HOH Teens

February 27, 2001

Hi!

i joined this list just a short time ago. I am finding that it does not meet

my needs with my teen daughter who is hearing impaired. Does anyone know of a

list that is for parents of teens who are hard of hearing?? My needs and

frustrations are so different that those of a parent of younger children.

Thanks,

Suki

February 28, 2001

In a message dated 2/28/01 8:26:07 AM Eastern Standard Time,

Lineberry@... writes:

> Talk to me...My son is a teen also. I would love to hear some of the

> concerns and positives experiences you are living with. We can compare

> notes, and maybe get others to join with kids in our age group as they see

> the postings.

>

> Janet

>

Hi Janet,

is a young teen, will be 14 in April. So many things are going to

be coming up with her that haven't already come up! She just starting

wearing her hearing aids, part of the time, anyways. She is so self conscious

about them. A lot of the issues I have with her are social ones. She missed

out on so many social cues growing up because we were not aware of the impact

even a small hearing loss would have. Her hearing has gone done

considerably since first being diagnosed with a mild hearing loss. How do I

" teach " her how to pick up on social cues?? She now has a " special " friend

who invited her to a valentine's dance and sent her a candy gram and bought

her a carnation. I want to be able to help her with what she missed out on

naturally and I am a loss as how to do it. How do I get a teen to accept

that their hearing is less than the kids they are in school with and even

more so, less than a sibling?? Sometimes I think it would have been better

if way back when, her hearing loss had been more than a mild one. i want to

make sure that my child has her teen years fullfilled as well as getting the

right education (and that is being taken care of). Steph misses out on so

much because of how sensitive her ears are to excessive noise, not just loud

noises. She doesn't like being in a room with noisy kids and living in a

family oriented apartment complex, we have a community center that plans a

lot of activities for the kids. Sometimes she takes her hearing aid off, but

then she can't hear everything, And if she wears the hearing aid she gets

headaches and earaches from the noise. I realize that this is a problem for

all mop-hearing kids, but it seems to be worse now that she is a teen.

I am a hearing person, I do not know how to prepare my teen for the life she

will be dealing with as high school approaches. She is the only non-hearing

student in her school. I think there are 2 others in one of the other junior

highs that we have here. She is not in contact with non-hearing people

because we do not know any.

have I rambled enough??? My thoughts are all mixed up right now!!

suki

February 28, 2001

In a message dated 2/28/01 11:11:55 AM Eastern Standard Time,

Kerri_Hicks@... writes:

> Suki, what kind of hearing aids does she have? There are excellent hearing

> aids that can help a lot with background-noise issues. (I've found the dual

> mic technology to be nothing short of miraculous.) Also, FM systems help

> (as you likely already know). Your daughter is of the age where she can

> carry her own FM transmitter, and if she wants to have a one-on-one

> conversation with someone in a noisy environment, she could give them the

> cool mic to wear/talk into.

>

is on Medicaid because she is on SSI. So we get the bottom of the

line in hearing aids!!!! Her primary insurance is thru her father and it

does not pay for hearing aids!!! The FM transmitter sounds like it would be

optional for her. I need to find funding to get any other type of hearing

aid.

As far as knowing or meeting any other kids who wear hearing aids, No she

doesn't know anyone. she is the only one in her school that wears them and

when she was in elementary school there was only one other student who was

non-hearing and she went to another school!!! Finding her peer support has

been hard also. I have no idea where to turn to do this. We do have case

manager from the Commission for the Deaf and Hard of Hearing. She hasn't

mentioned a way to get her in with other non hearing kids. I must be in a

city where there aren't many or any non hearing kids!!! Especially teens!

suki

February 28, 2001

Suki,

Have you posted questions specifically about teens? There are many of us

represented on the list and we are all in different places. Some just had

children diagnosed, some have children grown and gone and everything in between.

There are people with teenagers and some who have passed through the teen years

who could maybe help give you what you need.

Barb

Hi!

i joined this list just a short time ago. I am finding that it does not meet

my needs with my teen daughter who is hearing impaired. Does anyone know of a

list that is for parents of teens who are hard of hearing?? My needs and

frustrations are so different that those of a parent of younger children.

February 28, 2001

Suki,

Talk to me...My son is a teen also. I would love to hear some of the concerns

and positives experiences you are living with. We can compare notes, and maybe

get others to join with kids in our age group as they see the postings.

Janet

February 28, 2001

At 10:51 AM 2/28/01 -0500, you wrote:

>Steph misses out on so

>much because of how sensitive her ears are to excessive noise, not just loud

>noises. She doesn't like being in a room with noisy kids and living in a

>family oriented apartment complex, we have a community center that plans a

>lot of activities for the kids. Sometimes she takes her hearing aid off, but

>then she can't hear everything, And if she wears the hearing aid she gets

>headaches and earaches from the noise. I realize that this is a problem for

>all mop-hearing kids, but it seems to be worse now that she is a teen.

Suki, what kind of hearing aids does she have? There are excellent hearing

aids that can help a lot with background-noise issues. (I've found the dual

mic technology to be nothing short of miraculous.) Also, FM systems help

(as you likely already know). Your daughter is of the age where she can

carry her own FM transmitter, and if she wants to have a one-on-one

conversation with someone in a noisy environment, she could give them the

cool mic to wear/talk into.

You're right to take all things into consideration...even/especially social

issues for a teenager. Has met other teens with hearing aids?

That might also be a means to help her accept them, and to learn strategies

to use the hearing that she has.

Good luck!

February 28, 2001

Ski,

Wow, do we walk in the same shoes. My daughter is also 14, same

issues, same concerns. Do you happen to be from Oregon??

February 28, 2001

If you find such a place, will you come back and tell us? My daughter is 10,

and I foresee problems of a different nature. Maybe if you put out those

issues as discussion items, we who have younger kids can begin to plan.

We're facing middle school next year and I am terrified. She's been in a

special day class with very minimal mainstreaming so far, and what she has

had has been lousy. Even though she's in 5th grade, they haven't done " the

talk " yet, and her teacher is a man, so I am not sure how it will work. I'm

a nurse and I may have to go in and do it myself, for her and her

classmates.

Judith Longman

HOH Teens

Hi!

i joined this list just a short time ago. I am finding that it does not

meet

my needs with my teen daughter who is hearing impaired. Does anyone know

of a

list that is for parents of teens who are hard of hearing?? My needs and

frustrations are so different that those of a parent of younger children.

Thanks,

Suki

February 28, 2001

Here are a few ideas I had. As with all free advice, it's worth what you pay

for it.

There are summer camps for deaf and HOH of kids, all over the country. Most

of them have good scholarship programs, so it shouldn't cost you much out of

pocket - except the sleeping bag, lost socks, extra stuff that never comes

home lol. In the forum connected to the Fuzzy Ears Advocacy website

http://fuzzyears.homestead.com/index.html there is a folder with postings

about different camps. This is the perfect time of year to be looking into

camp.

Help with the cost of hearing aids is possible - if the school won't help

with the FM, try to get that from these sources, also. The most

comprehensive list of those is on Kay's website, and I know she's going to

post the link for you to find it.

I think that reading books is a good way to help cope with an uncomfortable

situation. Also, going to conferences, where there are other families with

deaf kids (A. G. Bell, ASDC, Impact for those of us in California) and deaf

cultural events where there are lots of people of varying stages of deafness

and coping. I think that SHHH may have some youth activities or chapters.

Judith Longman

February 28, 2001

> Suki,

>

> Talk to me...My son is a teen also.

Ditto also! I think that for most of us on the list with teens, we spend a lot

of time

answering the questions of those with younger children. Our most recent problem

involves

the headgear for his braces going over his cochlear implant site, as well as the

usual

teen attitude that can surface from time to time.

I have to admit, I am pretty proud of JD. Last week I was speaking with the

mother of

another student with a CI at his mainstream school. She mentioned that one day

her

daughter told her that she didn't have any friends, and how much that surprised

her

because her daughter is so outgoing and seems so happy at school. After I got

home, and JD

and I were chatting about school and that it was this other student's birthday

the next

day, I told JD what the other mother had said. JD said, " that's ridiculous - all

of us

Sunshine Kids (kids mainstreamed through Sunshine Cottage) are her friends. " I

asked JD if

he felt like he had any friends, and he said yes and started naming some names.

I then

asked if he ate lunch with them, or if he ate lunch alone. He said he ate lunch

alone. A

couple of days later, when I asked JD how lunch was he said he had noticed this

other

student I mentioned was eating lunch alone too, so he went and asked her if he

could sit

with her to eat his lunch. He said they had a nice lunch together. JD's always

had a

gigantic heart as far as the feelings of others is concerned, but this simple

act of

kindness impressed me.

Hugs,

Kay

February 28, 2001

In a message dated 2/28/01 1:31:19 PM Eastern Standard Time, jlongman@...

writes:

> There are summer camps for deaf and HOH of kids, all over the country. Most

> of them have good scholarship programs, so it shouldn't cost you much out of

> pocket - except the sleeping bag, lost socks, extra stuff that never comes

> home lol. In the forum connected to the Fuzzy Ears Advocacy website

> http://fuzzyears.homestead.com/index.html there is a folder with postings

> about different camps. This is the perfect time of year to be looking into

> camp.

>

This sounds like a good idea!! We do have a HandiKids camp two towns over, it

runs two week sesssions, and they give financial aide, but have to provide

own transport. Because of glaucoma probs I do not drive.

For a going away camp I would definitely look for one with excellent medical

help cuz of Steph's heart. she would love to go to camp!!!

I will check out all these links!!! i want to thank you all so much!!

Suki

February 28, 2001

In a message dated 2/28/01 1:35:45 PM Eastern Standard Time,

listenup@... writes:

> when I asked JD how lunch was he said he had noticed this other

> student I mentioned was eating lunch alone too, so he went and asked her if

> he could sit

> with her to eat his lunch. He said they had a nice lunch together. JD's

> always had a

> gigantic heart as far as the feelings of others is concerned, but this

> simple act of

> kindness impressed me.

>

> Hugs,

> Kay

>

What a sensitive young man!!! I wish that there were other hearing impaired

and deaf kids for Steph to get to know. She refuses to learn sign language

because no other kids at school would know it! She is truly alone in this as

far as peers that are just like her. I can't believe that in a city with

almost 30 elementary schools, 4 junior highs and a high school with 4000

students, that there aren't more non-hearing kids.

Judith did send me some links to check out. And I will!!

suki

February 28, 2001

In a message dated 2/28/01 3:19:14 PM Eastern Standard Time,

gprogers@... writes:

> For example, right now there is an extended discussion on busing. Sometimes

> it's on identification or someone who just had a child diagnosed.

> Sometimes on IEP suggestions or questions.

>

yeah, I have been following that and can't believe that school districts and

states are so far apart on special education all together!!! Steph does have

a van this year. In elementary school grades 1 - 3 I walked her to school

cuz the school was on the other side of our woods. In grades 4 - 6 she was

bused on a " big yellow " bus because I switched schools to get her out of Pod

classrooms. the first year of junior high I took her by public bus, because i

was told that no spec ed vans go to that junior high because there were no

spec ed students there! Who Steph was, I still don't know!!! This year she

started out at that same junior high, and with a van! And then in October she

was transferred to another junior high into a language based spec ed

classroom being mainstreamed for non academics. I have had my " fights' with

the school department in the past, but not if it was related to her hearing!!

That they gave me no battle on!!

suki

February 28, 2001

In a message dated 2/28/01 3:40:01 PM Eastern Standard Time,

gprogers@... writes:

> Ask your case manager if there are activities for the deaf and hard of

> hearing. Even if you can't find anyone her age exposure to others,

> especially sucessful deaf adults can be valuable.

>

> Barb

>

I had checked with the Federation for Children with Special Needs and the

only places that have any type of activities are places that the buses do not

go to !! They are all north of boston or not in range of time limitations.

Due to galucoma probs I do not drive and am stuck in my little city!!!!

suki

February 28, 2001

In a message dated 2/28/01 3:42:27 PM Eastern Standard Time,

gprogers@... writes:

> We just got an FM system through our contact at the Virginia Department for

> the deaf and hard of hearing. If she were older there were other state

> programs that could help her because apparently, in Virginia, it's more

> important to be properly amplified in the job place than it is in school.

> I would ask your case worker about programs availble for transistion

> services.

>

> Barb

>

The school department supplied an FM system to be used during school but it

didn't work out!! The teachers wouldn't let Steph use it in the way it was

comfortable for her. So Steph gave it back. Now that she is in a class with

no more than 10 students, she is not having the same problems that she needed

the FM system for last year. I would like to get info on the personal fm

system, tho that can be used at home. She would have fun with that!!!

suki

February 28, 2001

In a message dated 2/28/01 3:59:06 PM Eastern Standard Time,

dfpotter@... writes:

> Where in Mass. are you? We are considering a move from RI to the Lexington

> area because we cannot afford the private schools here and the public school

> options in our city are abysmal (and my husband works in Lexington)

>

Hi!

i am about 20 miles south of Boston in Brockton. When Steph was in

elementary school there was a social skills class, but even the school

adjustment counselor said it was doing Steph no good because the kids in it

were behavior problems. Steph social problems stemmed from a disability. we

did try to get social skills into this last IEP, but put it aside because we

felt it was more important getting her a classroom placement that would

benefit her academically. There is another IEP meeting as soon as I get the

report from the IEE that we finished in January. Our last IEP meeting was in

September of this school year.

Suki

February 28, 2001

Suki,

I apologize if I sounded abrupt this morning, I was in a hurry.

What I mean to say is that topics tend to follow whatever needs the participants

have at any point in time. For example, right now there is an extended

discussion on busing. Sometimes it's on identification or someone who just had

a child diagnosed. Sometimes on IEP suggestions or questions.

So feel free to bring up any topic and I am sure there is someone here who can

help with it. I am glad you brought up HoH teens. It won't be long before we

are there. My daughter is 11 and I can use all the insight I can get.

There were four or five of us that first got together here (actually it was

another list and Listen-up sort of grew out of that one) a few years ago when

our children were five and six. My daughter is now 11, can that many years

really have gone by? Thanks to all of you for the support and we continue to

learn and support each other through this forum.

Barb

February 28, 2001

In a message dated 2/28/01 4:08:35 PM Eastern Standard Time,

dfpotter@... writes:

> I know our audiologist at Boston

> Children's Hospital, Marilyn Neault, knows lots of folks and is often

> willing to help with the legwork to connect families. I've met a few

> families through her!

>

> -Daphne

>

We have to audiologists one here one at New England Medical Center. We had

her IEE done at the Boston Center for Deaf and Hard of Hearing Children at

Children's Hospital in Boston. Her cardiologists are also at Childrens!!!

I will call both audiologists that we have and ask if they know of anything I

can do. Also Steph is due a yearly physical in April so will also talk to one

of the pediatricians about some groups.

Thanks so much for the good ideas!!!

Suki

February 28, 2001

In a message dated 2/28/01 4:53:27 PM Eastern Standard Time,

CNe1004559@... writes:

> Ski,

> Wow, do we walk in the same shoes. My daughter is also 14, same

> issues, same concerns. Do you happen to be from Oregon??

>

No unfortunately I am from Mass!!! I wish I was from Oregon!!!

Suki

February 28, 2001

In a message dated 2/28/01 5:18:30 PM Eastern Standard Time,

Lineberry@... writes:

> Suki (and others) have brought up what is a commonality among many Hard of

> Hearing kids. (Deaf kids too, but hold that for a moment) It is an issue

> of identity. Many times I have heard from parents that they would have

> preferred their child to be " totally " deaf so that they knew where they

> would fit. HH kids struggle to find a place in both communities. They can

> get enough to " pass " within the hearing community,but miss enough to

> question themselves and their abilities.

>

Thank you!!! The issue of identity is a big issue with Steph!!!!!! She does

not know where she belongs!!! She is left out of so many things and not all

related to her hearing problems. She has no idea of who she is other than a

" tomboy " . But that is Steph! I am going to get our case worker really active

in helping getting something going for Steph!! The good thing is she even

lives in the city we live in!!!! So if there is something out there that I

haven't heard about, she should have knowledge of it!!!

suki

February 28, 2001