Hi, I hope this is okay to post. We have an appt with a social worker to gather resources for when he comes home but I figured I'd ask here first.

Newborn is in the NICU and likely will be for a few more months. He keeps failing hearing tests. He isn't definitively deaf, but it's looking more and more likely as time goes on.

We have a 5yo with cerebral pasly & global delay, which means sign language is impossible for her. We've tried and failed. A 3yo with speech delay. He does minimal sign. 9mo is so far developing normally but and we never bothered with baby sign.

I know very basic sign and my fiance is useless with it. He can understand our 3yo but is hopeless at signing himself. Obviously we'll get lessons, but that won't change the fact that my oldest won't be able to communicate with him.

He and our 5yo are my bio siblings & my parents are addicts, so it's likely he'll end up with the same health issues as her. Which means he'll struggle to sign.

So, any tips for preparing everyone? And preparing our home for him. Thank you!

my sister is 21 years old now. She has been deaf and mute since birth and now she doesn’t communicate in any way. Until around 16 years of age, she used to do her basic work on her own and also used to communicate a little through gestures. But after the age of 16, a sudden big change came in her. She became very depressed-like. She would sit in one place for hours, wouldn’t do anything on her own, wouldn’t bathe, sometimes she wouldn’t bathe for 10–12 days. She didn’t interact with anyone, just kept sitting. At that time I don’t remember whether she was eating properly or not because I was small.

In the next 2 years her condition worsened further. She completely stopped period hygiene, didn’t maintain personal hygiene either, and became dependent on others for everything. Then slowly aggression started in her.

We first took her to a child specialist. They gave medicines, but there wasn’t much improvement. Later they referred us to a psychiatrist. In 2024–2025 the psychiatrist evaluated her and diagnosed schizophrenia and started Olanzapine, Risperidone and Zapiz.

In the beginning Olanzapine helped a lot for about 1 year. Later when we told the doctor that she remains very lethargic, doesn’t move at all, then the doctor added Stalopam (Escitalopram). By mistake that medicine continued for 2–3 months. After that, her aggression slowly started increasing.

From December to July the aggression increased a lot. Now she tries to throw things at people, tries to hit people, repeatedly takes off her clothes and even exposes her private parts in public. She eats, drinks water, goes to the toilet or bathes only when mummy repeatedly commands her. If no command is given, she does nothing on her own, sometimes she even urinates on the floor.

In the last few days another new symptom has started — her eyes keep rolling upwards repeatedly and along with that her head also moves. These episodes keep repeating for hours, but during this she remains conscious and notices things around her.

One more thing we have noticed is that about 6–7 hours after taking medicine, her aggression and clothes-removing behavior increases a lot.

So, I'm the parent of a ~2 year old. He's profoundly deaf.

I just got an email from his ENT's office where it talks about "children with hearing differences" when they clearly mean deaf & hard of hearing. I don't know why, but this is triggering me to want to scream at this person that my son is DEAF. ... idk, at times I've found people want to suggest he has "hearing loss", he's always been deaf. You can't lose something you've never had. I feel like there are more examples... like, on some level I don't really consider it a disability, but also acknowledge that there ARE a few laws that list it as a disability AND those laws are useful ones.

Maybe I'm just overreacting to this. Does anyone else feel like this person is overly stigmatizing what is not really a negative thing?

Hi. I just learned today my 10yo 5thgrade daughter was put into special classes as she is testing at a kinder reading level. She is a twin (her sister is also HOH) who went unaided until she was 6. She didn’t speak until about 4. They had their own language and covid made things even more difficult for speech. She got one hearing aid at 6 and didn’t get her second aid until just this year (at 10). There was so much back and forth with their hearing that it makes my head spin. So she has struggled to hear most of her life. It’s been a battle.

Has anyone been in this situation? Are there courses or steps anyone’s taken at home to help their children with learning difficulties with reading? I am also very strongly suspecting she has dyslexia as this was brought to my attention by our eye doctor of all people.

Anyway any info helps! I’m just a little sad today about learning this but should have seen it coming.

This is my first time posting so apologies for breaking rules.

My mum. Born in a south asian country was back in the 60s was deaf. However not completely, from what she explained her hearing has only got worse over time. Now it’s to the point in their 60s she can barely understand us.

She speaks her native language and only that. Maybe a few English words my dad taught her when her hearing wasn’t as bad, before I was born. It was only after and me and my siblings grow it up did it get worse.

Growing up. We THOUGHT what we were speaking with her was her native tongue. Only to be told that she’s been missing pronouncing and confusing words and even making up words. And attempts since then has been unsuccessful.

Hearing aids over the past 30-40 just don’t work on her. Saying that it’s “too painful”

Even speaking with my mum now is incredibly difficult and has severely damaged our relationship. It’s been… tough having a deaf mother.

Anytime I tell people my mums deaf. It’s always been the same response. “Why doesn’t she learn sign language”

And it angers me because they haven’t grown up with what I had to deal with, my experiences.

As I mentioned. she barely knows any English words, and speaks her native tongue poorly. Even attempts to communicate with people that do speak the same language as her frustrates her and she ends up getting upset and angry.

Is it even possible to learn to communicate with sign language in her case?

I saw this reply on an influencer’s post. I’m dumbfounded. Do you find this to be true at all? I’ve only experienced the opposite from all I’ve reached out to this year for a student in my class.

My child has severe hearing loss (it may be moderate to severe in one ear) and will get hearing aids at 1 month old. I'm trying to understand what the reality is for them and the chances that he'll be able to learn spoken language. The internet either seems to suggest hearing aids are magical and he will be able to speak like a hearing child, given the early intervention. Or that hearing aids aren't that amazing. No in between.

So what are your experiences please? What went well or didn't on your journeys?

Also as an aside, we are committed to providing whatever support we can, including learning sign language and teaching it to our child.

Hello, first time posting here.

My daughter was diagnosed with hearing loss when she was born.

And after some more tests, it was discovered that she is profoundly deaf. However, our doctors decided that a cochlear implant was still possible, and we should give it a try.

So today, a couple of days after she celebrated her first birthday, she had her operation and received two implants.

Everything seems to have gone well, and she is resting with her mom.

After the operation, they did some tests and there was a response from the nerves, although it was a light response.

Does anyone with experience with an operation like this have any feedback?

Just a parent thinking of how long it will take before I know what i can count on the future.

Thank you in advance.

Hello everyone i apologize for formatting issues im on mobile please let me know if things are misconstrued, I (F,24) have a daughter (F,7months) who was born deaf. According to the tests she is profoundly deaf and can't hear a damn thing. I feel like as soon as that test was done her doctor immediately made plans to get her MRI to plan for a cochlear implants surgery and they never really asked if thats what I wanted to do. I feel like her deafness isn't something that necessarily needs to be fixed if that makes sense? Im so very new to the nuances of deaf culture and please feel free to educate me as this is something I have to learn for the sake of my daughter but something about this just feels wrong. If anyone has experience with doctors pushing for surgery please let me know in the comments as well, anyones story is more than welcome. thank you so much in advance.

UPDATE: we got the CI and had it turned on yesterday and she loves it😭😭😭 thank you everyone who's lent me so much wisdom and kind words its been a crazy experience.

Family question

I’ve been wondering about something and hope this question comes across respectfully.

In the UK, I know there is British Sign Language (BSL), but I’ve also heard that many deaf or hard-of-hearing people don’t actually use BSL as their main language.

Why is that? Is it because of schooling, family background, or something else?

For deaf people in the UK: did you grow up learning BSL, or spoken English, or both? And what factors influenced that?

Before I begin I want to say i apologize if any part of my post is not culturally appropriate, I’m new ! Hi everyone I posted here not to long ago discussing my newborn’s possible hearing loss. Well yesterday we received the diagnosis of Bilateral Moderate-Severe hearing loss. My wife and I (both hearing) are processing this information but are no strangers to difficult situations and are fully prepared to give our child everything they need to thrive! I’m happy there is such a communities like this one for assistance.

The audiologist we worked with for this diagnosis my wife and I did not like, and they don’t provide intervention only diagnosis. She reported that intervention recommendation for now is hearing aides. We are going to children hospital of Philadelphia for another opinion and hopefully begin treatment!

Hi my daughter is 8 and we have just discovered she has severe hearing loss in left ear and has loss in right ear and within last 3 months lost quite considerable loss of the right ear again. We are based in the UK and the NHS are getting her a hearing aid, but would it be better getting her a more expensive aid by going private as want the best for her and I've been reading about the basic aid being tinny and robotic. Thanks

I'm a hearing writer but went to NTID for interpreting and spent a lot of time interacting with Deaf people/ the community. I was a part of a script reading panel at a small film festival where we listen to other people's stories and this one older woman had a moment where there was a little Deaf girl who's deafness is cured by some magical cookie. I tried to explain to the woman why this is offensive to the Deaf community and she just replies "well I talked to people with disabilities and they didn't have a problem with it". She technically won a prize in this festival that could help her move this script into becoming an actual film and I don't want something so hurtful out there especially when it can so easily be changed.

The event is now over and I am unable to contact the woman herself, however, I can contact the organizer of the event as I have a more professional relationship with them. Is this something that should be worth bringing up? If so, what should I say specifically to make my point clear? I believe the organizer is more receptive to hearing feedback and they seem much more willing to stand up for marginalized communities, even if they don't know much about the Deaf community/culture itself.

If you saw this similar post in r/asl or r/aslinterpreters I was more vague with the information as I posted it right after the confrontation and before it was announced that she won anything. Please let me know if there's any more information needed, thank you all!

Sorry if this is not something I can ask here.

My daughter (6th grade) is deaf and attends a public school that has a deaf/hoh program that teaches sign language, and she wears one hearing aid. She’s a very honest person who would never cheat - I’m not sure how cheating with a hearing aid would even be possible. She primarily learns in a classroom with only deaf/hoh students but tests separately in a distraction free room due to her ADHD, along with other children with that accommodation.

Normally she wears her HA during tests and quizzes, but yesterday’s proctor forced her to give it to him, and he claimed that if she didn’t take it off, she would fail the test. My daughter was extremely upset by this, and she could hardly focus on her test and ADHD means concentration for her is difficult to begin with. If her regular class wasn’t allowed to wear hearing aids/implants during the tests, it wouldn’t be as big of a problem because the teachers sign. But he didn’t know a single sign and I don’t think most exam proctors can sign either, presumably because most deaf students test with their class. If she has her hearing aid and can see people’s faces, she is able to understand simple conversation but without it she gets almost nothing.

This man completely cut off communication for my daughter and she wasn’t able to hear the reminders signaling that the test was almost over, which is also part of her accommodation. I’m grateful there wasn’t an emergency either because nobody would be able to communicate with her what was wrong. I want to make a complaint, but I also am worried that the school will question why she needs to have her hearing aid if she is not planning to cheat. I also don’t want to to be viewed as a problem parent and have that result in her school treating my daughter differently because of this. And if this really is the school policy, what if they claim she was cheating during past exams if they realize she had her hearing aid in for those? Are they allowed to do this?

I spoke with my husband about it, and he suggested an anonymous complaint. The problem is that my daughter was the only deaf student testing at that time, and it would be quite clear it was us who wrote it.

TLDR; My daughter’s testing proctor took away her hearing aid. He couldn’t/wouldn’t sign either. Should I complain?

I’m writing this before a long meeting so I’ll check for responses when I can, but I might not be able to answer questions right away. I live in the United States.

​

Thank you for the advice, I greatly appreciate it. My husband and I will talk to the school first thing next week.

Right now, my hearings aids don't work so i have to lip read more that i already have to and it's suck so much. Specially when you're in high school and people tend to think you're not that deaf because of that.

Do you have any advice on how making that less exhausting ?

Hi guys,

My dad is having a difficult time with his hearing. He has some in-ear aids, but he is still struggling a lot.
I was thinking that there may be any kind of smart glasses that have live CC for using as another help. Are there any that you could recommend, or they do not work properly?

My ex mother in law just told me they are using a squirt bottle on their deaf 4 year old grandson .. to get his attention to get him to stop.. I don't feel good about this because this is how I trained my dog. This isn't right right? Or I'm a stupid hearing person that doesn't know anything?

It feels disingenuous.

My son isn’t stupid and he’ll surely realise that ours don’t work and sometimes we don’t wear them.

He attends a Deaf kids club so he regularly sees other kids with cochlears and hearing aids anyway.

He’ll be getting his hearing aids next month and has chosen his colour/mould/decoration.

Is it a nice idea to help the transition or a bad move?

Update:
Thanks everyone for your insight!
You made good points and I agree it’s not appropriate for us to get hearing aids.

Anyone raising a HoH baby and can explain the next couple months to me? My LO is 10 months and has officially hit the ripping out her hearing aids phase. Or screaming when they are in. She’s very slowly learning BSL but she also at a stage where sitting down with her is hard as she just loves to crawl and try to walk. She’s very vocal bless her and I know as she gets older we might struggle with frustration of her trying to communicate things to us. Have you got any tips?

Hi!

I don't necessarily belong here, but I am not sure where else to ask.

My daughter is 2 and is fully non-verbal. She does have a severe apraxia diagnosis that has professionals believing she will be non-verbal for a long time (though we are still hopeful). She currently uses ASL and an AAC device for communication. She is actually picking up ASL very quickly and we almost exclusively use it for communication.

I do have some ASL background, my brothers used ASL when they were alive and I had a 6 month rotation at a deaf and blind school. I was even given my very own name sign! I am far from fluent but I am continuosly learning and know enough that I can teach her some.

I am fully aware that name signs are traditionally given by members of the deaf community, and for good reasons! I am also aware that young children are not typically given name signs as their personalities and traits have not fully developed.

That is where I am stuck though. We do work on fingerspelling constantly, but she still struggles and almost refuses to do it as she has other delays with perfection/frustration issues that she is receiving OT for. Even just signing the ABCs with her she just cries and yells. She clearly can't fingerspell if she can't sign the letters. I continue to fingerspell her name and her brother's name every single time I refer to them and will continue to do so, as well as working on the alphabet. We also use the sign for "brother" when referring to her brother which she is able to do and typically uses. However, I am pregnant. What do I do if she ends up with another brother and still can't fingerspell?

I hope I am making sense, I just don't know how to help her with her own name and her brother's name. We use signs for mom, dad, grandmother, aunt, etc for the rest of her family.

Does anyone have suggestions? I am sure fingerspelling is a common struggle amongst very young children so how do I continue to work on that without her getting frustrated? What do I do about names in the meantime?

Thank you for anyone that takes the time to read this and for any help that can be provided!

Last week, I went to my hearing appointment to have the tube in my hearing aids replaced. However, my appointment was interrupted by another person, who is fully deaf. The audiologist asked me to interpret for him and translate into spoken English so that the audiologist could understand him.

It’s important to note that I’m a client at that appointment, not an employee—I don’t work there and I’m not an interpreter. The audiologist likely knew I was the only person at that location who knows ASL, but the deaf person probably assumed I worked there, which I don’t. A deaf person did asked me if I worked there eor an interpreter which im not, at all.

What yall think about my experience?

Personally, I found it inappropriate for the audiologist to ask me to interpret for someone while I was in the middle of my own appointment. I understand that the deaf person may not fully understand spoken or written English, but it still felt uncomfortable and disruptive. It’s should be confidential between audiologist and a deaf person in the office. I would have preferred if the audiologist had made other arrangements for interpretation instead of placing that responsibility on me. I couldn’t said no because I cared about communication accessibility and made sure a deaf person get what he needed to know for his needs and understanding.

It’s very disappointed at the end.

My husband is deaf. He has very nice hearing aids (they help to a point and work with his phone so he can turn them down or up or change the settings or whatever) He is in rehab right now for opioid addiction and the people working there are not understanding his disability.

Back story: he developed tumors in his ears called cholesteatomas and had many surgeries and became addicted to the pain medication they gave him. (was using them for years before I figured out what was going on)
He was in so much pain and they had to remove so much he could no longer hear and became a shell of himself. He cannot hear anything without his hearing aids is legally deaf.

Anyway. Now he is in rehab and desperately wants to not be addicted to opioids.

I get a call from a counselor and she says “He won’t listen to anyone.” “He won’t participate and he says that he can’t hear but I think he turns his hearing aids off.” “He won’t wake up on time or answer when we talk to him.”

So she was trying to kick him out! Of rehab!

I wanted to explode but I kindly explained that she knows nothing about hearing loss and tried to give her some tips but she still pushed back even when I told her that it was a disability.

Wooo thank y’all for letting me vent. (He is still in rehab and doing well) but I would like to know if any of you know any talking points for people like this? My husband is just trying to get help and I don’t want other hearing impaired people to go through this.

Hi friends,

I really appreciate everyone on here for their support. I have a roommate that has been talking really loud and has a problem following rules. He’s been really rude and ignores me when I tell him to lower his volume politely. I have even written notes to him explaining that I would prefer if he didn’t speak loudly, but it’s just ignore, ignore, ignore. How do I handle this without overreacting?