Dealing with parents...

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JennyB

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Hi all,

This is my first post here so I will start off with a breif over view of me!

My name is Jenny, I am 18 yr/o and I am severe-profoundly deaf. I am in grade 12, but also participating in a pilot program with Ryerson University so I am also taking a sociology course there. I work as a respite worker with children with special needs (more specifically autism, dev. delays, and deaf/HOH kids).

I used HA when I was yonger from the age of 2 to 11. When it came time to start middle school in a new town, with all new student, I outwardly refused to wear my HA. I would take them off while waiting for the bus, or when I got to school. My parents and teachers tried to convince me to wear them and eventually gave up. At that time my hearing loss was only mild-moderate in right ear and moderate to severe in my left. I was able to use what sounds I hear and my lip reading skills to be very successful without the HA or FM system.

Now I have started to have problems in classes and lectures. I was missing a lot of what the prof/teachers were saying. I am also having a really hard time in social situations such as going out for dinner or walking through the mall with my friends. I just moved to a new city on my own to go to an alternative highschool and therefore I am living on my own for the first time and dealing with all new people who aren't used to accomodating my hearing loss.

After a few months of thinking long and hard about it I made an appointment with an audiologist to see where my hearing was at and what options I have. The test showed that I am now in the severe-profound range in both ears. To be honest it was a bit of a shock. We talked for a little while and I made the decision to use HA again. So I am awaiting my new Phonak Savia Arts, and FM system right now.

Here is where things get difficult...I called my parents to fill them in on what was happening. There was a bit of a freakout and my mom was crying and threatening to sue my previouse audiologist and ENT for 'letting' me stop using my HA before. I managed to talk her out of sueing anyone but she was still freaking out. My dad called me that night and told me he wanted me to see a surgeon and look into surgical options. At first I thought he meant investigating the possibility of a BAHA or CI and humored him and listened...but no he wants me to look into a surgical option that will physically fix my hearing so I no longer require assitive hearing devices at all. For starters I have a combo of conductive and sensorineural hearing loss and my conductive loss is fairly minimal and there is very little point in corrective surgery for it. From my understanding there aren't any proven surgical corrections for sensorineural hearing loss and even if there are I don't think I want to do it. My parents don't get that. They want me to "fix" myself, but I don't feel as though I am broken. To me...I am me. Being deaf is part of that. I don't think I want to be a hearing individual. Is that wrong of me? My parents feel as though I am being selfish for that choice. Ultamitly the decision is up to me...but do my parents have any argument here? Is this them in denile? Is this them being ashamed of me? Any advice or observations would be really appreciated...

Thanks!
 
JennyB, :welcome: to Alldeaf forum! Well you are not the only one and us deafies have gone through the same thing. Now we know what make hearing people feel panic and crying about us being deaf. They want to fix us to be hearing. So that make them denial and not accept us being deaf. They want us to be hearing. They thought the doctors and the audiologist will "fix" us with hearing aid or Cochlear Implant(CI). Maybe a little bit ashamed, but not ashame of you as a person. Just your hearing loss. I think it is really up to you to make a choice if you want to have CI or not have a CI. If you don't want to have CI, then don't get CI and let your parents know that you are a big girl and a young woman. You have a right to say "NO". We are having a lot of debate about CI on the forum or threads. We don't want to have CI on babies and young children. We would prefer to have them become teenagers and adults so that they can make a decision if they want to have CI or not. Hearing parents just never get it and they are in denial. They need to face reality that they have to accept us being deaf and hopefully they will learn ASL to communicate with us halfway with just basic signs. It never that easy when we have to deal with hearing parents and hearing professionals ("Experts"). You are not alone. Good Luck. :wave:
 
Thanks for the words of support! My dad doesn't want me to get a CI (although I am sure he would love it!) He is looking into trial surgeries and such that would fix my hearing problems for good and make it so I would no longer be deaf. Every trial he can find he wants me to look into! I don't want to be flown all over the world so I can be fixed if nothing is broken....I like being deaf....I like being me...I don't mind not hearing. I can't really remember when I was hearing. I am kind of afraid of being hearing even!
 
U are not the only one who has parents who cant accept their child's deafness. My mom didnt accept mine for a long time so I raised as a "hearing" person without exposure to sign language nor the Deaf community. When I started taking ASL classes at ASU and told my mom I wanted to go to Gallaudet University, she kept asking me why that school. Why do I need sign language if I was able to communicate just fine with hearing peers. She didnt get it..I needed to be around people like me or be in an environment where communication is fully accessible for me. Finally, she understood and has accepted my deafness. The irony is that she has a deaf son who grew up with ASL and in the Deaf community.

Wow, your dad must want so badly to "fix" you. He will just have to either accept u who u are or continue to torture himself about it and waste a lot of time on it.

Anyways, welcome to AD!
 
Welcome to AllDeaf! :)

Sounds like your parents are in denial.

When people have a kid that's deaf and they don't immediately accept it, they will usually try to find other things to blame for their child's deafness.

In your case, you've been deaf for years... why now?

I'm glad that you've accepted that you're deaf. That's something to be proud of. If your parents start freaking out, then they need to learn to accept you for who you are.

Sure, cochlear implants could be an option... but is it something you really want? Would you rather wear hearing aids or use sign language interpreters?
 
JennyB, welcome to Forums!

im raise deaf since i was baby at ages 10 month old and im learn sign languages at ages 5 years old myself.

i never using CI when im grew-up and im usually hearing aids when i was little girls till years till quit using that hearing aids dues my mom cant afford for hearing aids but im barely hard without hearing aids and again with sign that aint easy for me!

i tried told my mom about i wanted hearing aids again but my mom cant afford for more REASONS!
 
VamPyroX said:
Welcome to AllDeaf! :)

Sounds like your parents are in denial.

When people have a kid that's deaf and they don't immediately accept it, they will usually try to find other things to blame for their child's deafness.

In your case, you've been deaf for years... why now?

I'm glad that you've accepted that you're deaf. That's something to be proud of. If your parents start freaking out, then they need to learn to accept you for who you are.

Sure, cochlear implants could be an option... but is it something you really want? Would you rather wear hearing aids or use sign language interpreters?
Click to expand...

I think they are going to a second denial period. I was very young when I was diagnosed so I am sure they did it then too. They are going through it again now because I can no longer "cope as a hearing individual" It's true that I didn't always embrace my deafness, and my parents got used to not embracing it as well.

I do not want a CI. I am trying HA's again, it just seems less permanent. If I decide in the future that I don't want to use them then that will be an easier choice to make. I don't want to go through a surgical procedure with full knowledge that I may not want it in the future. Some of my classes in highschool were interpreted, but not all. It did help and I may request it at next year when I am in full time university.

Are there any opinions on approaching Ability services at Universities? Is it something that I should do right away even if I don't want their services initially?

Jenny
 
JennyB,

Your deafness is yours. You deal with it in the way that makes you most comfortable. Only you know the answers to that, and you should not conform to anyone else's expectations to make it easier for them. That is from both a parent of a deaf child and a counselor.

Secondly, you are doing fine. Judging from your posts, you are a very mature young lady; bright and articulate. You have given your situation a great deal of thought, and you have taken steps to do for yourself what you feel would be best for you. I want to commend you on your independence and efforts. Good for you!

Thirdly, your parents would benefit from professional counseling. (Perhaps, as counseling will only help those that are willing to receive help.) But their problem is not your problem and do not allow it to become so. I understand that you love them and want to make them happy, as well as have their approval, but you are not responsible for their difficuty in acceptance of your deafness, not thier denial. That is theirs to deal with. Love them as your parents, but do not allow their inability to accept either your deafness nor your decision to negatively impact your life. You are obviously well on your way to becoming a successful, well adjusted young adult. Keep moving forward.

If you have decided on the university that you will be attending, I would recommend meeting with disability services well before you start your first quarter or semester. Ask for everything that you think might be of assistance, including an interpreter. If you later decide that you don't need a service, it can be removed merely by signing a paper. It is much more difficult to get services added than removed.
 
Hi, Jenny:

I haven't read all the replies and must logoff soon. but a quick thought:

I agree with Jillio about meeting with disability services. Bring your audiogram and other data from the audiology appointment (like comprehension scores) and maybe with a letter explaining from your audiologist (probably you don't need the letter, but it can't hurt). This will help you get service you need. When I started college I didn't want help, so I didn't understand in classes and had a very bad time. Please get all services you need so you can have a good education. :)

Parents are hard I know. Maybe your parents need some time. You said "after a few months of thinking long and hard" - how many months have your parents know about your hearing change? I hope after time they will calm about it and let you make decisions for your hearing.

But maybe your parents won't accept your deafness. At least for a long time. Now I know one of my brothers won't accept I am deaf. He refuses to sign most time. He even turns his back etc to make it hard to lipread. Ever since I was born my parents accept my deafness and not also. They learned ASL (but my mom wanted to learn ASL anyway). They use ASL at home. But when I was a kid we fought about me wearing HAs. And when I struggle in school, sometimes I think they just want to fix my hearing to make school easier. Now they accept I don't want CI soon - too long to explain but I don't - and I am so happy they accept. But I can feel they are waiting for me to change and get CI. So one way they accept I am deaf but another they always will want me hearing.

Maybe this is no help, but I want to say I understand. I hope soon things are better with your parents. :grouphug:
 
Jenny,

I think I can understand how you feel because my own hearing loss has also progressed from moderate into profound-to-total level and the last drop was detected quite recently. Congratulations on making the decision to use hearing aids again to make the most from the hearing you have. Be prepared to work a bit to get accustomed to them when they arrive, and this effort will be more than rewarding.

Your parents needn't sue your doctors, since wearing HAs cannot stop or postpone the onset of further hearing loss (as in my case). But you still have quite a lot of hearing left and chances are good that you will cope well with your new HAs and FM system. I would also suggest having a note-taker to assist you at school and university, if possible; try and find out if such an option is available for HOH students where you are.

Concerning the possibility of CI, I find it absolutely normal that you do not want to consider this option at the moment - at least, when my hearing was as good as yours I wouldn't even let this thought linger. However, it may be heart-warming to think that there is always a way out in case things get really tough - but I hope they never will :fingersx: Good luck!
 
JennyB said:
I think they are going to a second denial period. I was very young when I was diagnosed so I am sure they did it then too. They are going through it again now because I can no longer "cope as a hearing individual" It's true that I didn't always embrace my deafness, and my parents got used to not embracing it as well.

I do not want a CI. I am trying HA's again, it just seems less permanent. If I decide in the future that I don't want to use them then that will be an easier choice to make. I don't want to go through a surgical procedure with full knowledge that I may not want it in the future. Some of my classes in highschool were interpreted, but not all. It did help and I may request it at next year when I am in full time university.

Are there any opinions on approaching Ability services at Universities? Is it something that I should do right away even if I don't want their services initially?

Jenny
Click to expand...
Yeah, multiple denials happen.

When kids are deaf, their parents can be in denial. As the kids become adults and move away from home, the parents eventually forget about it. Then those kids return with a deaf girlfriend or more deaf than before, then those parents can end up in denial again. Sucks. :(
 
I think your situation is very similar to mine. Although I am much older than you， I went through the same phase you did when I was younger.
I assume that you don't use sign language because if you do you obviously can request interpreters at your college to help you with your classes. Learning sign language might be one solution but then again, not everybody picks up sign language quickly.

It is the best if you and your family start to consider CI. From your posting, I don't think you are against that option. Talk to a few CI surgeons and find out if you are a candidate.

I have sensorineural hearing loss. Pre-CI my audiogram shows a near flat line from 95 to 110 decibels. Now, 3 months after CI it is at 20 to 15 decibels.

If I could get CI at 18 I would. College is a such exciting experience and you want to experience as much as you can.

I re-read your post again and from what you said, it seems like you are fairly self-conscious when you were younger thus refused to wear hearing aids. CIs are generally big and shiny objects on your head, so if you are really self conscious and have short hair then you might want to think twice.

Get your new HAs first and see how you do with them. If all else fails, consider CI.
 
jillio said:
JennyB,

Your deafness is yours. You deal with it in the way that makes you most comfortable. Only you know the answers to that, and you should not conform to anyone else's expectations to make it easier for them. That is from both a parent of a deaf child and a counselor.

Secondly, you are doing fine. Judging from your posts, you are a very mature young lady; bright and articulate. You have given your situation a great deal of thought, and you have taken steps to do for yourself what you feel would be best for you. I want to commend you on your independence and efforts. Good for you!

Thirdly, your parents would benefit from professional counseling. (Perhaps, as counseling will only help those that are willing to receive help.) But their problem is not your problem and do not allow it to become so. I understand that you love them and want to make them happy, as well as have their approval, but you are not responsible for their difficuty in acceptance of your deafness, not thier denial. That is theirs to deal with. Love them as your parents, but do not allow their inability to accept either your deafness nor your decision to negatively impact your life. You are obviously well on your way to becoming a successful, well adjusted young adult. Keep moving forward.

If you have decided on the university that you will be attending, I would recommend meeting with disability services well before you start your first quarter or semester. Ask for everything that you think might be of assistance, including an interpreter. If you later decide that you don't need a service, it can be removed merely by signing a paper. It is much more difficult to get services added than removed.
Click to expand...

I went to speak with dis/ability services at Ryerson today. My prof refused to use the FM without me going. I have a 2 hour meeting with their communications counsellor next Wednesday. I will tell everyone how it goes!

I don't think my parents would go to counselling. To them I am the one who needs help, not them.

-Jenny
 
Kaitin said:
Hi, Jenny:

I haven't read all the replies and must logoff soon. but a quick thought:

I agree with Jillio about meeting with disability services. Bring your audiogram and other data from the audiology appointment (like comprehension scores) and maybe with a letter explaining from your audiologist (probably you don't need the letter, but it can't hurt). This will help you get service you need. When I started college I didn't want help, so I didn't understand in classes and had a very bad time. Please get all services you need so you can have a good education. :)

Parents are hard I know. Maybe your parents need some time. You said "after a few months of thinking long and hard" - how many months have your parents know about your hearing change? I hope after time they will calm about it and let you make decisions for your hearing.

But maybe your parents won't accept your deafness. At least for a long time. Now I know one of my brothers won't accept I am deaf. He refuses to sign most time. He even turns his back etc to make it hard to lipread. Ever since I was born my parents accept my deafness and not also. They learned ASL (but my mom wanted to learn ASL anyway). They use ASL at home. But when I was a kid we fought about me wearing HAs. And when I struggle in school, sometimes I think they just want to fix my hearing to make school easier. Now they accept I don't want CI soon - too long to explain but I don't - and I am so happy they accept. But I can feel they are waiting for me to change and get CI. So one way they accept I am deaf but another they always will want me hearing.

Maybe this is no help, but I want to say I understand. I hope soon things are better with your parents. :grouphug:
Click to expand...

My parents have known it's been worse for about 6 months now. That being said, we just got the new tests back recently...
 
kalboy said:
I think your situation is very similar to mine. Although I am much older than you， I went through the same phase you did when I was younger.
I assume that you don't use sign language because if you do you obviously can request interpreters at your college to help you with your classes. Learning sign language might be one solution but then again, not everybody picks up sign language quickly.

It is the best if you and your family start to consider CI. From your posting, I don't think you are against that option. Talk to a few CI surgeons and find out if you are a candidate.

I have sensorineural hearing loss. Pre-CI my audiogram shows a near flat line from 95 to 110 decibels. Now, 3 months after CI it is at 20 to 15 decibels.

If I could get CI at 18 I would. College is a such exciting experience and you want to experience as much as you can.

I re-read your post again and from what you said, it seems like you are fairly self-conscious when you were younger thus refused to wear hearing aids. CIs are generally big and shiny objects on your head, so if you are really self conscious and have short hair then you might want to think twice.

Get your new HAs first and see how you do with them. If all else fails, consider CI.
Click to expand...

I do know and use PSE/ASL with my Deaf friends. I use oral communication everywhere else though.

I am against getting a CI. Not for everyone but for me. I don't want to do something that is surgical, or permanent. I have no reason to.

I was ashamed of my hearing when I was in middle school, but what middle schooler isn't ashamed of anything about themselves! Now I really couldn't care less about what people think about my hearing aids.
-

-Jenny
 
JennyB said:
I went to speak with dis/ability services at Ryerson today. My prof refused to use the FM without me going. I have a 2 hour meeting with their communications counsellor next Wednesday. I will tell everyone how it goes!

I don't think my parents would go to counselling. To them I am the one who needs help, not them.

-Jenny
Click to expand...

Good. I'm glad that you got the process going with disability services. Keep us informed with your progress, and you can pm me with any specific questions you have if you want.

That isn't unusual. The one with the problem quite often attributes the difficulty to someone else.:cool: Maybe they will come around, maybe not. The important thing is that you keep taking care of your own needs at this point.
 
JennyB said:
My dad called me that night and told me he wanted me to see a surgeon and look into surgical options. At first I thought he meant investigating the possibility of a BAHA or CI and humored him and listened...but no he wants me to look into a surgical option that will physically fix my hearing so I no longer require assitive hearing devices at all [...] and even if there are I don't think I want to do it. My parents don't get that. They want me to "fix" myself, but I don't feel as though I am broken. To me...I am me. Being deaf is part of that. I don't think I want to be a hearing individual. Is that wrong of me? My parents feel as though I am being selfish for that choice. Ultamitly the decision is up to me...but do my parents have any argument here? Is this them in denile? Is this them being ashamed of me?
Click to expand...

I was in a similar boat not too long ago. Just stand your ground and refuse the surgery. I fought with my mom for months over that, and it was all worth it. My mom litterally told the ENT she wanted him to "fix" me. My loss isn't as severe as yours, but I still don't feel like I really belong in the hearing world. You're not being selfish, you're being true to yourself. It's taken my parents years to finally start accepting my hearing loss, and I hope that you resolve the conflict with your parents much sooner. Have you considered family therapy?

If you ever want to talk, feel free to contact me. :hug:
 
morbid-mongoose said:
I was in a similar boat not too long ago. Just stand your ground and refuse the surgery. I fought with my mom for months over that, and it was all worth it. My mom litterally told the ENT she wanted him to "fix" me. My loss isn't as severe as yours, but I still don't feel like I really belong in the hearing world. You're not being selfish, you're being true to yourself. It's taken my parents years to finally start accepting my hearing loss, and I hope that you resolve the conflict with your parents much sooner. Have you considered family therapy?

If you ever want to talk, feel free to contact me. :hug:
Click to expand...

I don't remember if I mentioned this earlier or not but I recently moved out on my own, and I am now about a three hour drive from my parents. Thankfully this means that I am incharge of my own Dr. appointments, and my own audi appointments. So I now go to all of my appointments alone too. I considered not keeping my parents up-to-date on everything but I don't think that would end well.

My parents have considered family therapy and I went with them once...the counsellor looked me straight in the eye and told me since I was a minor my parents are the ones who should be making these choices. She then said I should be tested for opositional defiance disorder. I don't have ODD. I simply don't want to have surgery in order to 'fix' something that isn't broken. Anyway that experience turned me off family counselling.
 
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