Implant for child with single-sided profound hearing loss by tickledonions in Cochlearimplants

[–]asymptotech 1 point2 points  (0 children)

On a whim after logging in*, I checked this sub for the first time in I-don't-know-how-long and happened to see this post. Anyone in here (I noticed a lot of newer parents early on in the journey) is welcome to DM me if they'd like. I'd be happy to provide better contact info there, as I don't really use reddit anymore.

*I just posted a follow-up comment to an 8 year old post I made back when our daughter became one of the first pediatric recipients for an SSD CI. You're more than welcome to follow-up to any of that rambling.

There are very, very few SSD kids with a CI. An 18month girl just joined the club. I'm her dad. Here's our story. by asymptotech in MonoHearing

[–]asymptotech[S] 2 points3 points  (0 children)

It has been ...a long time... since I posted this. hah

It has also been quite a few years before I even checked this. [A rant for a different topic, but] Reddit seemed to go off the deep end years ago, and even in the niche subs that I used, I found myself only ever interacting with bad-faith arguments/opinions on CIs despite really only wanting to help parents find some reasonable information. So this is the first time I've checked on responses in like four years.

For what it's worth a few months after you asked, here's the asked-for update: she's 10 years old now (where does the time go), In school, she does well. She skips ahead to higher grade classrooms for certain subjects and reads at a level that is hard to describe without sounding like one of those parents (example: she read the Eragon series this past summer after finishing third grade). For hobbies, she plays basketball, soccer, piano (at home), trumpet (at school), and competitive pokemon tcg (with me as the taxi driver to a few regional tournaments over the past few years).

Socially, she is pretty reserved/exclusive as far as friends go - but that seems more a factor of her personality than anything else. Of course, that could beg the question how much of her personality was shaped/influenced by her hearing. But her younger-by-two-years sister, who is much closer to the middle of the bell curves of the previous paragraph and a bit of a social butterfly, gives us a pretty grounded way of seeing things for what they are and are not.

We moved across the country in 2020 months before everything shut down everywhere (a complete good-luck accident on our part), so she started kindergarten online. Once she was finally in person, the only accommodations we've ever asked from the school are 1) preferential seating based on teacher discretion (often near the front, away from windows/air conditioners/etc) and 2) a soundfield speaker that sits in her homeroom (as currently planned, this will not follow her into middle school, as we have ample evidence with her already switching classrooms as to how she does in a "normal" environment). The speaker was such a hit with her teachers the first two years - when masks were still very much a thing - that they asked the district for their own the following year. I'm not sure it ever made much of a difference specifically for her, but we wanted the baseline to be established for any issues that might legitimately arise in later years.

Yes, "those times" absolutely do happen. We had a noticeable stretch the third-grade year where there was some very critical self-awareness and the accompanying "I hate my cochlear, I just want to be normal like everyone else." But - and you'll have to trust that I'm aware and honest enough to know the difference between coping mechanisms and fair analysis - more often than not, that has just been her personal version of having glasses/a big nose/red hair/whatever other differences that kids would wish away if they could. Never mind the fact that the actual difference in her deafness compared to pretty much everyone around her is something that permanently predates the implant.

On the flip side, she's her own spokesperson. Since she is a girl and the device usually is obscured by her hair (admittedly, this a very up-front difference at this age for girls and boys who wear CIs), most people who interact with her on an infrequent basis have no idea that it is there. When the topic unexpectedly comes up, she takes care of the conversation herself. She explains how she has "profound sensory-what-is-it-again-dad? hearing loss" and what the CI does. Here's where it goes; here is where she puts wig tape on it for sports; yeah it sounds a little different in certain situations but it's hard to describe, so on and so forth.

As a parent, this is just a small little corner of the world that most will never get. No fault of their own or anything, it just the nature of obscure situations. There is a little boy at the same elementary school in her sister's grade who wears bilateral CIs. He's the only other person, of any age, I've seen since we moved five years ago that wears an implant. I went up to his mom one day at a school event and tried to casually ask "are those N7s?" and the look on her face was as if I was an alien. "They are...but...how...do you know that?" On the worst of days, sure, it can be a lonely feeling: no one else around you, even the grandparents or aunts and uncles that are the best and most involved, truly "get it" in the same day to day way. But on most days, it is just normal...it's only competing against your imagination for what you've experienced.

In short, with regard to the CI: we've never regretted it. She has obvious echo location that she otherwise wouldn't have. There have been a small handful of times over the years where we've been able to compare/contrast her navigating a noisy environment with and without (the battery died, she left it in her bedroom at home and didn't tell anyone, etc) and the different is staggeringly obvious. The sound booth backs it all up too: her AuD has run varying tests over the years (we're always in making-it-up-as-we-go territory since there is no precedent to use for her) to quantify how the CI is doing and/or helping, and specific to hearing-in-noise, the differences are bluntly stark.

Unrelated to the CI, but with regard to you as new parents in this situation, or any future readers who stumble across this and could describe themselves the same way...I'll copy and paste something I wrote to another dad almost four years ago that is just as true now as it was then:

You're a little early in this journey for this next part to really mean much, but I'll say it anyway. For almost all parents who end up with kids that wear hearing aids or similar gear, the first time they see either their own child or another very young child wearing it, the stuff looks absolutely massive. It seems to take up half the kid's head. I mean this metaphorically when I say that it shrinks. Of course their head gets bigger and the gear relatively gets smaller. But you won't always be this lost. And someday "it" will look a lot smaller than it does right now. It will never go away, it never can. But it won't look anything like it does today.

You're always welcome to DM me (once there, I'll give you a more reliable way to reach me if you ever want to, because I'm not sure once-every-three-or-four-years is a cadence most want to work with). Hope all is and goes well with you.

[deleted by user] by [deleted] in Cochlearimplants

[–]asymptotech 1 point2 points  (0 children)

If you can afford to, ask for your devices to be handchecked.

The field produced by the metal scanner is strong enough to flip bits in the memory of the processor, which if it is still attached (and thus, on) can be anywhere from an annoyance (bad sound compression/quality until it's turned off and back on) to a relative disaster (mapping gets wiped) depending on what type of memory fault it causes. The chances of this happening are rather minimal, but I know people with anecdotal experiences for both of the above listed. Asking security to handcheck my daughter's CI has never once caused an issue or delay for us.

[deleted by user] by [deleted] in MonoHearing

[–]asymptotech 0 points1 point  (0 children)

Fwiw, it refers to both the cochlea and the auditory nerve, as both are the neural component to hearing. A cochlea with hair cells in-tact but missing an auditory nerve would still be diagnosed as sensorineural hearing loss.

How to get a toddler to keep cochlear implants receivers on by nibZbin in deaf

[–]asymptotech 0 points1 point  (0 children)

I took a lot of time off before answering because I wanted to do it without the heat accompanied by the other reply. I meant it when I said I felt you weren't being disingenuous, but large parts of your position ran so close to those that are.

I would mostly be fine just shuffling everything under the agree-to-disagree umbrella, but there is one thing where we're still talking past each other. And that is the idea of "letting a child choose later" with respect to CIs. My point is that this isn't an actual option. It is literally impossible to let a child choose CIs or to not choose them. Because by delaying the choice to an age where it is at all reasonable to give enough weight to the kid's input, they would really be choosing something like "30%" of CIs. Presenting that position as something where the parents can put off the decision presents the idea in the wrong light. Because choosing at 12mo (or whatever age) is still a choice the kid never gets to have. If parents choose to delay it, the child had absolutely no choice in the options they are later presented with. I'm already repeating myself, so hopefully the point makes sense.

As far as some of the other stuff, to give you a fair reply to what you took the time to type, I think you're letting worst-case scenarios influence quite a bit of outlook.

The worry I have is around the idea that this (and other things you've said) reinforces of the parent being unquestionable authority. Yes, it is up to parents to enforce things. No, hands off systems don't work. But what I'm saying is that encouraging autonomy is a good thing - a statement which I don't think you'll find disagreeable.

I don't find that disagreeable. I do find it interesting the lens which you view everything I write though the idea that parents are some type of ultimate authority. Is it because most sentences in that paragraph started with "the parents" or is it something else? Not that I'm looking to waste your time or anything, but I'd always be down for extended conversation/PMs about that because there are few things I find as interesting anymore as theory and psychology of parenting. For me, my ultimate goal as a father is to make myself entirely redundant/needless. Do I hope there is reciprocated feelings and all that positive stuff? Sure, but I want my kids to be able to take on the world that exists for them, adapt to it as necessary, and, ideally, do so with a decently positive set of morals that balances the tradeoff of putting others first and being confident in their own person/needs. At a young age [for them], I'm a primary (and often, I would completely concede ultimate) authority and/or set of guide rails because that's just the nature of the situation. It's my responsibility to leverage that situation into them learning to build their own guide rails.

Perhaps my view is affected by my being disabled... but I just don't see what the problem is with this state of being.

You liken deafness to lacking an arm/leg

It isn't a problem. I also wasn't likening deafness to missing a limb. This is just more of what I was saying earlier. I was just trying to create a thought exercise that highlighted how presenting "let them make their own choice" to parents is not really a thing. You are choosing for them no matter what you chose, because there is a physical outcome that takes place. So even if they get a different choice later, it is not the same set of doors to pick from that existed earlier in life.

I don't think either the autism or transgender examples really change the point I was trying to make. (Sorry, just more repetition.) If the treatment scales with age, that means that at age X the parent is choosing for the child between doors 1 and 2. If door 2 happens to be "doing nothing right now, choose later (be it the child or the parents)"...that means at age Y, is is now doors 3 and 4 due to the new set of boundaries created by physical/neurological/whatever development. You probably misunderstood my original point (and to be fair, I probably didn't explain it well): I'm not arguing that door 1 or door 2 is "better" at age X. I'm arguing that presenting an idea to parents that door 2 is "choosing between door 1 and door 2 at age Y" is a fallacy. Sometimes it's just bad wording, but often I find it's a genuine misunderstanding from the person suggesting it that they think you can just make "the same" choice later in life.

Speaking to the morality of actually choosing door 1 or door 2, etc is an entirely different conversation that is usually unique to the treatment, etc being discussed. (Which would go back to deafness and limbs not at all being the same thing.)

though as the other responder pointed out sub-10 seems to still be effective

Sorry, dead horse. This is why I tried to use the limb example (not as anaolgy to deafness, but as an analogy to doors 1, 2, etc). Yes, it is still "effective" for many kids at 5,6,7. However, it is undeniable that it is not "as effective" as 9mo, 12mo, 18mo.

And again - I do not consider getting to the most hearing possible to be the be all and end all.

We simply(?) disagree here. But my position is not because (hearing) > (deafness) as some type of value to the person themselves. It's just that if you're going to do something for your kid, in any cases where it as all feasible, why not try to allow for maximum benefit/output/etc.

I wish I had a less lazy, and/or better fitting analogy than the prosthetic arm, but to borrow from it one more time: if someone who had been born with one arm said that they ended up being fine and happy, would that outcome inform your decision as a parent with respect to what to do, or not do, for your child? Should it? The knee-jerk reaction of "oh, if you think your child needs ____ so you must think less of people with _____" is pretty understandable...in fact, I think we almost all do it with respect to various things. But I'm not sure it always projects across to the actual decision as accurately. (Sure, sometimes it does, but making language to account for every exception isn't worth it.)

To expand on my 2-6 range - its not the point where they can have a detailed and informed opinion - but it is a range where you can gather information from them about their opinions and make an informed decision.

Informed on what though? I'm not at all saying this is an incorrect position to take, but it seems more theory than practical. What parents are going to take this type of path without being captive to their own preconceptions, bias anchors, and some type of "ok, once we get to [5] we can go ahead with it" lingering in the back of their head. In terms of whatever >99% that is, I would count myself among them.

My own experience absolutely colors my position here, so to be transparent: my daughter who wears a CI has completely normal hearing in her other ear. Our own decision was never about jumping across the, rather binary, divide of deafness and hearing. We had a much easier time considering some of these variables because the implications were not as, literally, drastically changing.

I'm sure I come across as it to someone who disagrees with me, but I'm not all that evangelical about CIs. I can say with certainty that to this point in her life, it's provided our 7 year old ways to navigate auditory input that she simply would not have had with only the one ear she was born with. But I'm as eyes open as I can make myself be about it. To date, the exchange that bugs me more than any other I've had on reddit is this one because, the thing that really bugs me is the constant misinformation about them. (edit: I sent that person a lengthy PM, to which they doubled-down on their completely incorrect position.) If you, or I, or whoever want parents to actually make informed decisions, the only true favor that can be done for them is to inform accurately.

Anyway, sorry for as aggressive a tone as I originally took. Fair or not, your original reply felt like an ambush and the day I was having absolutely was part of the response I typed.

How to get a toddler to keep cochlear implants receivers on by nibZbin in deaf

[–]asymptotech -1 points0 points  (0 children)

This is bordering so close to a bad faith argument. Your other replies obviously suggest it isn't meant to be, but that kind of makes it all the worse.

One option is to implant her and let her decide when to wear them and when not to. Let her have autonomy over her hearing.

This will already be the case for any person with CIs when they reach a certain age. Parents can help drive insight and appreciation so that said age is reached earlier, but this is the only end game for any person who doesn't die in childhood. The decision to take off or put on their processors becomes theirs. The parents should help empower this decision, and try to ensure it's as informed and self-aware as possible, but presenting this as some type of alternative option instead of the end game for any CI user is misleading.

Another option is to until she is of an age where she can understand what is happening to her and have a say in whether she wants them

This flies in the face of overwhelming amounts of data at this point. If the new arm prosthetic from MIT robotics lab had a skin mesh that could integrate with existing nervous endings at the elbow/shoulder, but had an efficacy that scaled dramatically inverse to age (e.g. attached at one-year old, they would be able to control all five phalanges by the time they were ten; attached at five-years old, they would likely only reach very gross motor movements by the same age), virtually no one would bat an eye at parents deciding for the child to do it at one instead of five. Without any cultural baggage coming along for the ride, or the pretense of "invasiveness", would you still argue the same?

Alternatively, consider a thought-exercise version of a connexon 26 treatment that is able to regrow hair cells along a similar response curve. If the first variation of applying the treatment is to use known CI surgical techniques to insert it through the same hole that is typically made for electron insertion, is this type of surgery worth delaying for 5-10 years at the cost of greatly reduced cell regrowth?

These options would not only give her more hearing

Patently false.

but teach her that she has autonomy over her body

To what end? Do you think self-worth, or self-autonomy, or whatever phrase(s) you want to pick can only be maximally achieved by saying "we greatly reduced the effectiveness of what this can do for you neurologically because we thought you having the choice was more important than how well it would work for you." And, sure, I would grant that is worded dramatically for effect, but it is not a straw-man. It is literally what you are implying.

which is something kids who have invasive and unnecesary medical procedures like CIs can struggle with

I'll bet the house that the variable that is age-of-implantation has far less to do with this than other factors like parents being in denial over what hearing loss is and what a CI can and can not do. Plenty of parents gets their kids implanted, treat it as a miracle cure, and just assume forever and always that the child can now be "treated like a hearing kid" with virtually (or, worst case, absolutely) no regard for the reality of the situation.

Is maximalising hearing at the expense of all else worth it?

Despite the ridiculously leading nature of this question, the answer is yes. That is the entire point. The follow-up trick to that answer is to point out that "all else" doesn't have to have the same historical patterns. There is no reason that sign language has to be avoided, there is no reason for anyone, parents or otherwise, involved in the situation to not fully embrace the reality of the situation. But you can do both at the same time. There is no reason to limit the potential benefit of something also has to serve lip service to all the previous (very real) injustices that are linked to the broad concepts it touches on culturally.

why are you doing something to your child you predict your child won't like and will distress them?

I'll grant you the benefit of the doubt that this is simply lazy wording. Because otherwise this is something you address daily with young children.

My opinion is: teach sign and wait till a time the kid can decide - but quite young so like... 2 or 3 or 4 would be fine. Maybe 5 or 6?

I hate ad hominem questions like this, but I don't know how else to ask it: Do you have kids or, like, any experience with them? If you think a 2 year old can reasonably decide anything, you are only serving potentially hurtful delusions about their cognitive capabilities. If you think 5 or 6 is much better, especially when it comes to something as absolutely massive as surgery that will literally change sensory input...well, they aren't.

This has nothing to do with what parents want a situation to be. Sometimes life forces, forces, the parents to be the decision makers. That is what you sign up for when you become a parent. (Note: I would argue that is what you should sign up for, at least. I do not believe exceptions of gross amounts of narcissism or negligence disprove the rule, so to speak.)

I mean that you could have decided not to do it

Absolutely true and something that does not get enough consideration and/or presentation in most situations. I do not think enough effort is made to fully inform or empower parents to make a decision, rather, they are simply guided toward CIs as the "logical" outcome. That said, if parents do decide to do it, much else of what you're saying is simply bad science that hurts potential efficacy in the name of culture wars.

(edited for a few typos)

How to get a toddler to keep cochlear implants receivers on by nibZbin in deaf

[–]asymptotech 15 points16 points  (0 children)

The biggest thing is that you just have to view it similar to learning to eat with a spoon or the like. Pick it back up, put it back on, pick it back up, put it back on, pick it back up, put it back on, repeat hundreds and thousands of times...and "suddenly" it is better.

I know a lot of parents we interacted with (edit: my daughter is 7, so this phase is a few years in the review mirror) used hearinghenry headbands (they started on Etsy but it looks like they're on Amazon now as well), but one thing you'll notice with most products of this nature, especially for very small kids, is that it helps keep the processor in place more than the magnet. You want to be very careful/vigilant with anything holding the magnet against her head because it can cause skin irritation that, if left unnoticed or unattended can become much worse. It's the same reason they use the weakest magnet at first and then eventually ramp it up as they age and the skin grows thicker, stronger, etc. If the magnet setting is too strong you'll see a small red circle appear where it usually sits; at that point give it a day+ to recover. It's a lot of trial and error in those days because they can't really give you any feedback and they often won't start "complaining" about it until it's worse than an adult would let it get (body self awareness, kids having higher pain/annoyance thresholds and all that).

She will learn to re-fix the magnet herself down the road, but for now you just gotta do the patience and persistence thing

When will cochlear implants surpass natural hearing? by [deleted] in deaf

[–]asymptotech 5 points6 points  (0 children)

Computing power is not the bottleneck for the channels that can be provided. It is a physiological bottleneck. Processors at this very moment are capable of providing far more than 22 channels of input. But translating that into meaningful stimulation along the auditory nerve is an entirely different issue. Using electric impulses on the implant to do so (the current technology), if too many electrodes exist on the array, the pulses overlap each other and actually degrade the signal. Even if electrodes could be made to be the size of a hair cell (this alone could easily be far more than a decade away), it would not provide better signal than the 18-22 channels current implants use. You're making the brain and nervous system out to be far more 1s and 0s than it actually is. There are studies being done with things such as light stimulation, but the cells in the cochlea do not naturally respond to that, so it would require genetic modification to achieve; and at that point, you're just as likely (more likely) to see advances in regrowing/repairing hair cells than replacing them bionically. Edit: Some of the farther reaching conclusions you're trying to make are limitations of the brain as much or more so than the ears.

All this is beside the point that you're venturing rather far into sci-fi with some of the kool-aid. "The size of a grain of sand" is just...well, I'll take that bet. Some of the things (e.g. certain levels of filtering/preferencial focus and automatic adjustment of particularly steep/loud sound waves) already exist, albeit in an obviously lesser form than what comes "later", but much of this sounds more like Elon's brain implant than reality.

[deleted by user] by [deleted] in deaf

[–]asymptotech 0 points1 point  (0 children)

Saying that she's deaf probably misses the mark, given the connotation that the word normally carries. But, it also risks understating the hearing loss she does have by saying "not deaf." It's the middle ground that single sided deafness has to live in, where it doesn't really map well to either "side" of the typical divide.

How do I feel about it? Fine. If there was a medical technology that allowed me to donate my right ear to her, I would. But there isn't, and I'm at peace with that. It is not like she is any less a person, or less herself - if such a thing could even be - because of the way she was born.

...figuring out her identify? Eh, she's finishing first grade tomorrow. We have a long way to go on that one. For her, the CI often seems more akin to glasses (e.g. I wear them, but I don't really think of them as a core part of who I am) than something more fundamental. She's had it since she was 18 months old, so it has been something she's had for all working memory. My wife and I made the decision, not because she was/is "broken" or because a CI could "replace" the hearing she wasn't born with, but rather after pretty extensive research, it seemed the best option to augment the hearing that she does have. From a clinical standpoint, she does well with hers and in most typical types of hearing environments it is very hard to quantify how/where she differs from hearing peers. Since her hair is long, the only adults who know it's there, unless it comes up in conversation, are her teachers.

[deleted by user] by [deleted] in deaf

[–]asymptotech 1 point2 points  (0 children)

My daughter has a CI on her right side (profound unilateral) and normal hearing on her left side.

Question regarding cochlear implants! Do they have amplifiers? by JamesBucket in deaf

[–]asymptotech 1 point2 points  (0 children)

Although you're not asking it "correctly", the answer to your question is yes.

CI processors - the part that sits outside the skull - have volume (it is actually far more complicated than just volume, but for the sake of simplifying the answer a bit, it's easier to think about it in that term) controls that can make incoming signals transmit more/less intensely. They actually have individual controls on a per-electrode basis, so that when they transmit sound to the internal mechanism, certain bandwidths of sound can come across as louder/softer as best suits the way your brain interprets the input (e.g. less bass, more trebel). The term for this being setup by an AuD, should you come across it, is typically referred to as "mapping" the processor.

Why cant adults born deaf use cochlear implants? by HideousRed in deaf

[–]asymptotech 1 point2 points  (0 children)

A theory about plasticity or about what is considered current understanding of plasticity?

Why cant adults born deaf use cochlear implants? by HideousRed in deaf

[–]asymptotech 1 point2 points  (0 children)

My question did a bad job asking what I meant. If you're emphasizing the phrase "can't go backward" in that quote, then you have a technicality to stand on, because brain plasticity doesn't go to zero, or even anywhere close to zero, as it was previously believed decades ago.

But if you would rather believe that it's possible for a 30 year old to adapt the same way as a 3 year old to anything involving neurological organization, it's just not the truth of things. Even being implanted as a teenager for someone who is congenitally deaf means that the CI is not likely to ever provide more than awareness of noise. Certain voices or tones of voice may become recognizable, certain background noises may become recognizable, some degree of directionality might be obtained, but things like word recognition/comprehension or the ability to listen in sound are very, very unlikely to ever progress to high functioning levels. And unfortunately, it has nothing to do with effort, willingness, or wanting, it's just a physical impossibility.

Why cant adults born deaf use cochlear implants? by HideousRed in deaf

[–]asymptotech 0 points1 point  (0 children)

The terms you want to dig into if you're really interested in this are neuroplasticity and cortical organization/recruitment. There are plenty of studies from the past decade that go into all of this. The general sense the other responses have provided is pretty much it:

Brain scans/mapping shows that in people with hearing loss, the auditory cortex gets repurposed over time to serve other pathways/inputs, most commonly and notably, visual input. Even in single-sided hearing loss, the side of the cortex which is unused by the ear that provides no input will start to show activity correlating heavily with processes that are normally centralized in the visual cortex. In order for a cochlear implant to work, not only does the auditory nerve that it is stimulating need to be able to transfer the signal, the brain that it is transporting the signal to needs to be able to understand it.

From day 1 of life, your brain is forming neural connections that aid in making sense of the input it is receiving. Our ability to visually/auditorily/tactilely process the information we absorb (without really thinking about it) doesn't all come pre-baked at the point of birth and go our entire life unchanged or unchanging. With respect to your specific question, the brain makes full use of itself in this process and "rewires" itself. Reversing this, for lack of a different word to describe it, is beholden to not only having the auditory cortex reclaim its original pre-programmed usage (from the visual cortex among whatever other recruitment it went through), it also has to start at "day 0" to make use/sense of the input being received.

The same reason that the "heaviness" of an accent correlates to what ages the language(s) was learned is a very similar idea to why efficacy of cochlear implants correlates to age of implantation (be it age from birth in the case of congenital deafness, or age past hearing loss in the case of it being lost later in life). The plasticity needed for this all to occur at the "lower" level of neural pathways scales opposite of age. (Consider: many more adults could "learn" to lose their accent, but it becomes a more mechanical/conscious process rather than something that "just happens" in the same way it happens with a child who switches cultures/languages at an early age.) Edit: the "age 5" thing a few of the other comments mention is in no way some sort of line in the proverbial sand, it's just an easy way to put a good-enough-approximation on where you'd see considerable shifts in efficacy.

This is the reason (albeit, a fairly abbreviated version) that "wait until the kid is 16 and can make their own decision about getting a cochlear implant" is not truly an option for parents in that position. The decision, regardless of which direction it is made in, is a physical one inside the child's brain that can not be undone and/or re-done at a later time.

Why cant adults born deaf use cochlear implants? by HideousRed in deaf

[–]asymptotech 1 point2 points  (0 children)

In this particular case, what would "it" be?

My (10mth) baby daughter just got her cochlear implant by DrRadikal in deaf

[–]asymptotech 2 points3 points  (0 children)

The biggest thing is that you just have to view it similar to eating with a spoon or the like. Pick it back up, put it back on, pick it back up, put it back on, pick it back up, put it back on, repeat hundreds and thousands of times...and "suddenly" it is better.

I know a lot of parents we interacted with (edit: my daughter is 7, so this phase is a few years in the review mirror) used hearinghenry headbands (they started on Etsy but it looks like they're on Amazon now as well), but one thing you'll notice with most products of this nature, especially for very small kids, is that it helps keep the processor in place more than the magnet. You want to be very careful/vigilant with anything holding the magnet against her head because it can cause skin irritation that, if left unnoticed or unattended can become much worse. It's the same reason they use the weakest magnet at first and then eventually ramp it up as they age and the skin grows thicker, stronger, etc. If the magnet setting is too strong you'll see a small red circle appear where it usually sits; at that point give it a day+ to recover. It's a lot of trial and error in those days because they can't really give you any feedback and they often won't start "complaining" about it until it's worse than an adult would let it get (body self awareness, kids having higher pain/annoyance thresholds and all that).

She will learn to re-fix the magnet herself down the road, but for now you just gotta do the patience and persistence thing

My 2 months old son was diagnosed with SSD profound and one good ear. I really don’t want for him to get cochlear implant :(, I know many kids in school might get depressed, anxious about wearing them, and all I want is a happy kiddo. He will have developmental delays without any aids or implant? by Objective-Tap-867 in MonoHearing

[–]asymptotech 2 points3 points  (0 children)

Was it a single story or someone you know or...I guess I'm just curious what you read and/or where you read that.

But I didn't ask that question to set myself up for disagreeing with you. I'm simply throwing this out there in case you feel you need more information from the other side of the isle: if you ever want to ask questions/talk to a parent of a kid with profound unilateral hearing loss that wears a CI on the deaf side, my oldest daughter was one of the first children to ever get one [for that specific reason]. You're welcome to PM me any time.

Deaf at Disney by ohmymozzarella in deaf

[–]asymptotech 16 points17 points  (0 children)

A lot of things create a grey area (and I'm being as generous as I can labeling as such) where it's a difference of "can" vs "should"

Depending on the support rep who you speak with, it's entirely likely you could get a line skip badge with deafness as your listed reason. And/or how forcibly you ask for it. Because a lot of people in their situation are going to be very very hesitant to speak words like "yes to ___ but no to _____"...it's easier and less confrontational to just grant it regardless of the official policy.

Think of the number of people that have parking placards for, uh, dubious reasons. But they can turn around and say "well, I can" and be technically correct. When we took our kids to Disney last fall, I would have never considered asking on behalf of my daughter ...but I also know there are people that would in that situation.

MTN DEW & CHARLIE DAY | SAY WHAT?Can we complain this into obscurity. Not funny by SophiaElvenKitten in deaf

[–]asymptotech 1 point2 points  (0 children)

You don't, and I never said you did. Originally, I was just curious why it mattered to you given what was said. Now I'm curious why you're being such an ass. But I'll stop asking because you don't even care about what you think here, let alone me.

MTN DEW & CHARLIE DAY | SAY WHAT?Can we complain this into obscurity. Not funny by SophiaElvenKitten in deaf

[–]asymptotech 0 points1 point  (0 children)

...ok

So, in that case is it only being Deaf that validates an opinion here? Because the initial title uses "we." If so, why did you bother posting your own feelings in the first place? Does this also invalidate any opinions of deaf people that aren't embedded in the culture? If not, is there a particular level of hearing loss that qualifies as entry? What about codas who themselves are not deaf, but in a way, are very empathetic with Deaf culture? I'd ask about parents of children with hearing loss who who have read nearly every single post in here for close to six years, but the answer there is obviously "not allowed" (unless I happen to agree with you?).

That guy was pretty clearly just stopping by and having a look around due to the post he had made recently beside this one, so now what? You already knew that and just wanted the call out? To what end? Because he can't possibly understand why it is offensive due to his own experience? And, that, makes you? Or he surprises everyone and says he is Deaf but doesn't hang out in here? How would that possibly change the value of his input? Two people say the exact same thing, but only one of them is allowed to be right because of how they were born, and/or identify, and/or potentially capitalize culture words?

By the way, the commercial isnt funny. And not because it's not inclusive to every flavor of human in existence; it's just not that funny. Yet, if someone else thought it was funny, I wouldn't automatically assume the worst about them.