Adjustment to late onset deafness

dogmom said:
:ty: November Gypsy! How are you this morning? Yes, I remembered that you have LD too and so we have a couple of things in common. I think this is one reason why the forums are so important!
mothers, that's such an interesting relationship, in the twists and turns!
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I am a little depressed, if I can be completely honest. Am reallllyyyy struggling with some issues today. But, I'll pull through because I have always done so. *Smiles* It's really nice to meet someone who does understand about the LD, I have to tell you. *Sighs* And the thing that scares me the most about motherhood is that I am one, and I am terrified I'll wake up one morning and realize I'm exactly like my mother. I love her, but I'd put my baby in foster care first, and you have no idea how impossible that would be for me to do.

I don't know about you, but I think having an LD has actually helped me adjust to being hoh faster then I would have otherwise done. What do you think on that issue?
 
November Gypsy and Dogmom:
I would say that adjusting to your LD no doubt made it easier for you to adjust to your deafness. You already had the basic skills for accepting and dealing with adversity. You simply had to apply them to another situation.

The strongest, most amazing people I know are those that have put forth the effort to accept and overcome the obstacles that were put in their path. That effort, indeed, allows you to grow overall as a person, and to see life with a unique perspective of of tolerance and empathy and understanding. As a mother, what better example can you provide your child than the person her mother is as a result?

Jalestra:

I want to welcome you to our little group here. Stick around. I'm sure you will find the support and the suggestions that will make your struggles easier.
 
Thank you all so much for the warm welcome. It's a help simply knowing that I'm not the only one with these feelings. I say "Jeez I wish I was deaf already" and folks look at me like I'm nuts. I try to enjoy hearing what I can while I can, because I know it's not going to be forever, but sometimes it's just so frustrating.

My mother is the only one supportive, but that's kind of because it gets her attention. "Your daughter's going deaf? You poor thing!" I'll take what I can get.

Gypsy, I know I CAN have a good life, but this contentedness with my situation will be severely put to the test the day I wake up hearing nothing. I don't know if I can deal with it myself while taking care of all the adults who have refused to accept the situation. It will be hard enough on the children and myself. In a sense, I'm lucky in that it's progressive because I don't have to deal with it all at once, I can adjust in increments as needed, but everyone else must adjust as well.

Dogmom, I sure relate. My first significant loss of hearing it was my husband with the "try harder" . We finally ended up having it out and I told him, "chop off a finger, if it doesn't grow back then you aren't 'trying hard enough'". He still sees it as "giving up", but jeez, it's not like you can just fix it. If you could this group wouldn't exist. At least he's shut up about it.

I think one of my biggest issues is the expense. Until I'm diagnosed as hearing impaired, I'm on my own. But the diagnosis costs money we just don't have. Not to mention I really don't want to waste money on yet another doctor that blows me off when I try to explain about how my hearing is affected...or defective. I'm fixing to move to Houston in a couple of months, so if any of you know anything about the area and can direct me to a GOOD doctor, I'm willing to undergo the expense. I just don't like the idea of jumping from doctor to doctor until I find one who listens. I trust my first doctor's diagnosis. Even when he was worried I'd sue him he still told me. It's really not his fault, but you know how sue happy people are sometimes.

It really bothers me how we're the deaf/HoH ones and they are the ones who won't listen.
 
Re: "the adults that refuse to accept the situation." Please keep in mind that it is not your job to take care of them. They need to learn to take care of themselves. Your job is to take care of you.
 
For Jalestra, after you are diagnosed you are on your own too. Unless you are looking for Cochlear implant.
 
Not looking for anything requiring surgery. LOL I've been put in contact with a couple of groups in this area, but until you are diagnosed they don't want anything to do with you. I can't get them to understand I need HELP getting diagnosed! Finding a good doctor and such. The most help I have gotten is "you need to see an audiologist, not an ear doctor". Which was great, because I was seeing an ear doctor, but no suggestions of a good audiologist.

Jillio, I know they are their own responsibility, but I know what's going to happen. I'm going to lose my hearing completely and they are all going to be scrambling to catch up. I just don't know how my reaction will be. It's one thing to get used to HoH and face the fact you are going deaf, but it will probably be quite another to BE deaf. I hope I can wake up and say "I knew this was coming and it's just another day with a new snafu", but I don't know. I'm doubting it'll be that simple. How do I know they will be there to help with the children and the final adjustment if I can't even get them to accept and adjust to this? I just don't think it'll be fair of them to be suddenly adjusting when I, the person most affected, has to shore them up so they can help me. I have kids, I wouldn't feel comfortable internally processing unless I knew someone was there watching over them. I don't even know what's going to happen. Will I wake up deaf? Will I be sitting on the phone and suddenly be deaf? On one hand I can see it easily being like losing a dear friend and needing some time to grieve, but on the other I've been adjusting to hearing loss for 3 years, so maybe it's just going to be "ah, there it is. Time for plan A!". Of course none of you guys can tell me that, but not knowing means I'll need my family more. If it wasn't for the children I'd let the adults be, but I have to prepare for the kids too. At least I feel I do.

I do have a question for other HoH folk, do you guys ever "reboot"? Something that's been happening since my first significant hearing loss, sometimes the noises will overwhelm me. Too much noise conflicting and it's like my brain says "I GIVE UP! WE'RE SHUTTING DOWN!". I zone out for a second and am completely deaf for a short time (about 15 minutes or so). And it's not necessarily loud noises, just conflicting noises. I call it rebooting, it kind of reminds me of a messed up computer I once had LOL
 
Yes, 'rebooting' happens to me all the time sweetie. I'd never thought of calling it that, but that's a perfect name for it! *High five to you* I wish with all my heart I had some good advice to give you. All I can say is that I know it isn't easy, because I'm right there with you, but I know also that there comes a point where you (or at leat I ) feel calm and peaceful about it. It's like my soul knows that I can't go on stressing, so I calm down. I understand your predicament with your family. Kids are tougher then they appear, generally. I think if you just tell them the facts, admit that it's scary, but that it doesn't mean life isn't going to be fun or good anymore, that they will adjust better then some adults I've seen. My family isn't too eager to adjust either. I keep being told that I need to stop thinking negatively...but I'm not! I'm just trying to be real. I. Am. Going. Deaf. That is a fact of my life. It's hard sometimes, and others it seems like it has always been...but either way it's the way it is. I have it lucky in that my husband married me knowing that I was losing my hearing and my baby has always had me be an hoh mother. She doesn't care, she still loves me, and I'm willing to be that the kids will still love you just as much as ever. My family on my husband side has been great, and I've been really blessed that way. (By the way, I started going deaf when I was 19, and now am tettering on the edge at 23).

I want to assure you that you can rant here. You will get support. You will find that others know exactly what you mean. You are not alone sweetheart. Not at all. *Smile and hug*
 
Jalestra said:
Not looking for anything requiring surgery. LOL I've been put in contact with a couple of groups in this area, but until you are diagnosed they don't want anything to do with you. I can't get them to understand I need HELP getting diagnosed! Finding a good doctor and such. The most help I have gotten is "you need to see an audiologist, not an ear doctor". Which was great, because I was seeing an ear doctor, but no suggestions of a good audiologist.

Jillio, I know they are their own responsibility, but I know what's going to happen. I'm going to lose my hearing completely and they are all going to be scrambling to catch up. I just don't know how my reaction will be. It's one thing to get used to HoH and face the fact you are going deaf, but it will probably be quite another to BE deaf. I hope I can wake up and say "I knew this was coming and it's just another day with a new snafu", but I don't know. I'm doubting it'll be that simple. How do I know they will be there to help with the children and the final adjustment if I can't even get them to accept and adjust to this? I just don't think it'll be fair of them to be suddenly adjusting when I, the person most affected, has to shore them up so they can help me. I have kids, I wouldn't feel comfortable internally processing unless I knew someone was there watching over them. I don't even know what's going to happen. Will I wake up deaf? Will I be sitting on the phone and suddenly be deaf? On one hand I can see it easily being like losing a dear friend and needing some time to grieve, but on the other I've been adjusting to hearing loss for 3 years, so maybe it's just going to be "ah, there it is. Time for plan A!". Of course none of you guys can tell me that, but not knowing means I'll need my family more. If it wasn't for the children I'd let the adults be, but I have to prepare for the kids too. At least I feel I do.

I do have a question for other HoH folk, do you guys ever "reboot"? Something that's been happening since my first significant hearing loss, sometimes the noises will overwhelm me. Too much noise conflicting and it's like my brain says "I GIVE UP! WE'RE SHUTTING DOWN!". I zone out for a second and am completely deaf for a short time (about 15 minutes or so). And it's not necessarily loud noises, just conflicting noises. I call it rebooting, it kind of reminds me of a messed up computer I once had LOL
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I don't mean to sound harsh...truly I don't...but the fact is that you will be going deaf whether your friends and famly understand, empathize, and support you or not. Take care of yourself. Do what you need to do to accept and adjust. Your example will provide the guide that they will follow.
 
CBE's post on considering herself deaf set me thinking: at what point is one supposed to consider themselves deaf? When they can't hear anything at all anymore, or before that? I can't understand the spoken word anymore, but I can hear very loud noises. Does that mean I'm still HOH...or what? *Looking confused*
 
November Gypsy said:
CBE's post on considering herself deaf set me thinking: at what point is one supposed to consider themselves deaf? When they can't hear anything at all anymore, or before that? I can't understand the spoken word anymore, but I can hear very loud noises. Does that mean I'm still HOH...or what? *Looking confused*
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That is really a personal decision. There are those that consider themselves to be deaf with a moderate loss, and there are also those with a profound loss who do not consider themselves to be deaf. Particularly with those who have lost their hearing at a later time, identifying themselves as deaf rather than HOH creates a feeling of hopelessness for them. Some, until they have adjusted psychologically to the changes in their life, feel that to identify themselves as "deaf" accentuates the fact that they are no longer hearing, and therefore, dratically different from who they used to be, while HOH means that they still have some hearing, and therefore, the difference is less.
 
I see what you mean...I begin to think that I would be less prone to depression, on the whole, if I could just be comfortable with saying and feeling 'I am deaf.' The HOH thing is more comfortable on one hand, but on the other, I have a feeling I'm deluding myself...hence the great tramua in not getting the new hearing aids I thought I was going to get. It's not that they were going to change things that much, but I got so hopeful. I'm going to have to think about this, I see.
 
:ty: for kind thoughts, Jillio!

Am sorry you felt depressed yesterday, November Gypsy, is today a better day?
Bear with me, but speaking as someone who does not have children, I bet a lot of people who are new moms or who will be new moms, are scared regardless of how they're parents were or what the situation is. Sometimes for a variety of reasons things get pretty challenging for me/us too and I try to take a minute at some point to observe and think, how is THIS moment? Can I find peace in this moment?
Yes, I think having LD has helped me with the hearing loss because I already have something where I had to learn various ways of "being" in the world and coped with mis-understandings and frustrations. It helps that my husband has been very hoh since birth and he is severely deaf without his HA's. I also happen to know several other people with various degrees of hearing loss in my area; two of whom are Deaf <one being my friend/ASL tutor who I got together with last week>. My Tai Chi-practice friend happens to be hoh and another friend of mine is oral deaf. My mom, in her late 70's, has a age-related loss which she readily admits to.

Jalestra, hope u and your husband will have better times and can learn from each other. I know it can very hard -

:grouphug:
 
November Gypsy said:
I see what you mean...I begin to think that I would be less prone to depression, on the whole, if I could just be comfortable with saying and feeling 'I am deaf.' The HOH thing is more comfortable on one hand, but on the other, I have a feeling I'm deluding myself...hence the great tramua in not getting the new hearing aids I thought I was going to get. It's not that they were going to change things that much, but I got so hopeful. I'm going to have to think about this, I see.
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You are just in the process of completing your acceptance. But you see that sometimes the way you feel about it emotionally is not the same as the way it might be seen from a logical standpoint. The key is to bring the two into line with each other. As you said, continue to think about it, and you will have new insight.
 
You are right, of course. I didn't really suppose that my fears about motherhood were particular to me. I just get so worried. *Smiles* Thank you so much for asking. I am, let us say, more resigned today. Yesterday was bad because I found out that I won't be able to get the new hearing aids I was looking forward to and because I realized that I hadn't eaten in three days, which means that I'm not handling my anoxeria as well as I was. Today, I am a little more able to face the music, as it were. Thanks again for asking! *Big hugs*
 
dogmom said:
:ty: for kind thoughts, Jillio!

Am sorry you felt depressed yesterday, November Gypsy, is today a better day?
Bear with me, but speaking as someone who does not have children, I bet a lot of people who are new moms or who will be new moms, are scared regardless of how they're parents were or what the situation is. Sometimes for a variety of reasons things get pretty challenging for me/us too and I try to take a minute at some point to observe and think, how is THIS moment? Can I find peace in this moment?
Yes, I think having LD has helped me with the hearing loss because I already have something where I had to learn various ways of "being" in the world and coped with mis-understandings and frustrations. It helps that my husband has been very hoh since birth and he is severely deaf without his HA's. I also happen to know several other people with various degrees of hearing loss in my area; two of whom are Deaf <one being my friend/ASL tutor who I got together with last week>. My Tai Chi-practice friend happens to be hoh and another friend of mine is oral deaf. My mom, in her late 70's, has a age-related loss which she readily admits to.

Jalestra, hope u and your husband will have better times and can learn from each other. I know it can very hard -

:grouphug:
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It sounds as if you have a great bunch of people making up your personal support system. That is very important.
 
jillio said:
You are just in the process of completing your acceptance. But you see that sometimes the way you feel about it emotionally is not the same as the way it might be seen from a logical standpoint. The key is to bring the two into line with each other. As you said, continue to think about it, and you will have new insight.
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I see. Yes. I will do that. I have a feeling my husband will find it just as hard, if not harder, to go from HOH to deaf. But, he'll be supportive, I know. It just didn't really occur to me that I could be considered deaf yet...I had assumed that it was only when you couldn't hear anything or when you had a CI. That's silliness, I know see.
 
November Gypsy said:
You are right, of course. I didn't really suppose that my fears about motherhood were particular to me. I just get so worried. *Smiles* Thank you so much for asking. I am, let us say, more resigned today. Yesterday was bad because I found out that I won't be able to get the new hearing aids I was looking forward to and because I realized that I hadn't eaten in three days, which means that I'm not handling my anoxeria as well as I was. Today, I am a little more able to face the music, as it were. Thanks again for asking! *Big hugs*
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It is natural to relapse from time to time into your anorexic behaviors. But it also sounds as if you are aware of it, and do what you need to change the behavior. That is the key to your recovery....realizing when your behaviors are unhealthy for you and doing what you need to do to change them. Don't be too hard on yourself. :hug:
 
It's good to know that it's not an unusual thing to happen, I guess...but it's scary. It would be so nice to be able to eat and enjoy it, you know? Oh, well. At least I managed to eat today, that's the important thing. I can't be not eating with a husband and a baby to care for, that is, quite honestly, the only reason I can make myself eat at all. Thanks for the hug! Much appriecated!
 
November Gypsy said:
It's good to know that it's not an unusual thing to happen, I guess...but it's scary. It would be so nice to be able to eat and enjoy it, you know? Oh, well. At least I managed to eat today, that's the important thing. I can't be not eating with a husband and a baby to care for, that is, quite honestly, the only reason I can make myself eat at all. Thanks for the hug! Much appriecated!
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You are correct...the important thing is that you have eaten today. And a little fear is often a good thing. Being a bit afraid of lapsing back into full blown anorexia will keep you doing what you need to do to prevent that.
 
Ohhhh, I understand you had hoped to get the new HA's and now that has changed....impermanence is hard too. And it is understandable and fine to be scared about motherhood regardless of other peoples' fears - just saying I don't think you are alone in this fear....any parent support groups in area? And/or support group for people HOH? But I think the fact that you are AWARE is sooo important, especially about the eating -anorexia is very scary! My first year of college I dealt with that, don't think it was ever "full-blown" but I remember the feelings I had at the time.

Yes, Jillio my support system for hearing loss better actually than the LD, which is EXTREMELY difficult for many people without LD or who aren't in Ex.Ed field as parents or teachers to understand.

I am glad for both your words <big smile>!
 
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