Re: Questions about dad's

December 9, 2004

,

Although my daughter, Hadley, doesn't have a CI (HAs for a bilateral severe

loss), your post highlighted several of my own issues. Dan did come to all the

appointments in the beginning, which were many, but stopped coming to the

appointments once we were settled in. It's been challenging trying to keep him

in the loop (especially therapy sessions), mainly because the trips themselves

are exhausting and it's hard to remember all the details, even if you take

notes. Dan felt left out, especially as I developed very close relationships

with the people working with Hadley (2 of whom have become extremely good

friends of mine now). I now have a habit of calling him from the car after

appointments while the information is still fresh in my mind. Also, I've

encouraged him to call and email our AVT (who is very open to this) to share his

concerns and thoughts. He still comes to the " big " appointments and makes a

point to come to at least one AVT session each year (plus the parties that our

center puts on). It's not perfect, but he's feeling more in the loop now and

more confident that he's doing what he needs to do to support Hadley.

Like you, I have a wonderfully supportive family that does anything and

everything for us. They have learned all they can about hearing loss and AVT.

Their help the last three years is just beyond words. My husband's family is

the complete opposite. From day one, this diagnosis has been all about them and

their needs. They have been unwilling to educate themselves and believe we have

made the wrong choice about communication method (Hadley is completely oral;

they believe she should sign, although they have said that they would not

learn). They refuse to learn about her hearing aids. They have said no when

invited to AVT sessions. They only frame pictures of her in their house where

you can not see her aids. Other members of the family don't understand the

severity of her loss, because, at 3, she already has the language of a 5 year

old. I could go on, but you get the idea.

It's sad for us that his family just doesn't get it. However, we've never had a

good relationship with them, so their lack of support is nothing new. It was

enormously hard in the beginning when our world was turned upside down with this

diagnosis and his family wanted to talk about anything but the hearing loss.

What helped us was to just focus on the people who help and care for us. When

your own family fails you, you just have to go out and make your own. We now

have a family of friends and relatives who are what we need and we don't waste

too much time on those people who just drain the energy from us. It will get

better for you, too. It just takes some time.

Kerry

December 9, 2004

In a message dated 12/9/2004 3:24:19 P.M. Eastern Standard Time,

mightymama2004@... writes:

My husbands family is NOT supportive. They are a family who holds their

feelings in so they've been very cold towards Jakob. I actually had to tell

them that they were hurting my husbands feelings. It's rediculous!!!! Anyways

they don't even like to talk about Jakob or his hearing loss and I think

that they believe that the cochlear implant won't work and that we are making

the wrong choice. They think that it's horrible that we would put Jakob

through surgery at such a

young age. They just don't understand. Jakob doesn't like them much. He

completely ignores my husbands mom. She usually pushes him away if he gives

her any attention.

So thats the story and I would just like to give my husband some

encouragment. I hate to see him hurting. Jakob loves his dad so much and he

is a

wonderful father. Sorry that I went on and on.

Gray

,

I can't answer as a Dad, but I can answer as a wife whose been married to

the same man for almost 23 years. Our son, Ian, was about 7 when we learned of

his hearing loss. Quite late! Before that there had been other minor medical

issues that we'd dealt with. It was never quite smooth sailing.

My family is a boisterous one. Loud, opinionated, lots of noise and hugs but

not real family closeness. Certainly not one to be depended on. I joke that

we put the fun in dysfunctional. My husband's family is the polar opposite --

they're British (ish actually) with all the cliches about being reserved

and not airing your dirty laundry in public. My mother-in-law says very

little and for the first year or so of our marriage, I was convinced the woman

hated me because she never made small talk. It turns out, she never makes small

talk and does actually like me. Who knew!

My point is that my husband, because of his more reserved stoic upbringing,

did not deal with our son's issues the way I did. I cried openly, (but never

in front of the kids) worried out loud, talked things through while he

listened. I went online and did tons of research (which we both read

thoroughly). I

had to be very actively advocating for our son because that is who I am. I

called the State Ed dept, the local Deaf schools, anywhere and everywhere

looking for answers and help. I printed out the state and federal education

laws

and highlighted them. (Just a touch obsessive, huh?) My husband did things

more quietly. He came to terms with things in his own quiet way. He was stoic,

he was dependable, when he cried it was quietly and privately ... he never

denied the reality but he preferred to play it down, to not discuss every

little detail. Basically, he was the quiet man I fell in love with. Sometimes

that

confused me. But he wasn't avoiding the reality or denying it, he simply

handled things his way. And that was okay. Our personalities dealt with the

issues in our own individual ways. The main thing is/was that our focus was

always on what was best for our son and his happiness.

I think that men have a different set of issues to work through when it

comes to dealing with a son's disability. Man are taught by our society to

expect

things of their sons, that their boys are some kind of extension of

themselves. It's probably similar with a daughter -- that need to protect our

kids is

so strong no matter which gender. In accepting the child's limitations and

issues, they have to deal with the role society places on the man, the father,

the provider. Feeling overwhelmed and powerless are not things that our

society encourages men to feel or acknowledge. But those are two of the things

we

have to come to terms with as parents. Not being able to help our son was

probably harder on my husband than it was on me.

Plus it didn't help that he could not take off the time to go to all those

doctor appointments. He was there for only the really big ones, so he also felt

out of the loop. After I realized that I was controlling that end of our

lives, I started to make appointments so that he could take Ian to them, or come

with us. That way he could ask his own questions, not get all his answers

through the Jill-filter. It helped a lot.

Whatever the explanation, my husband dealt with things in a completely

different way, and on a completely different timetable. Being hearing parents of

a

D/HOH child raises a powerful collection of emotions and those take a while

to work through. Be patient with your husband and with yourself. It's a lot of

stress, even when things seem to be going smoothly. Remember to make time to

spend with each other, not always talking about the kids.

As to the non-supportive family -- ignore them. Why waste the time and

effort trying to make them be what they can't be? My quiet, stoic,

non-demonstrative in-laws turned out to be absolutely wonderful. Yeah, they were

in denial

for a while, but as they saw how comfortable our son was with his hearing

loss, they came to realize it was not a big deal. He's such a happy kid that he

made it easy for them to be comfortable with it. My family? They are as

unreliable as ever, so I don't look to them for support. They get interested in

us

because of the inherent drama, not because of any sincere concern. So why try

and make them care? I can't. And it's their loss. Our kids are great kids and

they're the ones losing out.

In Kerry's note she made a really good point -- you make your own family

when the real one falls short. We've also done that and have a wonderful

collection of friends who are more supportive than most families could ever

dream of

being. And my kids are happier because of that. They have people around them

who are truly loving and supportive. What more can you ask for?

So, like I said, go easy on yourselves. Give yourselves permission to feel

the range of emotions, to take the time to get adjusted. Jakob is going to be

just fine because you are doing all the right things for him. And give

yourself permission to walk away from family if they can't be supportive.

You're

building a new family now and your job is to keep it healthy, not cure the

extended family's woes.

Best -- Jill

December 9, 2004

Beau just can't take all the time off of work that is needed to come to every

appointment and in-home. I have some activites that he and Jakob do in the

evenings. Jakob signs better for him than he does for me! I try to tell him

everything that is going on. I write down what has happened at the appoinments

but it's not the same for Beau.

I know that his family will eventually come around but hopefully it's sooner

than later. They are missing out on jakob's life and it's just so sad. They

always blame everything on me so I'm sure that I'm getting the blame for Jakob's

hearing loss. How I did it I have no idea. It's been this way for five years

and I'm used to it. I just can't stand to see them hurting my husband and son.

We talk to them on the phone every once in a while but we don't see them at all.

We have to see them at Christmas this year and I am not looking forward to it.

My husband says we'll only stay for a short time.

Thanks for your response. It's nice to know that I'm not going through this

alone,

dawkdd@... wrote: