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nikki476

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I am a hearing mother of a unilateral HOH daughter. We have no experience with any kind of hearing problems in our family until my daughter was diagnosed. I say that to explain how unprepared I am for this.

My peanut is 4.5 and just completed preschool. SHe is speech delayed (no one is surprised there huh? :roll:) and will most likely be taking another year before starting kindergarten.

I have read as many books and websites as possible to understand her needs and challenges and I can't believe how little I knew before! I really had no idea about the differences in hearing loss and the gadgets availble to help.

Really, this is where I am having trouble. Currently her school provides her with a FM system during class time. We have used it on field trips and it is GREAT!! I really want to get one for us to have at home also. I think it will really help out since she's basically relearning how to pronounce words and sounds. SHe also is very into things like iPods & game systems (Leapfrog) that we currently use headphones but maybe could just integrate into the sytem too (??)

The problem is the price! I asked the audiologist about it and they gave me a $2000 estimate. I thought that's crazy since the hearing aid was only $700!! But I'm having a hard time shopping around since most websites that "sell" the systems seem to just have specs and you order through your audiologist.

Do you have tips? Also, if you can tell me the difference/preference between this and a t-coil? I am literally lost here.

If it helps, she is unilateral, like I said, although the other side is testing very close to having loss as well. She is currently wearing an Oticon Safari.

Any help would be appreciated!!
 
Hi Nikki, There are specific challenges that come with being unilaterally deaf. I am bilaterally Deaf, as is my infant daughter. From my experience, some school districts allow the FM system to be taken home, others do not. Do you only have an IEP for your daughter or an IFSP for the family as well?
One thing that I would like to stress, even with the unilateral deafness, your daughter is not getting full access to sound. As you have said, she does have some speech delays. One thing that would make sure she has full access to communication is the use of Sign Language. She may have normal, or close to normal hearing on the one side, but ASL (if you are in the United States) is a wonderful addition to your daughters language development. Contrary to popular belief, the use of sign language does not delay spoken language acquisition, in many instances, it actually supports it. The children are more easily able to communicate, lowering their stress levels, and allowing them to learn better.
I do not know of a "cheap" FM system, but have you looked at getting a streamer for the aid(s). This would allow her to use her ipod easier as well.
Let me know if you have any questions.
 
nikki476 said:
I am a hearing mother of a unilateral HOH daughter. We have no experience with any kind of hearing problems in our family until my daughter was diagnosed. I say that to explain how unprepared I am for this.

My peanut is 4.5 and just completed preschool. SHe is speech delayed (no one is surprised there huh? :roll:) and will most likely be taking another year before starting kindergarten.

I have read as many books and websites as possible to understand her needs and challenges and I can't believe how little I knew before! I really had no idea about the differences in hearing loss and the gadgets availble to help.

Really, this is where I am having trouble. Currently her school provides her with a FM system during class time. We have used it on field trips and it is GREAT!! I really want to get one for us to have at home also. I think it will really help out since she's basically relearning how to pronounce words and sounds. SHe also is very into things like iPods & game systems (Leapfrog) that we currently use headphones but maybe could just integrate into the sytem too (??)

The problem is the price! I asked the audiologist about it and they gave me a $2000 estimate. I thought that's crazy since the hearing aid was only $700!! But I'm having a hard time shopping around since most websites that "sell" the systems seem to just have specs and you order through your audiologist.

Do you have tips? Also, if you can tell me the difference/preference between this and a t-coil? I am literally lost here.

If it helps, she is unilateral, like I said, although the other side is testing very close to having loss as well. She is currently wearing an Oticon Safari.

Any help would be appreciated!!
Click to expand...

I'm wearing an Oticon Safari right now and it's a great hearing aid!
what Nat said, a streamer is great and I use it alot sometimes :)
for me, I had spent $227 dollars on both of them when I got mine sophomore year
 
Is she speech delayed or spoken language delayed?
There's a diffrence. It's not TOO unusual for unilateral kids to have spoken language issues....if she's speech delayed, I would not panic all that much. Little kids are still learning to make sounds....even the hearing ones.
I also wouldn't go as far as buying your own FM. Seems kinda overkill.....If she has a hearing aid, and a normally hearing ear, she's all set. Are there any special needs or even dhh preschools in your area?
I do second Nat's suggestion to add ASL......especially since it looks like your kid's loss may be progressive. Then she'll have all the tools possible....and I mean even if her hearing in her other ear remains normal, she can still use 'terps and sign in difficult listening situtions.
 
You don't need to purchase an FM system...Especially if the school district has already purchased one for her use. No point in you expending money on that... Either convene an IEP meeting, or wait for the next one and have it written into her IEP.

Federal Law trumps state law, or SELPA policies... Your school district may resist, but you just need to be assertive, document everything, and follow through.

Our local SELPA had some goofy policy on students using supplementary aids outside of school and they initially told me no. After a period of time I was able to successfully get their policy changed and we take his FM home to use in extracurricular activities (when he wants to).




IDEA - Building The Legacy of IDEA 2004,

Regulations: Part 300 / A / 300.42
Sec. 300.42 Supplementary aids and services.
Supplementary aids and services means aids, services, and other supports that are provided in regular education classes, other education-related settings, and in extracurricular and nonacademic settings, to enable children with disabilities to be educated with nondisabled children to the maximum extent appropriate in accordance with Sec. Sec. 300.114 through 300.116.
 
Thanks CSign!!!!! I have never really understood the point of using an FM at home, for even bilateral kids. It is NOT a must have.
A dhh placement is a good idea.......actually maybe even have her evaluated by a teacher of the deaf or something like that. The fact that she has a spoken language delay may let her be placed in a dhh preschool. I know in at least three oral deaf schools, they also admit hearing kids who may need spoken language issues.
 
Thanks for all the info. I do not know of a DHH school around here, but I will definitely look into it. I guess I was considering buying the system because we are between school districts right now and I felt like the FM system we were using was not ours to borrow. I will look into it more for sure.

I have felt pretty lost when it comes to all this stuff but just browsing these forums has taught me so much!! I really appreciate all of you because otherwise, I wouldn't know where to begin to look for help.

As an example, after I posted this, I browsed around more and learned what a t-coil & neck loop are! She literally has had this aid for over a year and I just learned that tcoil is in there!! Why don't they have books or classes for uneducated parents?! I should write one maybe....once I get the hang of it :hmm:
 
I guess I was considering buying the system because we are between school districts right now and I felt like the FM system we were using was not ours to borrow. I will look into it more for sure.

I have felt pretty lost when it comes to all this stuff but just browsing these forums has taught me so much!! I really appreciate all of you because otherwise, I wouldn't know where to begin to look for help.

As an example, after I posted this, I browsed around more and learned what a t-coil & neck loop are! She literally has had this aid for over a year and I just learned that tcoil is in there!! Why don't they have books or classes for uneducated parents?!
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Again FM is NOT a must have. As long as she has a hearing aid in her HOH ear, she should benifit. Also, even in school, FM usage should be child centered. Have the kid go a couple of days with it, and then a couple of days without it, and ask the CHILD how they like it/ if they think it benifits them or not.
Some kids like it, others don't find it of benifit. I know that the FM has shrunk since I wore one (I was one of those kids with a GIANT body worn FM) but I quite frankly can't think of ANY sitution in the home where "absolute gotta must have the FM" Kids can and do benifit from hearing aids and captioning and things like that. But kids can ALSO compensate by visual means......you do know that a lot of HOH kids weren't identified until we were toddlers or even in kindergarten or first grade?!?!
Don't go overboard with the technology. Kids can learn to compensate and adapt in different ways.....most of the ALD and pricey eletronic gadgets and gizmos are targeted towards old people who absolutly cannot function without hearing.
I mean a lot of those ALDs are pricey and even kids with bilateral loss don't always use them.
 
I understand about the add-on technology being for older people (she is only 5 after all!) but since using the system in the classroom she has improved her speech dramatically. She has some educational delays because she missed out on learning basics for a couple of years and I am trying to do what is best to get her caught up. It's hard to explain her educational challenges, but trust me when I say she can be not just caught up to her age level, but maybe higher. She learns so fast it's amazing, but because we didn't realize her hearing was so bad (prior to receiving tubes she had almost no hearing at all) she is missing the fundamental skills to apply what she is learning.

Also, because of the unilateral hearing, she can hear very well, but not directionally and gets turned around/lost easily. I considered buying the system because of the vacations & activities we have planned for the summer which would likely include large crowds and lots of noise. I would not have used it in the home. SHe actually rarely wears the aid at home - I let her decide if she wants to or not - because she can hear well in situations with close conversation and little background noise.

I am realizing how little was explained to us from our audiologist and I e-mailed and called them to death so I am going in for a sit down Q&A next week to hopefully help me understand what exactly is best for her. But I really do appreciate all I have learned from all of you and I will definitely continue to stalk the message boards to learn more ;)
 
but since using the system in the classroom she has improved her speech dramatically. She has some educational delays because she missed out on learning basics for a couple of years and I am trying to do what is best to get her caught up. It's hard to explain her educational challenges, but trust me when I say she can be not just caught up to her age level, but maybe higher. She learns so fast it's amazing, but because we didn't realize her hearing was so bad (prior to receiving tubes she had almost no hearing at all) she is missing the fundamental skills to apply what she is learning.

Also, because of the unilateral hearing, she can hear very well, but not directionally and gets turned around/lost easily. I considered buying the system because of the vacations & activities we have planned for the summer which would likely include large crowds and lots of noise. I would not have used it in the home. SHe actually rarely wears the aid at home - I let her decide if she wants to or not - because she can hear well in situations with close conversation and little background noise.
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Yes, but are those educational delays due to being HOH? One thing I would do is maybe contact your state's School for the Deaf, and get a honest to god professional opinon on your daughter's functioning. She's missing the fundamental skills to apply what she is learning? Where did you get that? The pamphelt on How Important Early Intervention Is Otherwise Kids Will Not Be Able To Function As Hearing 100%?
Kids can and do adapt easily to not being able to hear. Being dhh DOES NOT cause cognitive delays or missing of "fundamental skills to apply what she is learning" You're looking at it from a hearing perspective... you're thinking " she's hearing impaired and missing out on stuff" You're not realizing that she can learn skills and ways to compensate for reduced hearing....capitilize on that, and she'll do AWESOME..... don't worry about the reduced hearing...Work on it as an additional skill, and give her alternative skills to compensate as well. Your daughter can suceed WITHOUT being 100% auditory.
 
nikki476 said:
I understand about the add-on technology being for older people (she is only 5 after all!) but since using the system in the classroom she has improved her speech dramatically. She has some educational delays because she missed out on learning basics for a couple of years and I am trying to do what is best to get her caught up. It's hard to explain her educational challenges, but trust me when I say she can be not just caught up to her age level, but maybe higher. She learns so fast it's amazing, but because we didn't realize her hearing was so bad (prior to receiving tubes she had almost no hearing at all) she is missing the fundamental skills to apply what she is learning.

Also, because of the unilateral hearing, she can hear very well, but not directionally and gets turned around/lost easily. I considered buying the system because of the vacations & activities we have planned for the summer which would likely include large crowds and lots of noise. I would not have used it in the home. SHe actually rarely wears the aid at home - I let her decide if she wants to or not - because she can hear well in situations with close conversation and little background noise.

I am realizing how little was explained to us from our audiologist and I e-mailed and called them to death so I am going in for a sit down Q&A next week to hopefully help me understand what exactly is best for her. But I really do appreciate all I have learned from all of you and I will definitely continue to stalk the message boards to learn more ;)
Click to expand...

I've known other children whose speech improved with the use of the FM system. She is not too young to use it... Unless you have a lot of disposable income, don't buy it. Get it written in her IEP that you guys can bring it home for use.

Unless she really doesn't want to wear it, I would also encourage you to have her wear the hearing aid at home too. That will also likely help her speech perception and production in the long run.
 
We had our IEP meeting this week and we were able to get access to the FM system over the summer thanks to the advice I was given from you! As with the aid, we plan to use it only when she is willing. I do not want to force anything on her at this age that might make her uncooperative.

I am looking into local deaf activities and we have a few things we will be attending over the summer including a family learning day next month for all of us. Unfortunately we live in a smaller urban area and we do not have a local deaf school. The nearest one is about 80 miles away so we are limited to functions over the summer but we are definitely going to be exposing her as much as possible to deaf culture.

@Deafdyke - I make the statement about her education not necessarily as a hearing person, but as her mother and the person who has sat down with several professionals for two years worth of IEP and ICEP testing. My daughter is a preschooler and I know she could catch up eventually but the struggle she has is because she lacks sequencing and repeating skills most kids learn from nursery rhymes and sing songs. I have a hard time addressing this without getting defensive (look out for the momma lion!) which is why I chose not to explain in the first place. I choose to give her every opportunity to excel including all forms of education and hearing technology. I was simply asking for personal opinions on the functions of different technology not necessarily to buy it immediately but to make an educated decision if the time comes.
 
And just in addition, if it's just speech issues (as opposed to language issues) I would not worry all that much. Speech issues are NOT that big of a deal. Even hearing kids have speech production issues.
 
deafdyke said:
And just in addition, if it's just speech issues (as opposed to language issues) I would not worry all that much. Speech issues are NOT that big of a deal. Even hearing kids have speech production issues.
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Right. But this child has a hearing loss. Big difference. I agree the OP shouldn't worry too much about it, but that doesn't mean this child shouldn't get the support she needs.
 
CSign said:
[/B]

Right. But this child has a hearing loss. Big difference. I agree the OP shouldn't worry too much about it, but that doesn't mean this child shouldn't get the support she needs.
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Yes, but is it speech or language that she has issues with? Most dhh kids will always have speech quality issues. And, indeed I do support unilateral kids getting the help they need. They have historically fallen through the cracks and been told " Oh they don't need accomdations or anything like that.
They can just wing it." But the thing is, unilateral dhh kids (except for multihandicapped) kids can and do respond well to the typical HOH accomondations. (meaning front row seating, hearing aid, and use of an FM device) They generally don't need hyperintense accomondations.
 
And Nikki, contact your state's Deaf Schools or regional dhh programs for evalutions/suggestions etc.
 
nikki476 said:
I am a hearing mother of a unilateral HOH daughter. We have no experience with any kind of hearing problems in our family until my daughter was diagnosed. I say that to explain how unprepared I am for this.

My peanut is 4.5 and just completed preschool. SHe is speech delayed (no one is surprised there huh? :roll:) and will most likely be taking another year before starting kindergarten.

I have read as many books and websites as possible to understand her needs and challenges and I can't believe how little I knew before! I really had no idea about the differences in hearing loss and the gadgets availble to help.

Really, this is where I am having trouble. Currently her school provides her with a FM system during class time. We have used it on field trips and it is GREAT!! I really want to get one for us to have at home also. I think it will really help out since she's basically relearning how to pronounce words and sounds. SHe also is very into things like iPods & game systems (Leapfrog) that we currently use headphones but maybe could just integrate into the sytem too (??)

The problem is the price! I asked the audiologist about it and they gave me a $2000 estimate. I thought that's crazy since the hearing aid was only $700!! But I'm having a hard time shopping around since most websites that "sell" the systems seem to just have specs and you order through your audiologist.

Do you have tips? Also, if you can tell me the difference/preference between this and a t-coil? I am literally lost here.

If it helps, she is unilateral, like I said, although the other side is testing very close to having loss as well. She is currently wearing an Oticon Safari.

Any help would be appreciated!!
Click to expand...

`I have purple hearing aids and they're Oticon . They have a red light that flash when the battery is going dead this is so the parents or teacher will know the child need to replace their battery. I wanted HA that was in a cool color and got some that are also kids friendly . My grandchild saw my HA flashing a red light and wanted to know why it was happening , I was able to put in a new battery before the other one dies. Cool!
 
whatdidyousay! said:
`I have purple hearing aids and they're Oticon . They have a red light that flash when the battery is going dead this is so the parents or teacher will know the child need to replace their battery. I wanted HA that was in a cool color and got some that are also kids friendly . My grandchild saw my HA flashing a red light and wanted to know why it was happening , I was able to put in a new battery before the other one dies. Cool!
Click to expand...

same with her but hers is in the SP platform and mine is in the P verison lol :)
 
nikki476 said:
We had our IEP meeting this week and we were able to get access to the FM system over the summer thanks to the advice I was given from you! As with the aid, we plan to use it only when she is willing. I do not want to force anything on her at this age that might make her uncooperative.

I am looking into local deaf activities and we have a few things we will be attending over the summer including a family learning day next month for all of us. Unfortunately we live in a smaller urban area and we do not have a local deaf school. The nearest one is about 80 miles away so we are limited to functions over the summer but we are definitely going to be exposing her as much as possible to deaf culture.

@Deafdyke - I make the statement about her education not necessarily as a hearing person, but as her mother and the person who has sat down with several professionals for two years worth of IEP and ICEP testing. My daughter is a preschooler and I know she could catch up eventually but the struggle she has is because she lacks sequencing and repeating skills most kids learn from nursery rhymes and sing songs. I have a hard time addressing this without getting defensive (look out for the momma lion!) which is why I chose not to explain in the first place. I choose to give her every opportunity to excel including all forms of education and hearing technology. I was simply asking for personal opinions on the functions of different technology not necessarily to buy it immediately but to make an educated decision if the time comes.
Click to expand...

Sorry, I read over this.....but that's AWESOME that you're going to try to expose her to ASL and Deaf culture. That will most likely play to her strengh of visual processing. That sucks that the deaf school is kinda far away. However, could you take her there for an evalution? It's OK to be worried....but I think if you had your daughter evaluated by someone who is familiar with Deaf Ed, you would feel a lot better.....They could give you much more helpful suggestions then we can....and they could give you much more helpful suggestions then a generic IEP team! Heck, they might even be able to give you tips on how to improve her skills!
 
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