Daughter losing hearing

[BethJohnson]

Thank you all so much for having me here. This forum is really a great help for me. I am working single mother. My daughter is 10 yo and she has been losing her hearing slowly due to connective tissue disorder. It has been really hard for us. This has really turned our world upside down. My daughter seems to be sad all the time. I don't know how to support emotionally. I am trying to help her in every way I can. But whatever I do doesn't seem to work out. She seems to get more upset day by day...
Anyone going through the same... Please help...

 

[Tetracyclone]

She is no doubt feeling deeply isolated, in addition to other scary things about suffering a connective tissue disorder, like pain. There is a lot you cannot do, but if you can create a daily time with her when the 2 of you are just quiet and sharing physical closeness it might be a reassurance to her. People who get isolated deeply need closeness, like we need food.

 

[Sarfarigirl2011]

welcome! (learning ASL would be fun for her too)

 

[rosecottage]

I am so sorry, Beth. You have been given some good advice and wisdom so far, I hope others can be of help to you. I am also recently new to the forum. I began losing my hearing a few years ago. I am in my 60's. I have learned quite a bit of ASL. I took a course in it. But my family has never learned any. Over the years I have started to shut myself away more from people, because of health problems and because of not being able to hear in a hearing world. I have felt isolated as Tetra above remarks. Losing your hearing is difficult. I have had to work through a lot of sadness and grief.

When you are raising children, it is sometimes like walking on egg shells. I do understand that because I am a mother. I would see if she would be open to learning some ASL with you. Or maybe a class would be available that you could both attend. I realize as a single mom your time is limited. But maybe she would learn a word or two each day with you as you have some quiet time together.

Maybe there are some meetings in your area where deaf and hard of hearing children can socialize and support each other?

I am just thinking about want I would do with my child. I think it would be nice if she could find a hard of hearing or deaf friend.

These are just ideas.....take what is useful and throw out the rest.

Her sadness and grief are normal. She is probably scared, losing one's hearing is frightening. She may shut you out at times. Just be there for her and love her and take one day at a time. I wish you the best on your journey. And I hope others have some better wisdom for you.

 

[deafdyke]

Welcome! I know postlingal is rare. I'm not postlingal but I know the teen deafened people I know, found ASL and exposure to deaf culture, deaf ed and dhh peers very helpful. Contact your state's School for the Deaf. Maybe she could attend for a semester or a year or attend a local Deaf ed program. Bombard her with EVERYTHING. You don't need to worry about speech, so why not add ASL, and Cued Speech? What about looking into Deaf camp for this summer? There's a TON of options....state school based, sports, Christian and traditional. http://www3.gallaudet.edu/clerc-cen...l-resources-and-directories/summer-camps.html Also join American Society for Deaf Children http://deafchildren.org/

 

[Lysander]

Welcome! I know postlingal is rare. I'm not postlingal but I know the teen deafened people I know, found ASL and exposure to deaf culture, deaf ed and dhh peers very helpful. Contact your state's School for the Deaf. Maybe she could attend for a semester or a year or attend a local Deaf ed program. Bombard her with EVERYTHING. You don't need to worry about speech, so why not add ASL, and Cued Speech? What about looking into Deaf camp for this summer? There's a TON of options....state school based, sports, Christian and traditional. http://www3.gallaudet.edu/clerc-cen...l-resources-and-directories/summer-camps.html Also join American Society for Deaf Children http://deafchildren.org/

I'm sure that she is starting to feel isolated. She's recognizing that she can't hear other people the way that she used to. Conversations are becoming harder to understand and attempting to concentrate on what people are saying so intently, filling in the blanks, making guesses about what was actually said, is probably becoming exhausting. Her friends are probably getting tired of her saying "What?" during conversation so she's probably stopped asking, which is making her feel more excluded than she already felt. She's probably afraid that she's losing touch with everyone and she has no alternative at this point.

I would recommend starting to learn ASL. And I mean the entire family. I would consider getting her into things where she can meet other Deaf/HoH kids her age. Often you can do this by contacting your states Deaf school. If you're lucky, they'll be close by. If you're not, it could be hours away. However, often there are other programs in the area that might help. You can find Deaf meet-ups through different websites. If you're religious, you can often find church services that are deaf focused, or at minimum have interpreters with a Deaf congregation. There are ways that she can learn a new way of working through this. I'd also recommend finding her a good therapist. She's probably got a lot of feelings right now. And she needs to find a way to express them with someone who's personal emotions aren't going to make it harder to talk about something that's already hard to talk about.

One of the things I've noticed with my personal friends is that the denial/coming to terms with their HoH status and possible impending deafness is a really big obstacle. So many people who are late deafened fight against it thinking they'll learn how to do something "when it comes to that," not realizing that it's already on it's way to that. It might be time for a bit of harsh reality. She is probably becoming deaf. There's no stopping it. There's no bargaining out of it. There's only learning to understand and cope with her new normal. It's harsh and hard, but necessary. Things aren't the same as they used to be. And they're not going to be. No use fighting it. Eventually she'll learn to be happy with it.

 

[Isabells.r14]

Thank you all so much for having me here. This forum is really a great help for me. I am working single mother. My daughter is 10 yo and she has been losing her hearing slowly due to connective tissue disorder. It has been really hard for us. This has really turned our world upside down. My daughter seems to be sad all the time. I don't know how to support emotionally. I am trying to help her in every way I can. But whatever I do doesn't seem to work out. She seems to get more upset day by day...
Anyone going through the same... Please help...

Hey, I’m very sorry for your family and daughter for having to deal with this struggle. If any of you guys need to talk, especially you’re daughter, I’m here. I am 14 years old and starting losing my hearing around age 6 due to hereditary hearing loss. My father is deaf and I’m getting closer to that each day. I have hearing aids which are a big help but they are expensive in some places and can be annoying. I don’t know if she has them, can’t have them, or if they’d even work but if she personally is worried about it, let her know that I can relate and would love to talk!

 

[vegandreamer]

Hello and Welcome. learning to sign and counselling would be a good idea until she comes to terms with her deafness.

maybe a class would be available that you could both attend.

That's a good idea.

Just being there for your daughter would be a good idea.

 

[Swedeafa]

I grew up hearing and became HoH during my university years. I agree, do learn sign language as a family. Honestly, it makes tons of difference if you have to struggle communicating with your family, or if you can do it easily. Encourage her to find ways to compensate the hearing loss using vision instead. A lot of eye contact when communicating.

The good thing is that she is not the first one nor the only one to loose hearing. There are a lot people who handled deafness before. Many of them successfully with jobs they enjoy and families they love. Go and meet others in similar situation and find role models. Especially as a teenager it will be important for her to see that there are other people in her age that don’t hear as well. If there are no other Deaf kids around, I would even consider moving. Or at least make sure she goes to summer camps or school where she meets other Deaf children.

I assume people react very differently to her just because of the lack of hearing, so make sure she knows she is still the same person as before. It’s just the hearing that changes, not the rest of her. I mean if she loved strawberries and was good at math in school, nothing of that actually changes, right? It is important not to overestimate what deafness means. She needs a lot of creativity and self esteem to find out how to handle things without hearing. Hearing people around her won’t really know what to do, so she will most often be the one advocating and explaining. Don’t let her feel less capable just because of deafness. She definitely can have a wonderful life, as long as she is allowed to do things differently when needed and be more visual that the hearing peers.

See also Reddit/deaf, a great forum.