take down some of her more hurtful posts.
It’s repugnant because the family doesn’t have a chance to reveal TFB’s flaws, or any other blogger’s, for that matter. Oh she’s “honest” about her shortcomings, but of course she’s carefully painting a picture of herself that only she balances and controls. I would love to see how she would like a counterpoint blog written by HH for example.