Re: new to group, plus my other, non-HOH child

[Guest guest]

In a message dated 1/2/2004 7:04:41 AM Eastern Standard Time,

marcjen123@... writes:

> I don't know how everyone else manages to keep up and keep there sanity.

> We have 2 speech therapy sessions, 1 session with an aural therapist and

> another session with an ASL instructor every week. Then we have trips to

Boston

> Children's for all of the hearing testing. I also have a 3yr old daughter

> that goes to pre-school and has to be the center of everyones attention,

> understandably. On top of our family needs my husband and I work full time

jobs.

> There is not enough hours in the day!!!!!!

> Hopefully this will slow down when Isaac is able to let us know what he

> likes and doesn't like, and what is more beneficial to his learning.

>

Welcome to the group -- and vent away. Everyone needs to do that! Your note

made me smile. I know that feeling of not having enough hours in the day, the

feeling that I spend more time with doctors and specialists than with my

husband ... and it does get easier. Not that the schedule really gets better,

just

that you adapt your life to it, you schedule it around those visits. And at

some point it becomes your version of normal.

Your daughter will also adjust. She's younger than mine was when we learned

of our Ian's hearing loss, so my guess is that she'll have an easier time. What

now seems abnormal to you will be her regular routine.

I worried about our from the very beginning, about what it was going to

be like for her since I had to spend so much time taking care of Ian. Even

with our added efforts, she felt like an also-ran. We'd make special time for

her, but did not make a big deal of it and I think that was our mistake.

When she was about 6, she started to complain about every doctor visit and

tell us that we didn't love her as much as our son. Or that we spent more time

with our son because we like him better. Oy! She was, of course, wrong. But it

was her perception and feelings, so we had to acknowledge them and show her

how it was wrong. A tough job.

We intentionally scheduled Dad/ or Mom/ time, and pointed out that

we had done it. I intentionally did special things with her, things that Ian

was not invited to join in, and I made a big deal of it. " Girls' day out "

became a thing because it is usually me that takes Ian to his doctors, so it was

MY

time that she was most jealous of. The doctor visits were the one thing that

she held onto as proof that we treated him " special. " I explained that she was

going to have to learn to live with that because doctor visits were going to

be a part of his life and therefore hers. She'd grumble about maybe is she was

lucky she'd need glasses. We explained that she should try to feel happy and

grateful that she inherited her dad's perfect teeth and 20-15 vision (and he

can cook too ...sheez)

To show her what " fun " Ian had on a " doctor day " in NYC, I took her along. I

try to schedule all the different appointments into a single day. It is

exhausting, but it is over in one day. She would get a play-date and dinner out

with

Dad but she was still jealous. That day she got to see one doctor clamp

things to his head to do bone conductivity tests, she watched another doctor

measure his skull to see how it was growing, a breathing test for lung capacity

....

all the fun things she was missing. She got the point. No one in our house

ever said life is equal or fair, but I pointed out that we try to keep it

balanced. After a day like that, I usually take Ian out to dinner, or to

Forbidden

Planet -- a comic book store in NYC. A treat after a day of being a lab rat.

That day realized why there was a treat attached to the day and never

complained about it again. And ever since that day, Ian picks out a comic for

her

as well because he realized that she feels left out.

I've rambled on and I know it's not quite on-topic for the list. But I'm the

mom to two kids, and it is sometimes very hard to do that job.

Best -- Jill

[Guest guest]

In a message dated 1/2/2004 7:04:41 AM Eastern Standard Time,

marcjen123@... writes:

> I don't know how everyone else manages to keep up and keep there sanity.

> We have 2 speech therapy sessions, 1 session with an aural therapist and

> another session with an ASL instructor every week. Then we have trips to

Boston

> Children's for all of the hearing testing. I also have a 3yr old daughter

> that goes to pre-school and has to be the center of everyones attention,

> understandably. On top of our family needs my husband and I work full time

jobs.

> There is not enough hours in the day!!!!!!

> Hopefully this will slow down when Isaac is able to let us know what he

> likes and doesn't like, and what is more beneficial to his learning.

>

Welcome to the group -- and vent away. Everyone needs to do that! Your note

made me smile. I know that feeling of not having enough hours in the day, the

feeling that I spend more time with doctors and specialists than with my

husband ... and it does get easier. Not that the schedule really gets better,

just

that you adapt your life to it, you schedule it around those visits. And at

some point it becomes your version of normal.

Your daughter will also adjust. She's younger than mine was when we learned

of our Ian's hearing loss, so my guess is that she'll have an easier time. What

now seems abnormal to you will be her regular routine.

I worried about our from the very beginning, about what it was going to

be like for her since I had to spend so much time taking care of Ian. Even

with our added efforts, she felt like an also-ran. We'd make special time for

her, but did not make a big deal of it and I think that was our mistake.

When she was about 6, she started to complain about every doctor visit and

tell us that we didn't love her as much as our son. Or that we spent more time

with our son because we like him better. Oy! She was, of course, wrong. But it

was her perception and feelings, so we had to acknowledge them and show her

how it was wrong. A tough job.

We intentionally scheduled Dad/ or Mom/ time, and pointed out that

we had done it. I intentionally did special things with her, things that Ian

was not invited to join in, and I made a big deal of it. " Girls' day out "

became a thing because it is usually me that takes Ian to his doctors, so it was

MY

time that she was most jealous of. The doctor visits were the one thing that

she held onto as proof that we treated him " special. " I explained that she was

going to have to learn to live with that because doctor visits were going to

be a part of his life and therefore hers. She'd grumble about maybe is she was

lucky she'd need glasses. We explained that she should try to feel happy and

grateful that she inherited her dad's perfect teeth and 20-15 vision (and he

can cook too ...sheez)

To show her what " fun " Ian had on a " doctor day " in NYC, I took her along. I

try to schedule all the different appointments into a single day. It is

exhausting, but it is over in one day. She would get a play-date and dinner out

with

Dad but she was still jealous. That day she got to see one doctor clamp

things to his head to do bone conductivity tests, she watched another doctor

measure his skull to see how it was growing, a breathing test for lung capacity

....

all the fun things she was missing. She got the point. No one in our house

ever said life is equal or fair, but I pointed out that we try to keep it

balanced. After a day like that, I usually take Ian out to dinner, or to

Forbidden

Planet -- a comic book store in NYC. A treat after a day of being a lab rat.

That day realized why there was a treat attached to the day and never

complained about it again. And ever since that day, Ian picks out a comic for

her

as well because he realized that she feels left out.

I've rambled on and I know it's not quite on-topic for the list. But I'm the

mom to two kids, and it is sometimes very hard to do that job.

Best -- Jill

[Guest guest]

Hello,

> husband ... and it does get easier. Not that the schedule really gets

better, just

> that you adapt your life to it, you schedule it around those visits. And

at

When we found out Christian was deaf after meningitis, I went out of my way

to see all sorts of therapists, doctors etc. Sometimes there were two

sessions per day, I was on the road a lot thinking the best I could do for

my child was to meet as many specialists as I could.

Our first-born son was not even two years old when our journey with the ci's

started and I did my best to include him in everything. Maybe the fact that

he was so young made it easier. Anyway, it has worked well as he has

obviously not suffered from lack of attention. He does not care about his

brother's hearing loss, either. For him his brother is just that ... his

brother. They love each other dearly and have so much to talk about. It's

great to watch.

I also wanted to say that in our case the schedule did in fact get better.

At some point I realized that all those therapists were only humans after

all and that I could do what they did. The fact that I could not really find

a therapist that supported us 100% (i.e. our decision to mainstream

Christian and to raise him bilingually with German and English just like his

brothers) helped me to draw a clear line.

I did a lot of reading, I searched the net, exchanged notes with parents

that were in a similar situation ... and we stopped seeing therapists a

couple of months ago.

It is demanding to keep track of eveything and to have the full

responsibility myself but for us it was a good decision. I feel very

comfortable incorporating language goals into our daily routine and I really

don't need a therapist for that any more.

And I've found ways to include our two hearing children into language games,

informal or more formal " therapy sessions " at home etc. That way they don't

feel excluded (at least not more than any other siblings in a family without

a special needs child do once in a while).

My children are no angels but I am absolutely sure that they tantrum fits

etc. don't have anything to do with our family's special situation.

For our family it has worked very well. We are expecting our fourth child in

August and the children (and us parents of course *g*) are thrilled.

All the best,

Sabine in Cologne, Germany with

(12/98),

Christian (4/00; meningitis 10/00; 2 N24 1/01),

Florian (6/02)

and ? to make the family complete in August 2004 :-)

[Guest guest]

> He does not care about his

brother's hearing loss, either. For him his brother is just that ... his

brother. They love each other dearly and have so much to talk about. It's

great to watch.

I had to comment. Sometimes I talk to like I expect him to talk back

to me (just playing) and my 5 year old will yell at me " HE CAN'T TALK " it

is so funny. He doesn't usually, but sometimes when he thinks I actually

want to talk back to me, he gets upset. He also tells strangers who

talk to that he can't talk. But usually he says he's too small to talk

he doesn't understand he can't talk because of problems with his hearing.

He is not too small to talk, he is 3 years old, and Andy was speech delayed

but was talking way before 3, maybe not as much as he should but he was

talking. Anyway I thought that was funny. It's just normal for not to

talk in Andy's eyes.

-- Re: new to group, plus my other, non-HOH child

[Guest guest]

> He does not care about his

brother's hearing loss, either. For him his brother is just that ... his

brother. They love each other dearly and have so much to talk about. It's

great to watch.

I had to comment. Sometimes I talk to like I expect him to talk back

to me (just playing) and my 5 year old will yell at me " HE CAN'T TALK " it

is so funny. He doesn't usually, but sometimes when he thinks I actually

want to talk back to me, he gets upset. He also tells strangers who

talk to that he can't talk. But usually he says he's too small to talk

he doesn't understand he can't talk because of problems with his hearing.

He is not too small to talk, he is 3 years old, and Andy was speech delayed

but was talking way before 3, maybe not as much as he should but he was

talking. Anyway I thought that was funny. It's just normal for not to

talk in Andy's eyes.

-- Re: new to group, plus my other, non-HOH child