Wednesday, January 30, 2008

Steak 'n Shake-- The Meeting

This morning, I had a meeting with three of the executives from Steak 'n Shake. Joining me at the meeting were Beth Donofrio, a board member from Illinois Hands & Voices and Howard Rosenblum, an attorney from Equip for Equality with me. Beth assisted me in taking notes at the meeting.

Steak 'n Shake started off with an apology and said, "We believe in admitting when we make mistakes and learning from them."

I had the opportunity to explain what transpired at the drive thru window and they shared that the manager completely failed to follow their five-step procedure for delivering customer service. The incident was recorded on their camera system. The executives have viewed the tape, but there is no sound.

We discussed different ways that Steak 'n Shake could improve their service to people with disabilities. The executives listened with an open mind and it appears that they are willing to implement some changes to ensure that this type of service breakdown does not occur again in the future.

I am cautiously optimistic that we are taking steps in the right direction. It remains to be seen what progresses from this in the coming weeks. Steak 'n Shake will be getting back to me on this.

Tuesday, January 29, 2008

Steak 'n Shake Customer Says That I Owe an Apology

Here's an interesting comment that was left on the Steak 'n Shake post:

My dear aunt is physically handicapped and has a tendency to take things personally. For example, even when family members give her corrective feedback, she easily gets hurt. When she doesn't receive the special treatment she expects, she assumes she's being mistreated for her disability.

I've been to the Bolingbrook Steak n Shake. As a customer, I know this manager and he is a nice person. I'm sorry you were hurt Karen but I think you were both having a bad day and you were both being rude to each other and you both owe each other an apology. He denied you service because he FELT he was being abused, not because you are deaf. And perhaps, maybe you are taking the situation too personally, as my aunt would.

Again I'm sorry you were hurt by the situation but it's not the end of the world, right? You and your loved ones are healthy and alive and that's all that matters. You shouldn't let your world revolve around this one incident. Forget about what happened and do something fun today.


Dear Anonymous Commentor,

When I drove up to the Steak 'n Shake drive thru, I wasn't asking for "special treatment" as your aunt perhaps does. I was asking for "equal" access to a service, one that I have used at that very same drive thru several times before. With a simple modification, Mr. Manager could have taken my order as other Steak 'n Shake employees in the past have done, and I would be just another satisfied customer happily drinking a shake along with my son.

Unfortunately, Mr. Manager decided that he could not accommodate me that day. I'm a pretty patient gal, and I've done this countless times with other drive thru employees. Even after explaining it once, twice and explaining the Americans with Disabilties Act and showing him my hearing aids, Mr. Manager still could not make the decision to serve me, the customer.

Of course, after all of that explaining, I was frustrated and not to mention upset that I was being denied milkshakes on the basis of not being able to physically use the speaker. If Mr. Manager has translated that into rude behavior, well that's his view and it should not have prevented him from filling a milkshake order. From my training as an employee of a retail store years back, customer service is a high priority.

And for the record, I was having a wonderful day until I pulled up to the Steak 'n Shake. I decided to treat my son to one of my favorite shakes and he was all excited about that. All Mr. Manager had to do was make a simple modification to take the order at the window, especially when it was explained to him several times WHY the accommodation was needed. He failed to deliver on that, stated he could call the cops and asked me to leave. He must have been having a heck of a bad day.

In your comment you stated, "You both owe each other an apology." That is not going to happen on my end. I was blantanly discriminated against by Mr. Manager. I will not apologize for raising my voice when my rights were violated.

You say that I shouldn't let my world revolve around this incident. I have heard from others who have had similar struggles at the drive thrus. In the large majority of the time, it comes down to the attitudes of the people doing the serving.

There comes a point where one must stand up and say "we need to change this so it doesn't happen again."

Monday, January 28, 2008

FOX Interview with Darren from Pepsi Commercial

I turned on the TV this morning to catch Mike Barz interviewing Darren Therriault on his participation in the Silent Pepsi Commercial:

Good Day Chicago.

A big thank YOU, hand wave and shout out to Michelle who took the time to type out the transcript and send it to me:

Announcer: For a lot of folks, the best thing about the Super Bowl are the commercials. This year one of the most creative ones comes from the folks at Pepsi that’s because the entire spot is silent. It’s designed to being awareness to the Deaf community, it’s closed captioned, as well, for us so don’t adjust your volume on your set, just watch.

(Commercial plays)

Announcer: Tell you what, it definitely gets your attention, and one of the big stars of the commercial, that’s what I’ll call you, the man in the passenger's seat, Darren Tourot (sp?), who is also, you’re not an actor, but you’re an employee of Pepsi and welcome to the show, we appreciate you coming by.

Darren: Thank you.

Announcer: How did this all come to be for you? Did somebody approach you at work and say do you want to star in this commercial?

Darren: Yeah, exactly. That happened over a year ago. Clay Wesser(?) from Plano, Tx. He came up and recognized that I was Deaf and working in Chicago, and so he came up to me and asked if I wanted to participate in the Super Bowl, and I’m like ‘Really? Are you serious!?’ (Announcer laughing) and I said, OK, I’ll give it a try, and I had more time to think about it over the year.

Announcer: I’m sure there are a lot of people at home thinking you are Deaf, since birth, correct?

Darren: Yes.

Announcer: But you have particularly an implant that you can…(Darren agrees). It really raises awareness, this commercial, for the Deaf community, my understanding is that’s a running joke in the Deaf community, is that correct(referring to the commercial)?

Darren: Right, right.

Announcer: So what is the overall goal for this commercial?

Darren: Yeah, you know, my passion is to be able to increase the awareness in the Deaf culture as well as with people with disabilities. Because, you know, it’s been awhile, and I thought that PepsiCo has treated me so well and I have learned so much about the diversity and the inclusion, and I had to do something to give back. And this is my way of doing it.

Announcer: So you work in the IT department, is that correct?

Darren: Yes.

Announcer You’ve been working there for a year, and now you’re the big star, the face of this. You know, and speaking of this, raising awareness for the Deaf community, as we were chatting right here you’ve got the implant so now you can hear with 90% of sounds?

Darren: Yes

Announcer: So, but it’s been like, you compared it to a rusty faucet, turning it on after 30 years (Darren laughs) explain that to me.

Darren: Yeah, it’s almost like when you turn on the implant for the first time, I, uh, it’s almost like you haven’t used the water you know in the faucet for over 20 years and then you turn it on, and then all of a sudden it’s yellow and rusty, you know, and it’s not clear, and you can’t drink the water yet or you can’t make use of it. So, and then after it gets cleaned out, you start to hear.

Announcer: Yeah, so how long were you, did you go without, ‘cause you read lips.

Darren: Yes.

Announcer: And obviously sign. How long did you go before you got that implant, how old were you?

Darren: I started it about five years ago.

Announcer: Oh really!?

Darren: So, I was only 40 years old when I had my first implant.

Announcer: I can’t imagine what that must have been like. With all these sounds that you had never heard before.

Darren: Right.

Announcer: Yeah.

Darren: Like the birds, and all the other sounds that I normally could never hear. It just amazes me.

Announcer: Yeah, well, we appreciate you coming by, (to camera) Darren Tourot, works for Pepsi, now is a big-time star, so I will be his agent, I will take, um, (to Darren) I’ll only take 4%, is that OK? (Darren laughs) So you can see him on the commercial Super Bowl Sunday and certainly go to our website if you want to find out some more information about that, it’s great to meet you (shakes Darren’s hand) and good luck with everything.

Darren: OK, thank you.

Saturday, January 26, 2008

So, I Planned this Steak 'n Shake Fiasco?

Dear Anonymous Commenter who left a nasty comment at 11:10 p.m. on Friday night:

Unfortunately, you had too many f-bombs and b-words in your comment for me to allow it on this site. One previous f-bomb comment was enough for me to let through already.

You accused me of planing (I think you meant planning) this whole thing for money. I think you're missing something here. I drove up to the window and explained that I couldn't use the speaker and ordered two small milkshakes, one vanilla and one chocolate.

If Mr. Steak 'n Shake Manager had simply taken my order and given me the milkshakes, I would have been merrily on my way with a happy son by my side, with both of us enjoying our treat. Even if Mr. Manager argued and then completed the order and we had gotten our shakes, it would have been just another bad day at the drive thru and I don't think the TV stations nor WLS Radio would have picked this up. Unfortunately, Mr. Manager's actions and denial of service turned this into a different result.

As for what's going to happen after this, I do not know. We have a meeting with Steak 'n Shake's representatives and I would like to see improved access at their restaurants.

Stay tuned.

Friday, January 25, 2008

Fox News Coverage on the Milkshake Denial

Fox News Chicago covered the Steak 'n Shake Denies a Milkshake story:

Deaf Woman Says Steak 'n Shake Refused to Serve Her

How ironic is it that I can't access a news story on the web because it isn't captioned? I dream of the day when it's all accessible!

Thursday, January 24, 2008

Steak 'N Shake on the News

Here's ABC New's coverage:

ABC News

It is not captioned, but the story is below the video.

Fox News is covering this at nine and ten p.m. tonight and tomorrow morning.

Steak and Shake--Looks Like This Touched A Nerve

Yesterday, I just wanted a shake from Steak 'n Shake and was turned away. Today, I'm seeing how amazing the internet is:

Diversity, Inc.: Second Class Citizen

Emoms At Home: Standing up for a Friend and Fellow Blogger

The Consumerist: Steak 'n Shake Manager Denies Service

Henry Kisor: Making a Fuss

Laurel Papworth, Social Networks: Australia Event: Social Networks and P.R.
The Strategy Guy: Being Stupid

Joliet Herald News: Local Activist Sends Loud, Clear Message

Joliet Herald News: Steak 'n Shake Part Two

Business and Blogging: Crisis Case Study

Google Finance: The Steak 'n Shake Company

Slacker Manager: Steak 'n Shake, How Can Management Overcome This?

Deaf Pagan Crossroads: Why Can't I Get My Milkshake?

Just Thinkin': Turned Away at the Drive Thru for Being Deaf

Do It Myself Blog: Steak 'n Shake Questions Answered

Megite Business News: Steak 'n Shake Manager Denies Service to Deaf Mother

Emoms at Home: Sometimes Its Just About Mommies

The Hearing Exchange: Deaf Mom Shakes Up Steak 'n Shake

The Daily Herald: Woman Cites Hearing Problem in Dispute with Steak 'n Shake

WTMJ 620, Wagner on the Web: Maybe They Can Hear Her Now?

Bad American: Customer Service Horror Stories

So Good: Steak 'n Shake Manager Under Fire

Carpe Factum: Diversity or Adversity

Jim's Blog: Steak 'n Shake Denies Service

Spin Thicket: PR Nightmares

Kirkogitation: Controversial Milkshakes

My Wooden Spoon: Boycott Steak and Shake

A Cowboy's Wife: Boycott Steak and Shake

The Marketing Eggspert: What Steak and Shake Will Do For Its Customers

Growing Up With a Disability: Why We Need the ADA

Growing Up With a Disability: Steak 'n Shake Apology

Do It Myself Blog: Deaf Mom Denied Service

Is That Even Legal: Falling On Deaf Ears

Accessible Everything: Inaccessible Milkshakes

Deep Muck Big Rake: But The Emperor Has Nothing On At All

The Daily Grind: Outrageous

Jamie Berke, About.com: Two of the Hottest Things This Week

Do It Myself Blog: Deaf Mom Continues her Fight for a Milkshake

Slinkerwink: Fighting Back Against Discrimination

LeahLefler: Things That Really, Really Make Your Blood Boil

A Simple Desultory Dangling Conversation: How NOT to Do Customer Service

Chat With Bryen: Steak 'n Shake Denies Deaf Access

Palms to Pines: Would You Like Some Discrimination With That?

An American Mom in Tucsany: This One's for the Ladies

Ethan's World: Some Good, Some Bad

On the Wire: Steak 'n Shake Woes Loom

Cheryl Beryl: People Aren't Reasonable

Do It Myself Blog: FOX Airs Deaf Mom's Fight for a Milkshake

Single Work At Home Mom: Fast Food Restaurant Refuses Service to Deaf Woman

Berke Outspoken: Possible Solutions to Denied Milkshakes?

Laurie's Dance with Sound: Hearing Impaired and CI News

Adversity University Blog: End of the Week Gratitude Theme #12

Chronicles of a Bionic Woman: Karen, the amazon woman!

Lolypup: Civil Rights and a Milkshake

Sam Spritzer's Web Site: Beware of Hearing Impaired, Serve at your Own Risk

Deaf Weekly: Steak 'N Shake Flap Sparks Internet Storm

On the Wire: Steak 'n Shake Officials Meet with Customer

Starked San Francisco: Deaf Mother Denied Service at Steak 'n Shake

Jim's Thoughts: Ignorance

My Chronic Life: Steak 'n Shake Disgrace

Terrible Palsy: It's That Time of the Month

Ima On (and off) the Bima: Things That Make Me Crazy

Bad Cripple: Why the ADA is Needed

Growing Up With a Disability: Update on the Steak 'n Shake Discrimination

Hippie Spelunker: Steak 'n Shake Commits a Heinous Injustice

Hippie Spelunker: Steak 'n Shake Update

Hippie Spelunker: Serving Americans with Disabilities

Planet of the Blind: How Many Fingers Am I Holding Up?

I Am Not a Hamster: Steak 'n Shake Employee Shoots Company in the Foot

The Net-Savvy Executive: Why Companies Need to be Listening to Blogs

Happy Family At Home: I Love This!

I'm Adopting a Deaf Child with Ushers: A Glimpse of the Future?

Granfallon Books: Customer Service

Dispatch from the Third World: Steak 'n Shake Embarasses a Deaf Customer
Eternal Sunshine of an Empty Mind: I Can't Believe the Nerve of Some People!

Butterfly Like Me, Deaf: Drive Thru Service Reasons

Mulberry Summer: Unacceptable

Rolling Grains: Where ADA Compliance Was Taken off the Menu

Our Campaigns: Steak 'n Shake Denies Service

Today's Cool News: Even I Can't Hear What They're Saying

Waving with My Deaf Hands: I'm Proud of Karen, It's my Turn to Share

Fox News Blogs: Steak 'n Shake Violates the ADA

A Cowboy's Wife: Steak 'n Shake Follow-up & Comment Response

Erin's Mother: Not Giving Them One More Penny

Rachel's World: An Accessible World?

The Deaf Sherlock: Deaf Mom Power!

Random Digest: Steak 'n Shake Manager Denies Drive Thru Service

Andrea's Acadia Weblog: Service DENIED

Last night, shortly after calling the corporate headquarters via relay, an employee from their Human Resources division called me. She sent me an email apologizing for the incident. She called again this morning to see if we could set up a meeting with the manager in question and discuss the issue. They agreed to provide an interpreter for this meeting.

Stay tuned.

Disability Blog Carnival--What I Wish Professionals Knew

This week's Disability Blog Carnival focuses on the theme, "What Professionals Should Know About Disability" and is hosted over at Ryn Tale's Book of Days.

If I had a dime for every time a professional predicted an outcome for a child with a disability based on what they "learned from many years in the field," I'd be a millionaire.

Make that a zillionaire.

I've heard the same stories over and over from families: "My (insert professional) said that if I did (whatever it is they're recommending) then my child would (fail, succeed, you name it) so I better follow their advice or (earthquakes will happen, the world will end.)

No kidding, I would be rich, indeed.

So here's what I wish professionals knew:

Park Your Bias at the Door

You may feel strongly about a certain course of action, but pushing it isn't going to help either one of us. It is one thing to share your personal belief system and your knowledge in a way that helps me to expand my own, but it's another when you steamroll it over me or have an agenda of your own.

Expand Your Skills

You may be trained in one direction, but take a look at your profession and see if it can be expanded in other ways. Make sure you have the skills in all areas. I once had a pediatric audiologist tell me, "I don't have much experience around deaf and hard of hearing adults." If you're in the business of working with children, make sure you're familiar with the adult world they'll be growing into.

This is My Journey, Not Yours

I do value the input that professionals have given me over the years. What annoys me is when they don't like the direction my choices are going in and they express their opinion. Keep in mind, this is my life and my journey. Even if your professional opinion differs from mine, have the graciousness to expand your views to respect mine.

Finally, I'd like to share some tips over at Hands & Voices for those who work in early intervention with deaf and hard of hearing babies:

A Parent's Wish List for Early Interventionists.

Wednesday, January 23, 2008

Steak and Shake Denies Service


After picking my youngest son up from school, we decided to grab some shakes at the local Steak and Shake before heading over to the middle school to pick up Lauren.

I went through the empty drive through and drove past the speaker. After waiting a few minutes at the window, I finally honked the horn and waited some more. After a second honk a few minutes later, a young man appeared.

"Hi! I didn't order back there as I can't hear," I said, pointing to my ear. "I'd like two small shakes, one vanilla and one chocolate."

"You'll have to drive around again so I can take your order through the speaker," the guy said.

"I can't hear back there, so I'll need you to take my order here," I explained.

"No, it's our policy. You'll have to just drive around and tell me your order and then I can take your order."

"I can't use the speaker, which is why I'm at the window giving you my order here!" I started raising my voice a little, as I was getting frustrated at the hoops he was putting me through.

So I told him about the Americans with Disabilities Act and I explained that taking orders through the window is an accommodation that I need because I can't use the speaker to place an order.

He kept insisting that orders need to be taken at the speaker. "If you had just let me know at the speaker that you needed accommodations then I could take your order through the window."

"But I'm DEAF! I can't hear on the speaker! When I drove up, the first thing that I told you was that I couldn't order back there because I can't hear through the speaker."

"No, you didn't tell me that," he said. "If you had told me about your disability then I could have accommodated you."

I sat there flabbergasted. I was getting more upset by the minute. All I wanted was the dang shakes! Then another car pulled up behind us.

"Look, if you're not going to take my order, I'm going to file a complaint and let the corporate office know about this."

"Well, I can call the cops on you for disrupting the business and holding up the drive thru."

"You're going to call the cops on me? I'm just trying to get service here!"

"I'm done with you." He abruptly shut the window, threw up his hands and walked away.

Good gosh, did that guy have any idea what he just did? Denying me and my son service simply because we couldn't use the speaker for an order?

I wasn't finished with him. Oh no. I beckoned him to open the window again. He looked at me with an air of superiority and opened it.

"I'll need to take down your name and your supervisor's name." I was surprised that he willingly gave that information. He took his name tag off and held it up for me to see. Then I realized something--he wasn't taking me seriously. He figured I was just playing with him.

So I lifted up my hair and showed him my hearing aids. The look on his faced changed a bit. I guess it started to sink in that even though I speak well, I wasn't kidding about being deaf. You would think at that point, he would graciously return to "serve the customer" mode and take my order.

He still didn't. I explained to him that I was going to call the corporate office and let them know that I was being refused service. "Go ahead, call them," he said. "You will need to leave, you are holding up the line."

And he closed the window again.

Steak and Shake, you'll be hearing from me.

Tuesday, January 22, 2008

Mom is Missing a Few Brain Cells

My oldest son's Stanford Achievement Test results came in the mail last week. I glanced through them and was surprised to see results equal to 6th and 7th grade results. There were two results that said "PHS."

What does "PHS" stand for, I asked the school counselor. That means the student scored "Post High School," or college level, she replied.

Oh cool, my son at least had two results in the PHS range.

When I showed David the results of his test, he said, "But Mom, that test was so easy. How could I score so low in some areas?"

I shrugged. Maybe it was a bad day--everyone has an off day, you know?

I was at my friend Beth's house over the weekend and she asked me about David's scores. She was showing me her daughter's scores and going through the papers, explaining that one of the forms was just a sample.

Uh oh.

I went home and looked more carefully at the test results. I was indeed looking at the sample results and interpreting them as David's results. The paper that I thought was simply a deaf norm comparision was actually the test results for David. He scored a "Post High School" in every catagory.

David was happy to learn that his brain cells were working fine.

Mom, however, is still trying to figure out where hers went.

Saturday, January 19, 2008

I Have a Beef With Tyson

Twenty four point six million.

Read that again.

$24,600,000.

A pretty big number, eh?

That's how much the head honcho at Tyson collects to run the world's largest meat processing facility. The Proxy Governance firm believes that Tyson executives are over-paid: Proxy Firm Says Tyson CEO Paid Too Much.

If you remember awhile back, I had a culinary adventure with two bags of Tyson chicken parts. The outside of the bag showed beautiful white pieces of chicken. Inside both bags were mostly fatty chicken parts with a few white pieces tossed in.


So hearing that the Tyson CEO is collecting a huge amount of compensation for his job just makes me mad. How about directing the company money to produce a quality product instead?

Listen up, Tyson--you need to cut the fat from the executives' pockets as well as your product.

Friday, January 18, 2008

Dr. Robert Davila's New Book

Dr. Robert Davila's book, Moments of Truth: Robert R. Davila, the Story of a Deaf Leader,was recently released and it is on my pile of "books to read".


I first met Dr. Davila at the Chicago Hearing Society Volunteer Lunch in October, 2007. He is shown above with Jill Sahakian (CHS Director) and Mary Clark. Bob was the keynote speaker and he shared stories of growing up deaf in a large Hispanic family. His father passed away from a heart attack when he was a young boy. After he became deaf at the age of eight, his mother put him on a train to head up to the residential school over 600 miles away. Dr. Davila learned to speak Spanish at home and learned English and American Sign Language in school.

Aaron at Aaron Cues has a wonderful summary of Dr. Davila's recent speech at the Illinois Mom's Night Inn: A Chance Encounter with Dr. Robert Davila.

Dr. Davila impresses me with his resiliency and his strong work ethic. I look forward to reading his book: Moments of Truth: Robert R. Davila, the Story of a Deaf Leader. I'll be sharing it with my kids as well.


Thursday, January 17, 2008

Central Institute for the Deaf--My Sister's Memories



My sister Linda and I recently went out to dinner at our favorite restaurant, Luigi's House. On the way home, we were reminiscing about the past and Linda brought up some memories about her three years at Central Institute for the Deaf. We had never really talked about her time at the auditory oral school that she attended from preschool until third grade. So tonight, I asked her some questions about her memories of the school.

Linda was born with normal hearing. When she was two years old, she fell off of a chair and hit her head on the corner of a baseboard. She instantly became profoundly deaf.

My parents didn't really know what to do. They lived in Ste. Genevieve, a very rural town with almost nothing in terms of support services. During an appointment with the family doctor, my mom learned about Central Institute for the Deaf in St. Louis. They brought Linda to CID to be tested and learned that she was severe-to-profoundly deaf.

"I remember Mom crying and she got up to leave the room," Linda recalled.

Mom made the decision to have Linda live with her sister, Velma, and attend CID. Aunt Velma's house was about 45 minutes from CID. Every morning, Linda joined another classmate, Rick Wind and one of his parents on a car ride to school. Every afternoon, Aunt Velma walked a half mile to a bus stop and rode the bus to CID to pick up Linda. They took the bus back together and walked home.

"Aunt Velma worked really hard to help me learn to listen and keep my speech going," Linda recalled. "Every night, she would place sentences in front of me and go behind my back and I would have to practice listening to each sentence."

That was clearly a form of Auditory Verbal therapy, and this was in the mid-1950's, long before Auditory Verbal was widely known.

I asked Linda about her memories of school, I was curious if it matched some of the negative things I had heard about the early days of auditory oral schools.

"I really liked it at CID," said Linda. "My memories are good ones. The teachers were wonderful. I can remember hugging them, especially Dr. Helen Lane. I would go to Dr. Lane's office to visit her every opportunity that I could."

Linda remembers that the teachers were strict about getting the kids to work on their speech and practice listening. "They didn't seem to give up and they worked with us over and over."

Linda remembers taking rhythm and music classes with a piano. She also remembers trying to identify different sounds. "When they played airplane noises, we would run around on the floor and pretend we were airplanes," said Linda. "I also remember some objects and animals that made noise, and we had to listen to identify which object made which noise."

Linda went to Northern Illinois University and attended the Program for Hearing Impaired for one year. She was introduced to American Sign Language at NIU--just as I was many years later. Linda moved to Michigan a few years ago and she's been getting involved in the deaf clubs up there.

In the family photo above, Linda is second from the left in the back. I'm not in that photo, I wasn't conceived at that point. :)

Wednesday, January 16, 2008

Wordless Wednesday--Dreaming of Summer



It's freezing cold in Chicago and I'm dreaming of summer at the lake!

Happy Wordless Wednesday!

Monday, January 14, 2008

Mom's Night Inn--Rested and Exhausted!


Illinois Hands & Voices hosted a Mom's Night Inn this weekend. This is an event that I always look forward to. Not only is it a weekend to connect with other moms of deaf and hard of hearing children, but it is a fun learning experience as well. This is the third year we've hosted the event and we used a new location this time which seemed to work out well.

On Saturday, we had Leeanne Seaver from Hands & Voices as a guest speaker and she did a presentation on "Beginning With the End in Mind." We had pizza and salad for dinner, crafts, massages and manicures. There was more food later that night (lots of chocolate!) and some great discussions.

We were so fortunate to have Dr. Robert Davila from Gallaudet join us on Sunday morning, thanks to our board member, Mary Clark. We had a parent and child panel and it was interesting to get both perspectives: the parent's story and the deaf/hard of hearing child.

Here are some photos from the weekend:


Fun crafts included votive candle holders and inspirational bracelets!


The panel:



Leeanne Seaver, Dr. Davila and me:

Friday, January 11, 2008

The Dance of Language, by Sara Kennedy


I met Sara Kennedy several years ago when I first joined the board of Hands & Voices. I knew I liked this hip mom from the beginning, as she was also a homebirth mom. Sara wrote a beautiful article about the delicate dance of language and communication and I wanted to share it with my readers:

Not so long ago, I looked down at a 14 month old toddler in my lap after learning that she could not hear. Those intense blue eyes confounded me – did I know her? Did she know me? Communication as I had known it halted altogether. Sara Madeleine became again, in my fear of the unknown, the little stranger that she had been to me on her first day of life, before we started the dance of learning to know one another. Like most parents, I don’t think I heard another word the audiologists said after “your daughter has a profound hearing loss.”

As a health care provider, what surprised me next was that it was up to us, as parents, to decide how we wanted to communicate with her. There weren’t reams of double blind randomized controlled trials to tell us that a majority of children learned to read and write well or to speak or to become CEO’s with this or that method. It was up to us, a couple who couldn’t yet define otoacoustic emissions or knew anything about the oppression of Deaf people in history… to choose Maddie’s first language.


To read Sara's full article go here: The Dance of Language.

Wednesday, January 09, 2008

Wordless Wednesday--Two Hours in a Beauty Salon



My Mother-in-law gave me a gift certificate to her salon because a few scraggly gray hairs popped up over the summer. The kids noticed.

"Mom, you've got GRAY hairs!" they announced on one beautiful sunny day. You'll note that they added an "s" to that sentence.

I'm no longer a dye virgin. Today, I spent two hours at the Lush salon. I had no idea a shampoo could feel so good. The last time I was shampoo'd by someone was on my wedding day (and no, it wasn't the hubby).

Happy Wordless Wednesday!

Tuesday, January 08, 2008

The Impact of Hearing Loss on Kids

Paula Rosenthal posted an interesting article from the Better Hearing Institute on her blog: One Million Youth in America with Hearing Loss May be Left Behind, National Survey Finds; Even ‘Minor’ Hearing Loss Causes Major Problems

The study focused on unilateral and mild hearing loss and found that when left untreated, several areas of life were affected, namely:

Social skills (52%)
Grades in school and language development (50%)
Emotional health (42%)
Relationships with peers (38%)
Self-esteem (37%)
Relationships with family (36%)


Also in the study was this quote:

“Based on our findings, I am concerned that a sizeable population of young people in America is being left behind because they do not fit existing paradigms of hearing disability,” said otolaryngologist Dr. William Luxford of the House Ear Clinic, a BHI Board member and co-author of the study. “We need a fundamental re-examination of the current hearing health policies and protocols influencing America’s children with hearing loss.”

Dr. Luxford is right. We do need a re-examination of the health policies and protocols. But those policies and protocols need to include a network of parents and hard of hearing adult role models as well as connecting kids with other kids. I would like to see that included in the solutions and perhaps we'll see different numbers in the catagories above.

Sunday, January 06, 2008

Captioned Radio--Don't Read and Drive!

Tim Poindexter over at Disaboom posted a recent release about captioned radio:

Closed Captioned Radio? That's Right, It's Here!

The first over-the-air broadcast is set for January 8, 2008.

Back in April, 2006, the actual idea was demonstrated at a Broadcasting Conference: Harris Corporation and NPR Labs to Demonstrate New HD Radio Services for Hearing and Visually Impaired at NAB2006.

I remember reading about this back on Jared's Blog awhile back, but I didn't pay attention to it much. The radio was something that has been off-limits in my life for so long, that I didn't even think of the impact of captioned radio.

I can imagine that captioned radio is going to be a great tool for adults and children with new implants as they'll be able to use the radio to practice listening therapy.

It's going to be interesting to see how this develops. All radio transmissions are supposed to convert to digital by 2010. This doesn't yet mean that all will be transmitting captions, but the capability is there.

If they're installing captioned radios in the front dash of a car-- uh oh! I have a feeling we'll be seeing some multi-tasking drivers out there.

Saturday, January 05, 2008

Non-Fiction, Non-Captioned Movies

Arrrghhhh!

The oldest son has a few extra credit projects that include watching non-fiction movies from the library. The few movies that I found aren't captioned, and have no English subtitles.

I'm off to browse the Described and Captioned Media Program list to see what they have on there.

We have encountered this same issue in the schools. I do wish that we could make it mandatory that all educational materials be captioned so we wouldn't have to deal with trying to substitute movies or change the curriculum.

When my oldest was in middle school, they showed several movies without captions. It wasn't until about the fourth movie that my son finally mentioned it to me. We had a meeting at the school and I made it clear that they needed to provide every movie with captions. The team agreed.

When Lauren entered middle school, the vice-principal called me to the school to inform me that the science teacher had a movie that wasn't captioned. They couldn't find a comparable movie that was captioned. The movie covered lab safety, the same movie that my oldest son previously sat through with an interpreter before we enforced the captioning issue. My daughter doesn't use an interpreter. What could they do?

Well, one option was to hire a CART interpreter at the tune of $90 to $119 per hour with a minimum of two hours. His jaw dropped. Or, ship the movie out to be captioned, which could cost a pretty penny. His jaw dropped more.

In the end, the teacher created a powerpoint instead and showed that to the class instead of using the movie. The school is now in the process of going through all of their DVDs and identifying the ones without captions and looking to replace them with captioned versions.

If we could just pass a simple law requiring all DVDs to be captioned or subtitled, think of the energy we'd save.

After all, as Larry Siegel says, "The importance of communication and language for deaf and hard of hearing children is so basic as to be beyond debate."

Wednesday, January 02, 2008

Heather Whitestone--From her Mom's View

When Heather Whitestone became Miss America back in 1995, I watched the pageant with great interest. This was the first time in history that a profoundly deaf contestant had become Miss America. A video clip of that moment can be viewed here: Video of Heather Whitestone.

I read Heather's book, Listening With My Heart shortly after it was released. Two weeks ago, my library had the book, Yes, You Can, Heather! on a display shelf. Written by Daphne Gray, Heather's mother, she tells the story of raising a deaf child during a time when Auditory Verbal methods were not commonly known.

Daphne shares the long hours that were spent on language and speech: "...I had to devote all my time after supper to working with Heather on her speech therapy as well as her schoolwork--and now the Beka material on top of it all. Some nights we'd finish so late that I'd send Heather on to bed at 10 or 10:30 knowing I'd have to wake her up before five the next morning so we could go over the words for her spelling test."

Daphne had an amazing amount of dedication to her daughter--and it helped that Heather had an amazing amount of drive to match.

I found myself relating to Heather in a situation where Daphne tried to encourage Heather to be upfront and open about being deaf: "Like most teenagers, she wanted to belong and not stand out from the crowd. Usually she wore her hair in a style that covered her hearing aids. As a result, many of her high school classmates never realized Heather was deaf."

Yup, been there, done that. Did it so well that many students didn't even know that I wore a hearing aid until a news article appeared in the high school newspaper featuring me and my friend Shawn, who was also hard of hearing. It took me nearly a year after I became deaf before I could wear my hair up in a ponytail with my hearing aid perched on my ear. Comfortably. In public.

Daphne also touched on social bluffing and how difficult it was for Heather to participate in conversations. "Lunchtime was especially miserable for Heather," Daphne wrote. "She found it nearly impossible to pick voices out of the constant roar of cafeteria commotion in her ear. That meant she had to rely almost totally on lipreading around the lunch table. 'I get tired of asking my friends to repeat what I don't hear,' she admitted. 'And I think somtimes they get tired of me asking. So I just laugh when the people around me laugh. That makes me sad. I want to be part of the conversation. But I'm not.'"

That particular section of the book made me sad as well. I think it is so easy for us parents and professionals to get caught up in the accomplishments of deaf and hard of hearing people and forget that on a deeper level, if communication access isn't accommodated for, then deaf and hard of hearing people still get left out of conversations and social situations. From what I see in my own district, there's still a lot of social isolation going on and we're not addressing the social/emotional issues of mainstreamed students.

As for Heather, she has gone on to open her own company and line of beauty products. She's married and has three little ones of her own. She's a spokeswoman for the Starkey Foundation and Cochlear Americas and has bilateral cochlear implants.

Tuesday, January 01, 2008

Happy New Year!

We may have looked a little wild last night, but it was actually very mellow and low key. Happy New Year to you all!


And yes, that's Ginger Ale, not champagne in the kid's cups!


Goodbye 2007--it was a nice year!