Completely Lost...

[JadeSkye]

I was not sure if I should start here or in the introduction forum... So I am going with this one. Like the title says, I am completely lost at the moment and feel like I am spinning my wheels. I am a hearing parent with two daughters, a 7 year old who is hearing and a 3 year old who appears to be deaf or hard of hearing. I say appears to be because we really have no answers at this moment.

At the beginning of December we thought that our youngest was having a time of being stubborn, not wanting to listen to us AT ALL. My husband said it appeared to be that way for a week or two (so maybe mid-November this started) but I hadn't really noticed much because currently I work and he is a stay at home dad, so he deals with the kids more than me. We had the kids stay that first weekend in December at my mom's and when she brought them home she said "I really think she is not hearing anything" (we had talked about that possibility when we dropped her off at mom's but kinda shrugged it off). So, that day we took her to the ER to see if we could get any answers. ER doctor looked in her ears, no obstructions or fluid or anything that would be cause for concern- but he did a test with the tuning fork (I think that is what it is called) and agreed that it appeared she had some sort of hearing loss in both ears. ER doctor prescribed steroids and sent us home. We spoke with her primary doctor and agreed that we were not comfortable giving her the steroids (really didn't know what benefit they would have) so did not give her the round of oral steroids. Took her to her primary doctor a few days later and they said the same thing (no real tests except to watch how she responded when spoken to and how we communicated with her- the really did not have equipment to do full hearing test). They referred us to a local children's hospital (Nemours) for the Otolaryngologist and we just went to that appointment this past Monday (I about went crazy waiting a whole month to see them!). The audiologist there looked in her ears and did the air in her ears test (not sure of technical name) and said everything looked fine on that end. No wax build up, no fluid, ear drum works fine and responded perfectly to the air test, which means that her Eustachian tubes are working correctly and there shouldn't be a build up of fluid in her middle/inner ear. We attempted to do the hearing test with headphones on and she wanted nothing to do with having headphones on her head (before all this, she use to enjoy listening to my sister's IPod with earbuds or watching movies in my mom's car with headphones on- now she won't let you near her with earphones of any sort). SO, needless to say, we did not get the most important test done . Now they are referring us to Wolfson's hospital to have a Sedated ABR done so we can determine what kind of hearing loss she has.

I really hope that was not too much information or too boring, I just feel it best to give all the information so maybe someone can give some advice or ideas. I am beginning to feel all kinds of things at this moment and don't know what to do with it all. I am the type of person who likes to plan and know what to expect in a situation. And this situation has me waiting on doctors and tests and everyone else to learn anything about what is going on. Part of me wants to hold out hope that her hearing will come back (please don't hate me for that- this is a culture and world that I really know nothing about and I am so afraid of failing her in it). But the biggest part of me seems to already know that there really isn't any hope of that, that somehow my 3 year old daughter became deaf apparently over night (that's what it feels like, although I am sure it was more gradual than that) and now there is a whole lot of stuff I have to learn and I feel like I can't learn it fast enough. I want to be able to make plans, get intervention in place, begin looking at schools for her to go to (we live within 45 minutes of Florida School for the Deaf and Blind and that would be my ideal placement but I have no clue if that would even be a possibility). I am beginning an online course for beginning ASL through FSDB next week (thank goodness they offer free classes to parents of deaf/hoh children and when I explained my situation they were still willing to let me enroll), but I still feel like that is not enough... Right now I feel like I can't breath (maybe that is what I need to do- stop thinking and breath)!

Again, sorry this is so long. I tend to be a bit "wordy" when I write, I want to make sure that everything is understood and I don't forget anything. Also, if anything I write is confusing or doesn't make sense, please let me know. I understand that ASL has a different grammatical structure than English and I really am not sure how that translates over to my writing style being easy to understand for those who's main language is ASL (I hope that did not come off as insensitive or stupid- I just want to make sure I am not doing things wrong). Ok, I am going to shut up before I truly write a book (like my husband just accused me of doing). I guess I really just need support and encouragement for this journey, because I have no clue how long until I have real answers... Thanks for "listening".

 

[Sarfarigirl2011]

for me, I became this way after birth (I had worn hearing aids at 6 months of age)

 

[Bottesini]

Better wait and see what the doctors tell you.

Autism can sometimes manifest at that time too, if she was a speaking, hearing , child before?

A sudden loss of speech would be more indicative of autism . Unless she had no speech at three years old?

 

[JadeSkye]

Bottesini- thanks for the idea. I actually had a friend ask me about that thought when it first happened (that it might be autism) but I honestly don't think it is. Yes, she has been developing speech normally but since December there has been a distinct change in her speech, even in the words she already knew. It is more mumbled/muffled and altogether unclear- I understand less than half of what she is saying most days when before I understood at least 90%. The big thing for me that makes me believe it is not autism (besides a gut feeling- which we can't always go on) is that her behavior has not really changed. She is still the same kid except for small things, all things that seem to be related to hearing. For instance, she no longer wants to wear ear phones or ear buds (as evidenced by the hearing test we were unable to complete because she wouldn't cooperate)- before she LOVED wearing earbuds and listening to the IPod or earphones in the car to watch a movie. Now, she could care less if there is any volume on the tv- before she would tell you to turn it up if it was too low. Now, she doesn't even want to talk on the phone (before she practically fought me to get to talk on the phone- she loved talking on the phone!)- now she just holds it in her hand and looks at it, today my mom asked me to put her on the phone (mom does this now- I think she is holding some hope that she will hear her, which I understand) and after me helping her put it to her ear she looks at me and says "no one's there". She use to tell me "mommy, beep beep" when the alarm on our microwave or stove went off, now she doesn't. She has been louder and screaming more, but I honestly think that is because she can't hear it (and maybe with the screaming, maybe she is feeling some vibration so she does it to kind of "test" things). My understanding of autism is that there would be a pretty drastic behavior change as well and really all of her changes appear to be associated with hearing. She will even cover her eyes when you are trying to talk to her if she doesn't want to "hear" what you have to say (like when she is in trouble). I can do some research on autism to see what the links might be, but it just doesn't seem to me that it could be that.

Also, she feel down some steps at the end of October and her and her sister said that she had fallen off the toilet and hit her head on the tub one morning (possibly the week we discovered the hearing loss- it was early morning and we weren't up and around yet, but it was not a bad enough fall for goose eggs or her to scream profoundly). I have read some about falls contributing to hearing loss, but am not sure if that could be her case. The doctor does not seem to think at this moment that it would be the cause, but I can't rule it out either... I hope it is not offensive that I automatically jumped to her being deaf, but please believe me that I have thought about possibilities and done crazy "tests" of my own (honking horn at her, etc) and it all has just led me to believe that it has to be a hearing loss. I do appreciate your thoughts- a little curious as to how you jumped to autism instead of deafness, though

 

[JadeSkye]

Oh, I guess it is important to note that she hasn't really "lost" her speech. It is becoming harder to understand, but that has just been happening slowly and I am thinking that is because she can't hear how she is pronouncing things. She still talks just as much as she use to, although more and more of it is becoming gibberish or babble sounding to me- but I can still pick out words and she is still communicating... Not sure if that makes a difference in the thought that it could be autism or not, though...

 

[JadeSkye]

Strange, I had posted a pretty long reply to you, Bottesini and then came back to add the part about her not really losing her speech, but that part has posted and the other didn't... (It did say that it had to be approved by mods, maybe because it was a little long.) So, there should be a better reply coming, I guess (if mods approve it).

 

[Bottesini]

Oh, I guess it is important to note that she hasn't really "lost" her speech. It is becoming harder to understand, but that has just been happening slowly and I am thinking that is because she can't hear how she is pronouncing things. She still talks just as much as she use to, although more and more of it is becoming gibberish or babble sounding to me- but I can still pick out words and she is still communicating... Not sure if that makes a difference in the thought that it could be autism or not, though...

Yes, it does make a difference if she is still engaging with you and probably is not autism.

Hopefully you will get answers from your doctor soon and know how to proceed.

 

[deafdyke]

Yes, it does make a difference if she is still engaging with you and probably is not autism.

Hopefully you will get answers from your doctor soon and know how to proceed.

I was going to say if she's still talking but in gibberish and babble sounds, that sounds very much like a hearing loss, and hopefully not autism.

 

[deafdyke]

want to be able to make plans, get intervention in place, begin looking at schools for her to go to (we live within 45 minutes of Florida School for the Deaf and Blind and that would be my ideal placement but I have no clue if that would even be a possibility). I am beginning an online course for beginning ASL through FSDB next week (thank goodness they offer free classes to parents of deaf/hoh children and when I explained my situation they were still willing to let me enroll), but I still feel like that is not enough

Nope, that would be enough.......and that would be AWESOME if she got to attend FSDB! If she attends FSDB,(which would be amazing.....as most if not all deaf school programs are outstanding for early childhood) she would get pretty much everything at school..(including speech therapy, as it's a big enough school that it has orally skilled and HOH kids) ...All you'd have to do is learn ASL!

 

[JadeSkye]

Thanks for the encouragement, deafdyke. It helps to know that people think I am handling things right because sometimes I feel like I am just spinning in circles. Think I will take my butt to bed now, need to make my brain shut off so I can get up for work in the morning . Thanks again for the kind words .

 

[deafdyke]

Thanks for the encouragement, deafdyke. It helps to know that people think I am handling things right because sometimes I feel like I am just spinning in circles. Think I will take my butt to bed now, need to make my brain shut off so I can get up for work in the morning . Thanks again for the kind words .

The most important thing is to have a healthy attitude about your child being dhh. Then that way you can raise them with a very healthy positive attitude about being dhh. I know it's unexpected and you're dealing with the surprise.....but soon you won't even think twice about it.
Other then that you're pretty much all set!!! (well except for getting her a concrete dx)
Do try as hard as possible to get her in at FSDB. It's a superb Deaf School. Not to mention that the Early Childhood (note I said early childhood) programs at Deaf Schools are AMAZING, and you generally won't find the quality of programming any where else (even at a local dhh regional program)

 

[ContessaC]

I was not sure if I should start here or in the introduction forum... So I am going with this one. Like the title says, I am completely lost at the moment and feel like I am spinning my wheels. I am a hearing parent with two daughters, a 7 year old who is hearing and a 3 year old who appears to be deaf or hard of hearing. I say appears to be because we really have no answers at this moment.

At the beginning of December we thought that our youngest was having a time of being stubborn, not wanting to listen to us AT ALL. My husband said it appeared to be that way for a week or two (so maybe mid-November this started) but I hadn't really noticed much because currently I work and he is a stay at home dad, so he deals with the kids more than me. We had the kids stay that first weekend in December at my mom's and when she brought them home she said "I really think she is not hearing anything" (we had talked about that possibility when we dropped her off at mom's but kinda shrugged it off). So, that day we took her to the ER to see if we could get any answers. ER doctor looked in her ears, no obstructions or fluid or anything that would be cause for concern- but he did a test with the tuning fork (I think that is what it is called) and agreed that it appeared she had some sort of hearing loss in both ears. ER doctor prescribed steroids and sent us home. We spoke with her primary doctor and agreed that we were not comfortable giving her the steroids (really didn't know what benefit they would have) so did not give her the round of oral steroids. Took her to her primary doctor a few days later and they said the same thing (no real tests except to watch how she responded when spoken to and how we communicated with her- the really did not have equipment to do full hearing test). They referred us to a local children's hospital (Nemours) for the Otolaryngologist and we just went to that appointment this past Monday (I about went crazy waiting a whole month to see them!). The audiologist there looked in her ears and did the air in her ears test (not sure of technical name) and said everything looked fine on that end. No wax build up, no fluid, ear drum works fine and responded perfectly to the air test, which means that her Eustachian tubes are working correctly and there shouldn't be a build up of fluid in her middle/inner ear. We attempted to do the hearing test with headphones on and she wanted nothing to do with having headphones on her head (before all this, she use to enjoy listening to my sister's IPod with earbuds or watching movies in my mom's car with headphones on- now she won't let you near her with earphones of any sort). SO, needless to say, we did not get the most important test done . Now they are referring us to Wolfson's hospital to have a Sedated ABR done so we can determine what kind of hearing loss she has.

I really hope that was not too much information or too boring, I just feel it best to give all the information so maybe someone can give some advice or ideas. I am beginning to feel all kinds of things at this moment and don't know what to do with it all. I am the type of person who likes to plan and know what to expect in a situation. And this situation has me waiting on doctors and tests and everyone else to learn anything about what is going on. Part of me wants to hold out hope that her hearing will come back (please don't hate me for that- this is a culture and world that I really know nothing about and I am so afraid of failing her in it). But the biggest part of me seems to already know that there really isn't any hope of that, that somehow my 3 year old daughter became deaf apparently over night (that's what it feels like, although I am sure it was more gradual than that) and now there is a whole lot of stuff I have to learn and I feel like I can't learn it fast enough. I want to be able to make plans, get intervention in place, begin looking at schools for her to go to (we live within 45 minutes of Florida School for the Deaf and Blind and that would be my ideal placement but I have no clue if that would even be a possibility). I am beginning an online course for beginning ASL through FSDB next week (thank goodness they offer free classes to parents of deaf/hoh children and when I explained my situation they were still willing to let me enroll), but I still feel like that is not enough... Right now I feel like I can't breath (maybe that is what I need to do- stop thinking and breath)!

Again, sorry this is so long. I tend to be a bit "wordy" when I write, I want to make sure that everything is understood and I don't forget anything. Also, if anything I write is confusing or doesn't make sense, please let me know. I understand that ASL has a different grammatical structure than English and I really am not sure how that translates over to my writing style being easy to understand for those who's main language is ASL (I hope that did not come off as insensitive or stupid- I just want to make sure I am not doing things wrong). Ok, I am going to shut up before I truly write a book (like my husband just accused me of doing). I guess I really just need support and encouragement for this journey, because I have no clue how long until I have real answers... Thanks for "listening".

Did you see Dr. Horlbeck? ... He's awesome.

 

[JadeSkye]

ContessaC- No (although when I looked at their bios online he was the one I would have picked ). We saw Dr. Sprecher. He seemed really nice, took the time to answer my (almost) hysterical and far fetched questions. He did look a little confused through most of the appointment- not sure if that was because he couldn't really figure out what might have caused her loss or because he was worried I might cry at any moment (I felt tears of frustration a few times because I had pinned my hopes on having some answers that day and we really got nothing except a confirmation that it doesn't look like a problem with her ears themselves).

We WILL be seeing Dr. Horlbeck on February 14th though- WE GOT THE ABR SCHEDULED TODAY !! Dr. Horlbeck will be clearing her ears before we go over to Wolfson's for her to have the ABR done ! I hate having to wait a whole month longer, but at least I have a date now .

ContessaC- Do you mind me asking, do you have a child that is dhh? It is nice to see someone on here that lives "nearby" (we live in Putnam County, so about an hour and fifteen from Jacksonville at the most). Do you mind if I "friend" you (can you do that on here)?

 

[deafdyke]

ContessaC- Do you mind me asking, do you have a child that is dhh? It is nice to see someone on here that lives "nearby" (we live in Putnam County, so about an hour and fifteen from Jacksonville at the most). Do you mind if I "friend" you (can you do that on here)?

That would be awesome, as Contessa's son goes to FSDB!!!!!!!!

 

[JadeSkye]

I've had read a few posts of her's and noticed that, deafdyke . Maybe it is a good sign that someone on here saw my post and they live "near" me and their kid goes to the school I would hope to put my daughter in ... I know I have jumped the gun by joining here without a true diagnosis but it is just one of those "gut" feelings and I think that this is going to be our life now. I really appreciate everyone's encouragement and kind words- this is scary at times and it helps to know other people who are dealing with these changes in their lives .

 

[deafdyke]

I've had read a few posts of her's and noticed that, deafdyke . Maybe it is a good sign that someone on here saw my post and they live "near" me and their kid goes to the school I would hope to put my daughter in ... I know I have jumped the gun by joining here without a true diagnosis but it is just one of those "gut" feelings and I think that this is going to be our life now. I really appreciate everyone's encouragement and kind words- this is scary at times and it helps to know other people who are dealing with these changes in their lives .

It is scary, but remember it's just like with anything else unexpected. At least there's been a lot of people who have trod your path.We've got your back....and the thing is, a lot of us know what you're going through, even thou many of us are Dhh people, and not hearing parents of dhh kids. It took me decades to come to terms with being HOH. Now I have, and it's a lot better emotionally speaking. Think about it this way......your daughter isn't "hearing impaired" but has a potential ticket into a culture/way of thinking that will allow her to see herself as a strong Deaf person.
Instead of seeing this as something "scary" think of yourself as an explorer in a new land, discovering things!
And at least you're near FSDB! That is an AWESOME resource.....It would be SO cool if your daughter got to go there for at least early childhood/early elementary grades.....and even longer!

 

[JadeSkye]

Instead of seeing this as something "scary" think of yourself as an explorer in a new land, discovering things!

I definitely get that thought... I have always been a little resistant to change (it makes me nervous, the unknown of it) but I know that this isn't as scary as if she had health problems or something like that. Unknown just really freaks me out . I think the biggest worry I have is being accepted by the Deaf community (and finding one near us that we can get to know well). I know it is going to be quite a while before my ASL will be acceptable and probably intelligible and I know that I will have a hard time keeping up. I am shy to begin with when meeting new people and I don't want that to be taken as being rude (which it sometimes is with hearing people even)- I usually don't speak unless I feel comfortable either and I am sure that would be the same with signing. I do enjoy learning new things (people and cultures) but I usually do it from a distance until I am comfortable- guess I will just have to learn how to be more bold and less self conscious .

 

[deafdrummer]

It begs a few questions, your experience. Why didn't they do a simple hearing test to determine if she was going deaf? That's what was used to determine that I was deaf, a tuning fork and an audiogram (I don't remember how the 'gram was done, since I didn't have language, just a few words. I don't think they were using ABR on older children, though I vaguely remember being in a medical facility and having wires on my head. I can't tell if that really happened or not. How did they determine the type of deafness in the early 70s? And how can I today ask for clear, incontrovertible proof that I have nerve deafness and not something with the bones of the ear?

Your daughter's behavior might be fear and panic at the loss of her hearing. It sounds like she gets angry because she's being reminded of something she's losing. She will have to come to the point of grieving this loss and heal from this. I know what this was like. Between 3 and 5 years old, I would open Gray's Anatomy book and go to the cellophane pages, get Mom's attention, and when she wasn't getting it, I would get frustrated and cry myself to sleep on top of the book. I gave up around 5, and it wouldn't be determined that I was deaf until over two years later. I remember the "looking at the book part," but I don't remember crying myself to sleep on the book. Mom told me about that years later. Just too painful to try to remember. It's a bitch, I tell you, and it would help to get her into the school folks here are recommending. She has to know that this is not the end of the world, but a shift into a very different world.

Let us know how things turn out, I'm keeping this tab open until you let us know. Good luck and hang in there!

 

[JadeSkye]

It begs a few questions, your experience. Why didn't they do a simple hearing test to determine if she was going deaf?

In the ER the doctor did use a tuning fork. When he put it to her right side the first time she moved towards me, but she is also a shy child and I think she was moving more from him than any sound at that moment. I explained to her that it was ok and he put it to her other side and then back to her right side and on top of her head- no response from those (when he put it to the top of her head she did tell me after he left the room [while touching the top of her head] "that funny, it goes bong bong bong" so she might have been feeling the vibrations from it being on top of her head? That doctor never came back in the room so I didn't get a chance to mention that to him). At her regular doctor's office they do not have the equipment to do the hearing tests but they did watch her responses to people and sounds and felt it best to refer her to an audiologist. At the audiologist, they looked at her ears (which are fine) and tested the function of the ear drum with air (which is fine). We attempted to do a hearing test with headphones on but she wanted nothing to do with it so there was no way we were going to get an accurate account of what she was hearing when she wouldn't even let us put the headphones on her for more than a second or two. This is why they suggested the ABR- it is really our best option at this point to get some real answers as to what her loss might be and what is going on.

 

[deafdyke]

I definitely get that thought... I have always been a little resistant to change (it makes me nervous, the unknown of it) but I know that this isn't as scary as if she had health problems or something like that. Unknown just really freaks me out . I think the biggest worry I have is being accepted by the Deaf community (and finding one near us that we can get to know well). I know it is going to be quite a while before my ASL will be acceptable and probably intelligible and I know that I will have a hard time keeping up. I am shy to begin with when meeting new people and I don't want that to be taken as being rude (which it sometimes is with hearing people even)- I usually don't speak unless I feel comfortable either and I am sure that would be the same with signing. I do enjoy learning new things (people and cultures) but I usually do it from a distance until I am comfortable- guess I will just have to learn how to be more bold and less self conscious .

Agreed! At least with Deafness, you get an introduction to an amazing world and culture!!!!
First of all, the Deaf Community LOVES hearing parents of dhh kids who realize the value of ASL and Deaf schooling. As long as you make an effort you will be accepted.....and I'm pretty sure that the Deaf community around FSDB is very diverse, since the population at FSDB is really diverse (meaning a lot of HOH and orally skilled kids)....Are you afraid that you'll be the only hearing parent, trying to interact with a voice-off Deaf community? A lot of Deaf adults have had speech training before. And it can be sometimes hard for a hearing parent to fit in.....but there is a place for hearing parents in the Deaf community....You guys are welcome! You're doing the right things.....And heck, if hearing parents don't feel like they fit in with the Deaf community, imagine how dhh as kids adults , who weren't exposed to sign or Deaf schools/ed feel in the hearing world. They don't fit in with the hearing world, and they were very often denied the Deaf world.......I actually think they are going to be VERY excited to see a parent like you starting to get involved.