Parent Power n POW! n Unfortunately, the diagnosis is unfair, unpleasant, unwanted and cannot be undone. But, it must be dealt with... –Atkins, 1994.

Parent Power

POW!

“Unfortunately, the diagnosis is unfair, unpleasant, unwanted and cannot be undone. But, it must be dealt with...

– Atkins, 1994

What’s your attitude...

Don’t worry…professional help is here I’m here to fix what is wrong with your

child/family I’ve got lots of experience and so can

tell you the solution …not enough sense to get out of the rain …if it were my child

Transitioning from testing to “telling”

The “Drive-by” The “Steam roller” The “Pollyanna” Ready? Set? Go!

Transitioning: from testing to “telling”

“…there has to be a better way” It’s a Family Affair

• the whole gang

• holding the baby

• corralling the sibs

It’s a Process

Grief Denial Anger Guilt Anxiety Acceptance

Transformed Parenting (Seideman and Klein, 95)

Entrance Process

–Receiving the Diagnosis

• “hearing the words”

• internalizing information

–feeling initial emotions

–telling the family

–planning for differences

Redefining Intervention

Audiologists must redefine intervention– Audiologists who assess infants and young

children can no longer hide behind the label of “Diagnostician”

– Intervention isn’t what happens after Audiologists do their job!

– Don’t be part of the problem, be part of the solution!

Family-Centered Principles

View family as a unit Recognize child and family strengths Respond to family priorities Individualize service delivery Respond to changing priorities Support family values and lifestyles

Parent Power Parents’ Rights

– to express intense emotions

– to seek another -to be annoyed with opinion the child

– to keep trying -to be the experts

– to stop trying -to time off

– to privacy -to set limits

– to dignity -to be unenthusiastic– to be a family -Sass-Lehrer, 2000

Advice for Professionals from Hearing Parents

Listen to us! Respect us! Be knowledgeable! Be honest! Tell us everything!

Advice for Professionals from Deaf Parents

Respect our opinion Listen to us! Involve us in decision making! Improve your sign skills! Raise your expectations regarding

deaf children!

Parents Wish List Deconde-Johnson, 1999

Honesty– don’t be afraid to give your professional

opinion, but don’t deliver it in “absolutes”– if you don’t have experience in working

with infants/kids, refer us to someone who does

– be honest with yourself about your own sensitivity skills

Parents Wish List Deconde-Johnson, 1999

Information– give us information to make well informed

decisions– if you don’t know, help us find the resource that

does– unbiased information re: comm. Options– give books, pamphlets, phone numbers, support

groups, websites, anything to help us understand our child’s HL and where to find help

Parents Wish List Deconde-Johnson, 1999

Choices in Amplification– Don’t assume we want the cheapest, most

preferred, easiest, smallest,most readily available device--allow us to make these choices

– Tell us funding options, or lack thereof– Tell us about longer trial periods, extended

warranties, loaners

Parents Wish List Deconde-Johnson, 1999

Choices in Amplification– tell us about earmold modifications– tell us about devices to help keep hearing

aid on our kids, out of their mouths, away from the dog!

– Be patient when we want to try many different aids until the best possible results are achieved

Parents Wish List Deconde-Johnson, 1999

Choices in Communication Remember:

– Its about communication, not methodology– Deafness is not about hearing, but about

communication– Choosing is a process that is flexible,

ongoing and changeable– Discovering what works is what makes

the choice right!

A Checklist for Attitudes/Practices

Do I believe that families bring unique expertise to our relationship?

Do I believe that family members’ perspectives and opinions are as important as professionals?

Do I involve families in planning and evaluating what happens in my practice?

A Checklist for Attitudes/Practices

Do I know the resources available in my area?

Am I willing to invest the time, energy, resources (fiscal/human) necessary to provide infant/toddler services?

Do I know information about family-to-family support and how to access it?

MartinPF@archildrens.org