Newly Deafened Kindergartener: Need Help w/Proper Services...

[MomToDeafChild]

Hi. I am the mom to a Kindergartener who has had a cochlear implant for the last 5.5 years. She is completely oral and knows minimal sign. In early February she came down with an ear infection, and right along with it she lost her CI hearing. Apparently this is very rare since according to the implant center she is only the 3rd known case, and they called all across the country. They think the auditory nerve was damaged/destroyed by toxic bacteria. Right now we are in limbo, waiting to see if her auditory nerve bounces back, but I don't believe the doctors hold out much hope. We may possibly be looking at reimplantation and/or implanting her other ear, but they aren't very optimistic about that either.

Meanwhile, she has had no hearing for 3 weeks and has to rely on lipreading while we rush to learn sign. She is currently in a mainstream class and her IEP goals are all auditory, so right now it is useless. We are exploring other options for her in case her hearing is gone for good. In our area, there are no deaf schools and the closest one is 2 hrs away, so that is not an option. There is a total communication class in our IU in a school about 35 min away, so that is looking like the most likely placement. It is comprised of 7-9 students from grades K-3 with one teacher and one aide.

Right now, the mainstream K program is 2.5 hrs/day and she has an aide to herself for 1 hr. This aide is there to help her follow instructions that she can't read off of the teacher's lips, and to try to help her follow along. Prior to all this happening, she had no in class services, and was only pulled out a couple times a week for speech and with the TOD. Neither the teacher nor the aide have any experience with deaf children. She is missing out on a lot of language, and will not be able to keep this up for the long term without falling behind. She is already struggling.

My question is this: If we decide to put her in the TC class to finish out this year, is it unreasonable for me to ask for a full time aide for her? Someone who can help her by signing everything and helps her understand what the signs are (so she becomes familar with sign), in addition to reiterating vocally what the teacher is saying for aid to lipreading? I look at it this way: She doesn't know sign so will be jumping into a class where everyone else does, and will have to play catch up on a foreign language, in addition to keeping up with the class on academics. Plus, while she can lipread, she is only in K, and is by no means an expert at that, so misses a lot that way. I really think she is going to need one on one. All of the other kids in the class already know sign, so she would actually have to be taught while trying to follow along.

Does anyone else have a full time aide for their child? I would love to hear everyone's experiences, and what the aide did.

TIA for the advice!

 

[shel90]

I won't be critical but this kind of situation is why I have strong opinions on why all deaf children should be learning ASL along with spokenm English to ensure they get full access to language. Never know if the CI will failbut at least the child will have language through ASL.

No, it is not unreasonable to demand a full time aide because your child is at a critical time in her life for language development and she has lost her hearing from the CI so any kind of service to ensure she doesn't get any more delayed in language is very important. If the school says no, keep on fighting as it is your and your daughter's right.

As for picking up on sign language, if around it all day, your daughter will pick up on it quickly since she is young. For u and the rest of the family, it may take longer but hang in there as it is normal for adults to take some time to learn another language. Learning even the basics is a lot better than nothing. I know parents of some of the students at my school whose parents refuse to learn ASL..not even the basics so they r unable to help their child with their homework nor communicate with them because they are so dead set on their children developing speech and lipreading skills even though their child is a lot older. That hurts the children cuz the children have to accodomate to their parents' communication needs which is difficult for the children. Some do manage just fine but it just would be nice if the parents cud learn at least the basics. U seem to be willing to learn so u seem to be on the right track with this understanding of your child's needs.

I think the most important thing now is to get whatever service u can get to ensure your child has 100% access to language. In that case, it would have to be ASl but do continue with the speech therapy classes to ensure that she maintains her oral skills.

Good luck with everything! U can read the threads under "Our World, Our Culture; Deaf Education, and Sign Language and Oralism." There r a lot of valuable information in those threads.

BTW..welcome to AD!

 

[jillio]

I won't be critical but this kind of situation is why I have strong opinions on why all deaf children should be learning ASL along with spokenm English to ensure they get full access to language. Never know if the CI will failbut at least the child will have language through ASL.

No, it is not unreasonable to demand a full time aide because your child is at a critical time in her life for language development and she has lost her hearing from the CI so any kind of service to ensure she doesn't get any more delayed in language is very important. If the school says no, keep on fighting as it is your and your daughter's right.

As for picking up on sign language, if around it all day, your daughter will pick up on it quickly since she is young. For u and the rest of the family, it may take longer but hang in there as it is normal for adults to take some time to learn another language. Learning even the basics is a lot better than nothing. I know parents of some of the students at my school whose parents refuse to learn ASL..not even the basics so they r unable to help their child with their homework nor communicate with them because they are so dead set on their children developing speech and lipreading skills even though their child is a lot older. That hurts the children cuz the children have to accodomate to their parents' communication needs which is difficult for the children. Some do manage just fine but it just would be nice if the parents cud learn at least the basics. U seem to be willing to learn so u seem to be on the right track with this understanding of your child's needs.

I think the most important thing now is to get whatever service u can get to ensure your child has 100% access to language. In that case, it would have to be ASl but do continue with the speech therapy classes to ensure that she maintains her oral skills.

Good luck with everything! U can read the threads under "Our World, Our Culture; Deaf Education, and Sign Language and Oralism." There r a lot of valuable information in those threads.

BTW..welcome to AD!

I don't mean to be critical either, as I understand that this is a very tough time for this child and family. But once agian, this is a case of not realizing that a deaf child with a CI is still a deaf child. This offers support for all the many times that you, shel, and I have both said that CI is a wonderful tool, but it does not address all of the language issues of a deaf child.

But it is not too late. She is only 5, and while she have passed the optimal period for aquiring sign as a native language, she is still well within the critical period for aquisition of a second language to fluency.

Good luck to you and your daughter.

 

[deafdyke]

If we decide to put her in the TC class to finish out this year, is it unreasonable for me to ask for a full time aide for her? Someone who can help her by signing everything and helps her understand what the signs are (so she becomes familar with sign), in addition to reiterating vocally what the teacher is saying for aid to lipreading? I look at it this way: She doesn't know sign so will be jumping into a class where everyone else does, and will have to play catch up on a foreign language, in addition to keeping up with the class on academics.

That's not unreasonable at ALL. It's really too bad you're so far away from a Deaf school. Which one is it? I know Western Pennsylvania School for the Deaf is supposed to be really good. Maybe that could be an option for her, later on.
Jillo and shel,while I agree with you in theory, it does sound like this family, didn't outrightly reject Sign, but rather figured that their daughter didn't need it b/c she was doing so well orally.
I'd definitly put her in the TC class. She'll be able to learn another language. She's struggling already.....she does need Sign. Think about it this way......she'll be able to learn via a visual medium.....which tends to be a strengh for dhh kids. She won't have to struggle as hard to remember how to pronounce things and things like that. She'll do better at learning ASL, since she's got a foundation in English.....and little kids can just soak up information and things like that just like that!

Some more advice........be excited about having her learn Sign. Kids can pick up from their parents about how their parents feel about various and sundry things. If you're not excited, your kid will pick up on that, and not be excited or may be resistant to learning Sign.
Contact the Pennsylvania Association for the Deaf. Some branches of NAD offer a program where Deaf adults come to your house to mentor to your family.
Join the American Society for Deaf Children: American Society for Deaf Children
and join their listserv: Parent-deaf-hh......Archives of PARENTDEAF-HH@LISTSERV.KENT.EDU
Definitly throw the whole toolbox at your daughter..........see which tools she likes and doesn't like.

 

[jillio]

That's not unreasonable at ALL. It's really too bad you're so far away from a Deaf school. Which one is it? I know Western Pennsylvania School for the Deaf is supposed to be really good. Maybe that could be an option for her, later on.
Jillo and shel,while I agree with you in theory, it does sound like this family, didn't outrightly reject Sign, but rather figured that their daughter didn't need it b/c she was doing so well orally.
I'd definitly put her in the TC class. She'll be able to learn another language. She's struggling already.....she does need Sign. Think about it this way......she'll be able to learn via a visual medium.....which tends to be a strengh for dhh kids. She won't have to struggle as hard to remember how to pronounce things and things like that. She'll do better at learning ASL, since she's got a foundation in English.....and little kids can just soak up information and things like that just like that!

Some more advice........be excited about having her learn Sign. Kids can pick up from their parents about how their parents feel about various and sundry things. If you're not excited, your kid will pick up on that, and not be excited or may be resistant to learning Sign.
Contact the Pennsylvania Association for the Deaf. Some branches of NAD offer a program where Deaf adults come to your house to mentor to your family.
Join the American Society for Deaf Children: American Society for Deaf Children
and join their listserv: Parent-deaf-hh......Archives of PARENTDEAF-HH@LISTSERV.KENT.EDU
Definitly throw the whole toolbox at your daughter..........see which tools she likes and doesn't like.

Agree with your advise to this family. I didn't mean to imply that the family had actually rejected sign, but of the experts that lead parents of deaf children to believe that as long as they appear to be doing well orally, there is no need for visual methods in communication. I think we both agree, dd, that is is often the experts that mislead the parents rather than the parents rejection of manual communication that creates the problem. Parents rely on what they are told, as assume that because an individual is a prefessional, the recommendations they give are valid. You and I also agree that oral success does not mean that a deaf child will not benefit from sign, and particularly so in an educational setting. Agreed that TC would be the way to go with this particular child, as she already has a grasp of oral auditiory language.

 

[Deborah]

First of all, HUGS to you and your daughter--I am the mother of an almost 13 year old daughter who is "oral deaf"--never know how to "label" it--hearing aids work very well for her so CI has never been an option for us--she hears and speaks well but now wants to learn ASL and go to a deaf school for social reasons. I always wonder what it would be like if, for some reason, my daughter lost more hearing--she LOVES her hearing aids and hates to not be able to hear (when swimming, for example), so I imagine she would want to try a CI--BUT, she also wants to learn ASL and get to know the "Deaf community." But apparently there are instances such as your daughter's where CI won't work--maybe implanting the other ear is a option in the future, but I know you need to get help for her immediately.

As a mother, and imagining how my daughter would be if she suddenly lost more hearing, my heart goes out to you--she must be frustrated and not fully understanding what is going on. Just hug her and give her a lot of love, and then work on communicating however you can with her. If she can lipread you for now, hopefully that wil help you keep a connection with her and help her through this--it MUST be much more difficult to LOSE hearing than to simply be born without it. I know kindergarteners are just learning to write letters and simple words, but maybe this could also be another tool--you just need to help her adjust to the sudden loss before moving on to what's next. I am sure you need some big hugs right now--hope you can feel them through the internet!

Once everyone has reached the acceptance stage--truly grasping that she is once again deaf--must be as tough, or tougher, than the day she was first diagnosed--THEN you will be ready to decide "what's next." If CIs or hearing aids won't work with her, then she will need to learn how to fully communicate without any hearing. If she begins ASL now, I am sure she will do fine, and you will learn, too--and don't feel guilty about not knowing it earlier because, essentially, your daughter just recently became deaf. It isn't a lot different than a child born hearing that becomes deaf at age 5--both your daughter and the child who was born hearing learned to listen and speak--both would need to find other ways to communicate if they became deaf at age 5--both would have the confusion of being able to speak but not being able to hear themselves and others. MAYBE she has enough oral skills to stay oral only, but it sure would be tough if she is not hearing at all through hearing aids or CIS--some people do it, but that must be the toughest way to go. And I wil say this--as she matures, she will want to have friends "like her"--that is what my very oral daughter who hears well with hearing aids is now going through--being isolated in the mainstream and being the "only deaf girl" is a lonely road.

So nurse your precious baby girl back to health and focus on her well-being, then move on to the educational decisions. As I look back on the pictures of my daughter in kindergarten, I cannot believe how fast the time passed! i think, as she grew older and became more aware of her deafness and how she was different from the other kids, she became more and more lonely in hte mainstream. K-2 went fairly well, 3-5 became lonelier every year. Now she is in middle school and is miserable being alone--she will probably be going to a deaf school for the rest of middle school and for high school. We chose very carefuly to find one that is accepting of "oral deaf" who are learning ASL--I think she will be very happy FINALLY having deaf friends who speak AND sign! If your daughter can develop both, it will be a huge advantage in the long run. I don't think we have to choose one--I think it is good to have both--I have now changed from an "oral only advocate" to a "TC advocate"--deafness encompasses many things, and many ways to communicate should be included, too.

 

[shel90]

I have to agree with Deborah. I was mainstreamed orally as the only deaf child. Like her daughter, K through 5th grade were fine as far socially goes but by the time I reached middle school, everything changed. Socializing through playing had changed from socializing through chattering so that was where my deafness had a big impact. I struggled to fit in cuz I couldnt keep up with everyone's conversations and I was always misunderstanding my friends so eventually those same friends that I played hide and seek, jump rope and other activities as a child with lost interest in me cuz they werent willing to work hard in making sure I understood what everyone was saying or repeat themselves constantly. I cant blame them cuz of course we were all typical 11 to 13 year old kids so I dont expect them to really get it when I didnt really "get it" myself. Not only that, I had to put up with kids picking on me for being deaf so I was very alone and very depressed. I cant remember if I expressed wanting to go to the deaf school to my mom or not but I do remember hating myself and my deafness and I tried so hard to be like my hearing peers. I refused to put my hair up cuz I didnt want people to see my hearing aids due to my shame.

High school came and things got better cuz my best friend who is deaf from another school finally attended the same school as I did. It wasnt so perfect and I still had a lot of struggles and I started to doubt myself a lot. I was at the point where I didnt have any of my own opinions or thoughts. I waited until my hearing friends expressed their opinions and followed what they said. That led to situations where I was taken advantage of cuz I wanted to be accepted and liked so much. I wont go into details to what happened.

That is why I dont believe in mainstreaming deaf children with only hearing children. If the deaf schools are not an option due to distance or whatever, try mainstreaming programs where there are other deaf students too. I know it is hard especially in the rural areas. If for some reason, your daughter is mainstreamed as the only deaf child, important keep those issues in mind as she gets older especially if she comes home crying about feeling left out or not having friends. My mom blew it off as a typical teenager stage but looking back, there were more serious issues that I was going through that my mom refused to see.

I had to go to therapy for a long time in my late 20s after going through so much anger after I found about deaf culture and learning ASL and how freeing ASL was for me. I had to learn how to let go of my bitterness about my upbringing and learn to accept my deafness and my limitations and lead a happy life. Thankfully, I am at the point where I am content with myself and not ashamed of my deafness. Growing up like that wasnt easy so that's why whenever I read about oral only programs, my stomach tightens up due to my bad experience.

 

[jillio]

I have to agree with Deborah. I was mainstreamed orally as the only deaf child. Like her daughter, K through 5th grade were fine as far socially goes but by the time I reached middle school, everything changed. Socializing through playing had changed from socializing through chattering so that was where my deafness had a big impact. I struggled to fit in cuz I couldnt keep up with everyone's conversations and I was always misunderstanding my friends so eventually those same friends that I played hide and seek, jump rope and other activities as a child with lost interest in me cuz they werent willing to work hard in making sure I understood what everyone was saying or repeat themselves constantly. I cant blame them cuz of course we were all typical 11 to 13 year old kids so I dont expect them to really get it when I didnt really "get it" myself. Not only that, I had to put up with kids picking on me for being deaf so I was very alone and very depressed. I cant remember if I expressed wanting to go to the deaf school to my mom or not but I do remember hating myself and my deafness and I tried so hard to be like my hearing peers. I refused to put my hair up cuz I didnt want people to see my hearing aids due to my shame.

High school came and things got better cuz my best friend who is deaf from another school finally attended the same school as I did. It wasnt so perfect and I still had a lot of struggles and I started to doubt myself a lot. I was at the point where I didnt have any of my own opinions or thoughts. I waited until my hearing friends expressed their opinions and followed what they said. That led to situations where I was taken advantage of cuz I wanted to be accepted and liked so much. I wont go into details to what happened.

That is why I dont believe in mainstreaming deaf children with only hearing children. If the deaf schools are not an option due to distance or whatever, try mainstreaming programs where there are other deaf students too. I know it is hard especially in the rural areas. If for some reason, your daughter is mainstreamed as the only deaf child, important keep those issues in mind as she gets older especially if she comes home crying about feeling left out or not having friends. My mom blew it off as a typical teenager stage but looking back, there were more serious issues that I was going through that my mom refused to see.

I had to go to therapy for a long time in my late 20s after going through so much anger after I found about deaf culture and learning ASL and how freeing ASL was for me. I had to learn how to let go of my bitterness about my upbringing and learn to accept my deafness and my limitations and lead a happy life. Thankfully, I am at the point where I am content with myself and not ashamed of my deafness. Growing up like that wasnt easy so that's why whenever I read about oral only programs, my stomach tightens up due to my bad experience.

Thank you for contintuing to bring up issues such as socialization during the school years. It is extremely improtant for parents of deaf children to understand that there is so much more involved in the education of deaf children that their ABCs and 123s.

 

[deafdyke]

as socialization during the school years. It is extremely improtant for parents of deaf children to understand that there is so much more involved in the education of deaf children that their ABCs and 123s.

Exactly!
Socialization is ALSO very important. Like a lot of not virtually ALL "oral" only kids have significent social issues, b/c they don't really have the skills nessary to use spoken language, pragmaticly. Fitting in and socialization can really really affect academic performance. Just wish more hearing parents understood that.

 

[BearBeauty]

Hmm... this thread is making me look back on my school years LOL..

I grew up Orally with Minimal sign until I was 14. While socialization was an issue for me, I learned to overcome it and I can communicate between deaf and hearing with no problems... Except for that thing some of my ex-friends that are deaf had about using me as an interpreter...*grumbles*

 

[shel90]

Hmm... this thread is making me look back on my school years LOL..

I grew up Orally with Minimal sign until I was 14. While socialization was an issue for me, I learned to overcome it and I can communicate between deaf and hearing with no problems... Except for that thing some of my ex-friends that are deaf had about using me as an interpreter...*grumbles*

U went to school with other deaf children right? At least u had that. I was the only one deaf at my school until high school.

 

[BearBeauty]

I was usually the only deaf... sometimes had other deaf kids around.

I was talking after high school that I learned to overcome the socialization problem.