This is just a quick blog entry from a very sleepy college student who has been up to the wee hours studying and just finished taking midterm exams. I’m very ready to throw my graduation cap into the air. In the meantime, I can still enjoy some little treats like doughnuts with red and pink sprinkles (we have to splurge once in a while, don’t we?) while I’m still at hard work. Moreover, I can enjoy even more treats! Last night, I was notified that I have been selected as one of the six finalists for Cochlear’s Hearing Hero! So, if you want to send me to Colorado, PLEASE VOTE for ME, por favor! AND…please pass on this message! Thank you!!!! CLICK HERE TO VOTE!
This hilarious video from the Argentine Foundation for the Hearing Impaired argues that, “If there’s nothing you won’t do for your child, have them take a simple routine [hearing] test” and gets the point across in a very memorable way!
TRANSCRIPT: Though the actors’ lips are moving, there is no audible dialogue. Piano music plays throughout the commercial. The doctor slaps the baby’s bottom and the baby cries. There are thumping and hitting sounds as the father beats up the doctor.
Derrick Coleman, a tailback on the UCLA Bruins football team, is not only a successful athlete who happens to have hearing loss, but also a stellar young man who has distinguished himself as one of the recipients of the 2009 Allstate AFCA Good Works Team®. (AFCA = American Football Coaches Association)
UCLA sophomore Derrick Coleman is one of the 22 student-athletes being honored. Coleman, who plays college football despite a near total hearing loss in both ears, speaks to youngsters about staying positive despite their hearing issues. He wears hearing aids, including at practices and games, and encourages youngsters not to be embarrassed about wearing the devices.
Coleman communicates using spoken language, and, according to THIS LA Times article, “I just went from being a child who never talked to one who never shuts up,” Coleman said, smiling. “Sometimes I felt a little out of place because I had a hearing aid. But at the same time, I did everything the other kids did.”
How does he do it? He relies on expensive, waterproof hearing aids — kept snug to his head by a skull cap — in order to hear commands in the huddle and during practice. (The Orange County Register)
Derrick Coleman — what a remarkable hEARo for us all!
Because I have been out of the picture on this blog for months, I know that some are thinking, “Where in the world is Rachel?” My three and a half month trip to Europe made another big exciting mark in my life, including in the CI world as not only did I meet Vivie, Christian and his family, and Matthieu and his family, but also I gave a little talk about the benefits of AVT with Caroline at Universite de Nantes in France in French (video will come soon). I have to give all of them a big thanks for being wonderful hosts.
I also had a tearful moment last October when I received a letter of denial because of medical reasons from the Peace Corps after having been nominated to work in a French-speaking country in Africa. They questioned my ability to learn a foreign language due to my hearing loss and maintaining my cochlear implants. While I could have appealed the decision, a door opened up with exciting new offers shortly after going through a moment of grieving. I’ve been offered a placement to study anthropology at five grad schools in the UK, including the school where Alexander Graham Bell studied, University College London.
As soon as I make the final decision on where to go for grad school, I will inform everyone. However, in the meantime, I’m going to enjoy the rest of this school year being a random student at an art school.
Happy 2010!!!
P.S. If anyone knows any scholarships for any graduate schools that I could apply for, please let me know!
Wow! A co-worker of mine just clued me in on an amazing world of FREE publications for parents, professionals, and/or policymakers available online at the Zero to Three website.
After completing a very short, free registration (you can even opt out of emails if you wish), click on the KEY TOPICS button in the top menu, select items of interest to you, and read away! Many of the materials are written in easy-to-understand language for new parents, and some are even available in Spanish! For professionals, this is a great source of parent education materials, and for parents, it’s a great way to learn more about any early childhood topic of interest to you. Many of the resources under “Language and Literacy” are especially applicable to children with hearing loss, but there are other articles, like those about nutrition and healthy sleep habits, that could benefit your children as well. Enjoy!
I can hear your complaints now, “You’re kidding me, right? I just found out my baby is deaf and am dealing with all the added appointments and equipment that brings and now you’re asking me to voluntarily add more to my life by finding out whether or not he can see? You must be crazy!”
Well… yeah, I kind of am. Chances are, your child can probably see just fine, but it is always nice to know for sure. You see, there are some syndromes that cause hearing loss that are also associated with vision impairment (for example, Usher Syndrome). By being proactive NOW, you can head off problems before they become major issues LATER — and that’s always a good attitude to have! Better yet, I recently learned of a FREE program for infant vision screenings: InfantSEE.
According to their website, “InfantSEE®, a public health program, managed by Optometry’s CharityTM – The AOA Foundation, is designed to ensure that eye and vision care becomes an integral part of infant wellness care to improve a child’s quality of life. Under this program, AOA optometrists provide a comprehensive eye and vision assessments for infants within the first year of life regardless of a family’s income or access to insurance coverage.”
Find an InfantSEE provider located near you by clicking HERE, and start searching! I was even able to find one optometrist in my area who specialized in pediatric special needs assessments, and some others who spoke languages other than English to better serve a wide variety of patients.
InfantSEE assessments are available for ALL infants, not just those with hearing loss — so have siblings or other infants in your family tested, too!
Two weeks ago, I attended an excellent presentation on deaf education in Costa Rica. The presenters were listening and spoken language educators, one of whom completed her training at Fontbonne in St. Louis, MO, USA. Together with other listening and spoken language professionals in Costa Rica, they are active members of Adis, an organization dedicated to:
1. Neonatal Universal Hearing Screening
2. Pediatric Audiology Evaluation
3. Etiological Evaluation of Deafness
4. (Re)habilitation Programs, where the children with hearing loss will develop communication and social skills according to their cognitive capacity
(from their website, www.adiscr.com — check it out, it’s available in both Spanish and English!)
They shared some fascinating facts about the situation for children with hearing loss in Costa Rica and what is being done to ensure that a listening and spoken language education is a viable opportunity for children in their country. Here is what I learned:
HEALTHCARE/AUDIOLOGY/COCHLEAR IMPLANTS/HEARING AIDS
Costa Rica has a public health system, known as CCSS.
All cochlear implant surgeries in the country are performed at one hospital, somewhat confusingly named “Hospital Mexico”.
Only 20-30 CI surgeries are performed per year. There is a waiting list and the order in which people receive the cochlear implant is governed by priorities determined by the government health organization.
Currently, late-deafened adults receive first priority for cochlear implant surgery. Children who need CIs are second in line on the priority list and thus many children receive the surgery at ages that would be considered “late” in the US (ages 2-4, if they’re lucky)
Currently, people with hearing loss in Costa Rica are only eligible to receive one cochlear implant. There is one child in the entire country who has bilateral CIs — her parents are both physicians and were very proactive in securing two implants for their child at a very young age. Other children are not so fortunate.
Bimodal amplification is rare in Costa Rica. Once patients receive one cochlear implant, they rarely continue use of a hearing aid in the contralateral ear (presumably due to cost).
The government pays for the CI surgery and cochlear implant, but does not cover mapping, rehabilitation, batteries, maintenance, etc.
The brand of cochlear implant available changes year to year as the government of Costa Rica negotiates contracts with the various manufacturers. Last year, all patients received Cochlear brand implants. This year, it’s Advanced Bionics. Patients are not able to choose their brand of CI.
The government also pays for hearing aids but, like CIs, does not cover therapeutic follow up, maintenance, batteries, etc. Every two years, hearing aid users receive a stipend for the purchase of bilateral hearing aids. People who want hearing aids that cost more than the government stipend must pay for the difference out of pocket.
There are currently ZERO pediatric audiologists in the country of Costa Rica. There is one student who has come to the US to study to become her country’s first audiologist with specialized training in working with children.
EDUCATION AND REHABILITATION
As noted above, the hospitals that perform cochlear implant surgeries do not provide (re)habiltative follow up — there is currently much discussion and debate in Costa Rica as to who should shoulder the responsibility for providing appropriate follow-up care for people with hearing loss — the health system or the educational system
There is a strong capital-D Deaf Culture in Costa Rica which has historically had great influence over the Ministry of Education, especially before cochlear implants and hearing aids made listening and speaking a very realistic possibility for children with all degrees of hearing loss. As such, the public schools for the deaf in Costa Rica use what we would call a “Total Communication” approach, using LESCO (Costa Rican sign language) coupled with Spanish as their modes of instruction.
For parents who want their children to learn to listen and talk, there are 2 private preschools that provide listening and spoken language instruction (as well as integration with hearing children in a typical preschool setting) and private listening and spoken language therapist. There private programs are much more expensive than public education and, because there are fewer of them, they are less accessible to parents who desire this option.
Children with hearing loss who have learned to listen and talk are subsequently mainstreamed into public and private schools. There, they face problems of poor acoustics — classrooms are not carpeted and fans and open window add to the noise, as the schools do not have air conditioning.
WHAT IS BEING DONE?
The professionals who came to present at Fontbonne also are active in presenting a series of listening and spoken language workshops to educators in their home country. Though the ministry of public education has only total communication programs, organizations like Adis, combined with private listening and spoken language programs, are helping more and more children with hearing loss listen, speak, and succeed in the mainstream. Those examples, combined with workshops to raise consciousness about what is possible for today’s children with hearing loss, are slowly but surely changing attitudes about deafness and deaf education in Costa Rica.
Santa Paula University in Costa Rica has designed a cost-effective parent-infant program at their university clinic to provide groups of parents with deaf or hard-of-hearing children center-based listening and spoken language education in a natural, home-like environment
Kinder Papillon, one of the integrated listening and spoken language/typical preschool private centers has started a series of parent support groups. The presenters noted that BOTH mothers and fathers of their students are active in this group — how wonderful!
Groups of students in the master’s degree program in both Speech-Language Pathology and Early Intervention in Deaf Education from Fontbonne University conducted a Spring Break service trip to Costa Rica last year. During their time in CR, the students helped to build a listening and spoken language resource library, perform hearing screenings for children in early education programs (similar to Head Start in the US), visited schools for the deaf of various modalities around the country, gave lectures and conferences on early intervention, deaf education, and cochlear implants at various universities, and visited the ENT program at Hospital Mexico
GOALS FOR THE FUTURE
Establish universal newborn hearing screening for infants in Costa Rica
Increase research on cochlear implants and hearing loss treatment in Costa Rica and develop assessments in both Spanish and English
Increase the number of locations for therapy
Increase the number of listening and spoken language workshops, raise awareness of auditory-oral/auditory-verbal methods
Reach children with hearing loss in rural areas of Costa Rica
Collaborate with neighboring countries (Nicaragua, Panama, etc.) to provide listening and spoken language options for children in Central and South America
HOW CAN WE HELP?
Adis, the organization for listening and spoken language in Costa Rica, is in constant need of therapy materials, books in both English and Spanish, and information/books for parents on topics related to deafness, audiology, listening and spoken language, etc. Can you help bring the gift of listening and spoken language to the children of Costa Rica? CLICK HERE.
Before his son Samuel was diagnosed with cerebral palsy, photojournalist Dan Habib rarely thought about the inclusion of people with disabilities. Now he thinks about inclusion every day. Shot and produced over four years, Habib’s award-winning documentary film, Including Samuel, chronicles the Habib family’s efforts to include Samuel in every facet of their lives. The film honestly portrays his family’s hopes and struggles as well as the experiences of four other individuals with disabilities and their families. Including Samuel is a highly personal, passionately photographed film that captures the cultural and systemic barriers to inclusion.
“Including Samuel” will be broadcast on public television stations around the US this fall. Click HERE for a schedule. Until then, you can watch a 12 minute trailer for the film HERE. In keeping with the film’s theme of inclusion, it’s fully subtitled!
I finally had a chance to watch last week’s episode of Extreme Makeover: Home Edition, which featured a bilateral cochlear implant recipient (read more background info HERE and HERE). Though there wasn’t a whole lot of discussion of the implants on the show, what was said appeared very positive and factual to me — i.e. no false statement, incorrect facts, etc.
To paraphrase one exchange on the show:
Host: So you’ve got the ear things going on, right? What are they, hearing aids, or..?
Man: Cochlear implants. Three days after I got show, I got spinal meningitis which caused me to do deaf. With these implants, I’m able to hear.
One of the main themes of this episode was the homeowner’s desire to be able to be an active part of his family again — to be the husband and father he had been before the accident that took away his ability to walk and to hear. At the end of the show, he said something that nearly had me in tears, “I can be an active part of my family’s life again.”
… and isn’t that what it’s really all about. Assistive technology is just that — technology — it’s just a tool made up of batteries, cables, coils, MAPs, etc. On the surface, and impressive feat of engineering, but what really makes a CI, hearing aid, or any other ALD worthwhile is what it enables the user to do — be an ACTIVE part of the family, classroom, workplace, community. Late-deafened people like Carlton Martin, who know what they’re missing after losing a sense they’ve enjoyed for decades, teach us powerful lessons about the power of technology to connect (or re-connect) people with hearing loss, or any other disability, to the world.
Back in July, I blogged about an upcoming episode of the ABC television show “Extreme Home Makeover” that was being filmed about Carlton Marshall and his family. At the time, it was unclear when the episode was to air. Well, I just received an exciting update via the Cochlear Community. The episode of Extreme Home Makeover featuring Carlton Marshall, injured police officer and bilateral cochlear implant recipient, will air on ABC this Sunday (10/18/2009) at 8/7c. I can’t wait to see how they explain Mr. Marshall’s story, his cochlear implants, and what hearing-friendly modifications they’ll make to his new “extreme” house!
CLICK HERE TO VOTE!
UCLA Tailback Derrick Coleman — see the hearing aids!?!
