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Deaf-Blind Triplets E-mail

~ Sent by Angie
Just passing this info along.  Previous stories about the triplets are after the announcement about the TV show.
December 11, 2008
The Discovery Health channel will air a show about the deaf-blind triplets on Wednesday at 8 PM.  Check your local listing to confirm this.
Deafblind Triplet Daughters  Now That's a Parenting Challenge When I received an e-mail from Liz and George Hooker, parents of deafblind triplet daughters (deaf from ototoxic drugs, blind from prematurity), I knew I just had to feature this family on About.
As one of the parents put it:   "As you know, deafblindness is a low incidence disability. I know of a set of seven year old blind triplets in California and a set of twenty year old deaf triplets in the Midwest, but I believe we have the only set of deafblind triplets."   At the time this article was written, their deafblind triplet daughters were close to turning five years old. Stated Liz Hooker: "We're lucky that the girls don't have any cognitive impairments beyond developmental delay. We work very hard everyday to push them along. It is most overwhelming though, because I know I'm outnumbered to perform the task at hand.
I still have big dreams for them though."
Daughters Lose Eyesight  About: How old were they when you found out about the Retinopathy of Prematurity (ROP)? Do they have any sight at all?
Liz and George: Emma, Sophie, and Zoe were born premature, at 25 weeks. Sophie weighed 1# 3oz, Zoe weighed 1 # 6 oz, and Emma weighed 1# 5 oz. All three became blind from complications related to Retinopathy of Prematurity (ROP). By the time the girls were two months old, they had developed ROP. I didn't know they were blind until they were almost six months old. Sophie is legally blind, she sees colors and shapes, she also has tunnel vision. Zoe sees enough light to find the windows. Emma sees nothing.
Daughters Lose Hearing  About: How did they lose their hearing and how old were they?
Liz and George: They lost their hearing due to vancomyacin and gentamicin antibiotics that were administered when throughout their time in the NICU. The drugs were used to treat suspected sepsis. The two drugs when used together increase the ototoxicicity of the other.
They nearly completely lost their hearing when they were about 20 months old. It was a very difficult time for me because I didn't know what was wrong with them. The girls made significant progress their first year. They were about to start walking... they were saying cup and mama... then out of the blue they curled up on the floor in the fetal position. Everytime I drove them in the car they would throw up, my happy babies became angry and began to bang their heads on the floor.   I took them to the doctor thinking that their stomachs hurt, I had no idea they were losing their hearing. The reason they were curled up on the floor is because ototoxic drugs damage the hair cells on the cochlea which in turn causes deafness, in addition they also destroy the vestibular hairs. Due to the vestibular damage, the girls were experiencing severe vertigo and could no longer hold their heads up.   They also became mistrustful during this time. They all got real clingy and wouldn't roughhouse anymore. They would get scared when you picked them up off the floor, they always seemed to be on edge. It has taken three more years for them to recover and begin walking again. Most of the angry behavior is gone too. But the deafness was a huge setback for us. I hate to think of that time because I wonder if they thought I had just quit talking to them.   Daughters Receive Implants  When the triplets were two years old, they received cochlear implants.
About: How much benefit are the girls getting from the implants at this time?
Liz and George: Sophie is at a 22 month old level of language while Zoe and Emma are about 10 months in language development.
They all have the Nucleus 24 cochlear implant. They hear most speech sounds. The reason Sophie is so much more advanced is that she is legally blind.   Your vision helps give meaning to sound. For example if you hear a squeaking sound and then see a swinging door then you can associate the two. Say someone is talking while the door is squeaking, you can then determine that the door is unimportant and tune it out, and listen more to the person talking.   In a room right now one might hear the ceiling fan, air conditioning vent, dryer, radio, cars outside, and still carry on a conversation. Through normal childhood development you learn to filter sounds and determine which sounds are important at different times. The challenge with Zoe and Emma is that they see through their fingers. So we must talk about whatever they are touching to help make sense of their world.   To help them tune out the background noise we have to take them to the air conditioning vent and let them hear the noise as they feel the air coming from it, let them touch the dryer as it tumbles the clothes. These are all great exercises to help them distinguish sound. What makes it more difficult is when Zoe and Emma are touching different things. If I say "Zoe, your eggs are lumpy and hot," while Emma is eating ice cream, then Emma may associate lumpy and hot with ice cream. You can see how it gets more difficult from here.
Now That's a Parenting Challenge    In summary, the expectation is that all the girls have the tools to talk; we just have to help them sort out their world first.
-------  Deaf-Blind Triplets?  Yes, you read it correctly. 
There's a family in Texas who have five-year old triplet daughters.  The girls were born prematurely and all have complications from Retinopathy of Prematurity (ROP).  However, it affected each one differently.  Sophie can see colors, shapes and has tunnel vision.  Zoe has light perception.  Emma can see nothing.  Their hearing loss is due to strong antibiotics that were administered when they were in the NICU.  Yet their deafness occurred when they were nearly two years old.  The setbacks they faced with their hearing loss were huge.  Shortly after that, the girls each received a cochlear implant.  This has allowed them to continue their learning auditorally, not simply tactually.  They are using total communication (sign language and spoken language) for their education.  Their parents feel blessed to have three beautiful girls, but challenged because having three means that they cannot provide 100% of their time to  each child.  Still, this family is charting new territory.  It will be interesting to watch them grow into young adults.
-------   Daughers Get EducatedAbout: What educational approach is being used?
Liz and George:They are being educated with an oral and sign approach. We sign and say everything within their routine. We hope to mainstream in the future but I believe the girls will always have some sort of interpreter in school. 
Daughters Play LittleAbout: How do they play with other children?
Liz and George:They don't really play with other children. Very rarely do they play with each other. Sophie will laugh and become excited when she sees her sisters trying something new, but that's about it. They eat off each other's plate, steal one another's cups and pillows...     zSB(3,3) 
Sponsored Links 
Deaf Communications, Deaf culture, signing, surgery, and options for deaf children.  www.disabilitytraining.com/aslk.htm
Houston Chronicle, Texas USA
Sunday, July 08, 2007
Zoe and the  miracle worker
Breaking through the dark silence:  For deafblind girl, learning to communicate takes a special  teacher
Zoë's story: Teaching Zoë
Two of her sisters - Zoë is one of a set of triplets - are at school.  A third sister is with their mother at a neighbor's house, so Zoë and Mackenzie Levert have the place to themselves.
Levert watches as Zoë moves unsteadily across the hall and clambers onto the seat of a rocking chair.
A few minutes later, she urges Zoë back to the bedroom.
"You need to get dressed," Levert says, speaking out loud but also using sign language.
"Chips," the 7-year-old responds for the fifth time this morning, using the sign for her favorite snack.
Levert has spent the past 4 1/2 months standing sentinel in a world that Zoë can neither see nor hear, and she easily deflects the demand for chips and leads Zoë to the bedroom, where a series of cubbyholes is stocked with everything from socks to hair gel.

Zoë flops to the floor as Levert hands her a sock.
"Finish it," Levert  signs.
Zoë pulls off the sock.
"Again," Levert signs. "Try again."
Finally, Zoë has her socks on.
They dive together for a celebratory hug.
Dressing herself is progress, but Levert wants more for Zoë.  She still resists new foods.  She can't say whether she is lonely or name a favorite toy.  She isn't potty trained.
But one change, Levert finally decides, has been huge.
"She listens."
Not literally.  But where Zoë first ignored the teacher's attempts at signing - Levert uses a method known as "tactile sign," performed directly into the hand so the person can feel the movement - she now reaches out to see what Levert might be trying to communicate.
Looking for Anne Sullivan
For Zoë, success comes in small steps.
She and her sisters, Emma and Sophie Dunn, were born more than three months early.  The girls were discovered to be blind shortly afterward and were profoundly deaf by  the time they were 2, complications of the premature birth that left them  the only known deafblind triplets in the world.
It is a rare condition - just 45,000 people in the United States are both deaf and blind  - but for the triplets' mother and stepfather, Liz and George Hooker, and  their older sister, Sarah Dunn, this dark and silent world is simply a fact  of life.
(The girls also spend time with their father, Francis Dunn, who is divorced from their mother.  Dunn did not respond to a telephone call for this story.)
Emma and Zoë are totally blind, but Sophie has limited vision and can see about 4 feet with her glasses.  All three girls have had cochlear implants, electronic devices that can provide sound  to the profoundly deaf.
Sophie's vision helps her to identify where sounds originate, allowing her to hear and understand language through the implant, and she can communicate through a mix of sign language and speech.
Emma and Zoë appear able to hear sound through the implants  but for now, at least, can't process it as anything more than background  noise.
Texas has 733 school-age children who are both deaf and blind, according to Cyral Miller, coordinator of the Texas Deafblind Project.  Unlike the Dunn triplets, most had other physical or cognitive disabilities as well.
These children are eligible for special-education services from birth, including programs like one for deaf children that the Dunn triplets attended at Hancock Elementary School in the Cypress-Fairbanks Independent School District.  But although the state offers teacher certification in both visual impairment and auditory impairment, there is no certification in deafblindness and Miller said the disability is so rare that few teachers have experience with it.
Liz Hooker, 32, wanted more.
Raised on stories of teacher Anne  Sullivan's work with Helen Keller, Hooker thought that is how all deafblind  children are educated.
It is not.
"I always assumed we'd get a teacher like Helen Keller had," she said.  "The Miracle Worker was my favorite movie when I was a kid."
The Hookers, who had a video production company, formed the Deafblind Children's Fund to raise awareness and money to hire specially trained teachers known as intervenors for their children and others.
Liz Hooker continues to run the video company while her husband devotes his time to the fund.  A golf tournament last fall raised $50,000, according to George Hooker, enough to cover one year's salary for an intervenor.
They just had to find  one.
Taking the crusade public
The teaching style the Hookers envisioned turned out to be more common in other countries than in the United States.
Texas schools have no job classification for intervenors,  Miller said, although some districts use the term, with training varying widely.
Eventually the Hookers discovered George Brown College in Toronto and the 27-year-old Levert, who graduated from the  school.
They thought all three girls needed a teacher like Levert, but Emma and Zoë most of all.  "If you had three people drowning, who would you save first?" Liz Hooker asked.  "The one who can kind of swim, or the two who can't swim at all?"
Emma, at least, seemed  happy.  Zoë was often frustrated, and she was also the least independent of the triplets.

Levert was asked to work with Zoë, while Emma and Sophie remained at Hancock Elementary.
By the time Levert arrived from Canada, the Hookers had embarked upon another project to draw attention to their cause.
Houston-based filmmakers Cory Hudson and James Paul met the couple last summer and were intrigued by the triplets'  story. Their film, Through Your Eyes, is almost complete, and Paul  said all profits will go to either the Deafblind Children's Fund or to a trust for the triplets.
The filmmakers also pitched the story to the Dr. Phil show; an episode aired last spring focused on the strain three disabled children placed upon the Hookers'  marriage.
Humiliating, Liz Hooker decreed.
Worth it, said George Hooker, 35, as donations rolled in from viewers and from a foundation controlled by Phil McGraw, the psychologist who hosts the daytime talk show.
The Hookers say they don't yet know how much money the fund will receive through the show, but they have extended Levert's contract for a second year and hope to hire two additional teachers: one to work with Emma and a second to work with a child who will be chosen from applications submitted to the fund.
Teaching, with endless patience
Some mornings Zoë jumps out of the bathtub and dresses herself without complaint.  Other mornings, everything is a struggle, punctuated with  discordant moans and dramatic flopping on the floor.
Either way,  Levert is unflappable.
She had worked with several deafblind people since graduating from college, including a young girl and a middle-aged woman.  But the girl had limited vision and hearing, making it easier to communicate, and the older woman had more life experiences.
With Zoë, everything was new.
She already knew a few signs to indicate her needs: Drink.  Eat. More.  But Levert thought she seemed unconcerned about what other people might have to say to her.
"She is so used to it being about her," Levert said.  "Her language is what she's been shown, which is food and drink.  The only time I see her communicate with her sisters is when one gets in her space and she goes, 'Whack.' "
Sophie, able to see and understand language, is far more independent than Emma and Zoë, viewing herself more as a surrogate mother or older sister.
"Are the babies going to the park?" she asked one  afternoon as they set out.
The triplets were evaluated in May at Boston's Perkins School for the Blind, providing inspiration for Levert, as well as confirmation that their IQs are normal.
Levert's primary tool  - boundless patience - remains unchanged, as does her philosophy that Zoë  should participate in everything from making a grilled cheese sandwich to washing the dishes and sweeping the floor.
But she also has begun using traditional preschool toys to help
Zoë recognize shapes and build manual dexterity, important for learning to read and write  Braille.
Now, after getting dressed, Zoë moves across the floor of a bedroom converted into a "learning room," furnished with a child-size table and chairs, a small rocking chair and some classroom tools.  Hands in front of her, she slides onto the rocking chair, ready for the  first lesson.
Levert helps Zoë flick on a radio, allowing her to rock as an Avril Lavigne song drifts from the speaker.  Levert snaps off the radio, and Zoë stops rocking.
Zoë points to her ear - the sign for  "listen" - to indicate she wants to resume.
This lesson, teaching Zoë to signal when she hears something through the cochlear implant, is a precursor to decoding sound and, someday, perhaps understanding when other people talk

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