Thursday, February 08, 2007

Supporting Families Without Bias-- The Hands & Voices Way

One of most frequent questions I'm often asked is how can you support families without bias? I've come across several professionals in the field who give me incredulous looks when I describe the Hands & Voices philosophy:

"Hands & Voices is a nationwide non-profit organization dedicated to supporting families and their children who are deaf or hard of hearing, as well as the professionals who serve them. We are a parent-driven, parent/professional collaborative group that is unbiased towards communication modes and methods. Our diverse membership includes those who are deaf, hard of hearing, and hearing impaired and their families who communicate orally, with signs, cue, and/or combined methods. We exist to help our children reach their highest potential."

Support families without bias?
they exclaim. That's impossible! Everyone is biased!

Yes, we all have our personal belief systems, but we cross over into bias when we have a pre-determined outcome in mind for a family when working with them. When we operate with an agenda, no one wins.

In the four years that I've been involved with Hands & Voices, I've had the chance to meet a variety of families who have chosen a variety of modes and methods of communication with their deaf and hard of hearing children. It is this varied and wide exposure that leads to the ability to support families without bias because we've seen families with well-adjusted, successful kids in every communication mode. If you come from only one perspective, it is difficult to see the value in other modes/methods of communication. I have grown and changed my own perspectives as I've worked with families making a variety of choices. The bottom line that families have to face: Can I communicate with my child? Does my child have the ability to turn his thoughts into language and the ability to communicate that?

With infants now being diagnosed with hearing loss on their second day of life, parents have the ability to seek out options and talk with other parents, professionals and deaf/hard of hearing adults without having to quickly make a decision about communication methods/modes. However, in real life practice, especially in the state of Illinois, what's really happening is that parents are referred to a pediatric audiologist and the state's early intervention system which has no control over the bias of information that goes out. Parents are still heavily in contact with professionals in the decision-making stage of their infant's life. In states like Colorado, Wisconsin and Michigan, the early intervention programs have a mix of professionals, parents and deaf/hard of hearing adults under a program called Guide By Your Side.

We also have the current practice of flooding parents with a variety of options and saying to them, "It's your choice, pick one." Parents are at the beginning stage of dealing with feelings, inexperience and a whole host of other factors, some factors which will only reveal themselves with time.

When parents have a good support system in a safe arena, they're going to be open to questions and exploring options and most importantly, looking at their child's perspective of the journey as well. We stress this at Hands & Voices-- that it's not just the parent's journey, it's the child's journey as well. Look at where your child is leading you-- no decision is set in stone and you have the option to make different decisions as your child grows.

11 comments:

groovyoldlady said...

As one who exists outside the deaf world, I find it perplexing that there is so much animosity between proponents of the various methods for communicating or with treating hearing deficits.

Then again, I homeschool - and homeschoolers can get VERY volatile over educational methods and curriculli and degrees of involvement with the State and a thousand other things that are too inane to waste time soapboxing on.

It seems human nature is predisposed to making plans and solutions and then in insisting that those plans are the only plans. We are a foolish race!

It's a happy day when we can let folks use the methods, diets, schedules, plans, and interventions that WORK for them.

Anonymous said...

awesome, Karen! What can I do to support your mission? I'm a school psychologist who works in a residential school for the deaf. Like you, I've seen deaf/hh kids experience success using a variety of communication approaches. As a result I am open to what WORKS, not a particular philosophy.

Chris Heuer said...

Hi Karen:

Wow, cool... we were just running a little social experiment over in DeafDC about contacting organizations that provide unbiased counseling to parents of deaf children... you can see it (our experiment) over in

http://silentcacophony.wordpress.com/2007/02/08/update-on-contact-the-asdc/#comment-49

or in the site where the discussion originally began...

http://www.deafdc.com/blog/shane-feldman/2007-02-05/my-vblogging-conference-presentation/#comments

Had Hands And Voices heard anything about this discussion? Some people said they were going to contact that organization...

BEG said...

What I would absolutely love to do is to be involved with something like this whereby parents who want to know the thoughts of an adult deaf who was raised in the way they're considering raising their own can bounce questions and thoughts off me... perhaps they would end up choosing something else, or avoiding some shortcomings (that I think happened with me), that kind of thing.

I don't know if that fits in with the Hands & Voices, because in one sense, of course my input is biased, but if mine is one of many voices that they can consult, does it work like that?

Anyway, that's one of the reasons I blog about my thoughts on the matter, because then at least parents who try to google up information might find my (and others') blogs and learn that way, too.

I don't think H&V is involved in my state (California), unfortunately.

Karen said...

Amen, Groovy!

Karen said...

Anonymous School Psychologist,

Become a member of Hands & Voices and get involved. You can join as a member here:

Become a Hands & Voices Member

We have a bulletin board that you can participate in as well:

Hands & Voices Bulletin Board

Karen said...

BEG--
California is one of the states that is interested in starting up a chapter. If you'd like to get involved in your state, email the director, Leeanne Seaver at: parentadvocate( at )handsandvoices.org and let her know.

Surviving Motherhood said...

you know, parents seem to be constantly on the back of other parents to do things their way and no other way; whether this is to do with sleep schedules, breast or bottle issues, education etc etc. We need to be more open minded,accepting and supporting of other parents and stop all this grading and judging.

It seems like you are doing a lot of good here, well done.

Anonymous said...

I think this is a great idea.

Anonymous said...

This is awesome! When we find more ways for deaf and hard of hearing children to communicate and be a part of the world, we do them a great service.

Celeste said...

I wish that there had been testing and all that stuff when I was young. maybe things would have been different for me.
I am not part of the "deaf" world and and the "hearing" world consider me stuck up, shy, whatever and ignore me because I do not hear them speak to me.