"Please come to Pakistan"
"Wouldn't it be great if you all could come to Pakistan," wrote Rabia, mother of Yashfeen. Rabia's small daughter is just a year old and newly identified with a profound hearing loss. The Bilal-Saifullah family lives in rural Pakistan. Like many parents in this situation, Rabia's search for resources on the internet led her to www.handsandvoices.org, and she contacted us for support. We've been "chatting" for a couple of months now. A synopsis of our email exchanges follows. When someone writes to us at Hands & Voices, we respond whenever we can with the strength of our network of families and professionals that sometimes expands across the U.S., and beyond. While it is not uncommon for us to hear from families or professionals far away, our U.S./Pakistani dialogue is a particularly poignant reminder of how much we do have in common in the midst of the geographical, cultural, and political distances between us.
From: Rabia Bilal, Pakistan/N.W.F.P
I am a distressed mom who recently found out that my daughter age 1 year is profoundly deaf. She is currently using behind the ear hearing aids and getting speech therapy. Since I happen to live in a rural area....I need a lot of information to help develop my daughter's speech and to improve her listening skills. I want her to live life to the fullest despite her disability. Please help and reply promptly. I shall be ever so grateful.
To: Rabia Bilal, Pakistan/N.W.F.P
Hello Rabia Bilal,
Thank you for contacting us at Hands & Voices. How long ago was your daughter identified with a hearing loss? Do you know much about the cause of her hearing loss? From the sound of your email, your goal appears to be for your daughter to develop her abilities to listen and speak. When my son was identified with a profound hearing loss at 18 months, we had similar goals. He made very little progress at all until he was four and half years old and we learned that he'd been under-amplified all that time. Once we got him fitted with more powerful hearing aids, he started gaining a lot of ground. But I deeply regret the time we lost because we weren't aware of what was causing the problem, and we depended on others to have all the answers for us. We should have asked more questions, and expected sooner & better results from our efforts and amplification equipment. I wish I could do it over, but since I cannot, I'll share that advice with you. EXPECT RESULTS and if you don't get them, ASK WHY!! Don't lower your expectations of her because she is deaf. Deafness does not affect a child's thinking/cognitive ability, and she's as capable as any hearing child.
If we can help you with support and encouragement, you can always count on that from us, Rabia.
With best wishes and high hopes for you and your girl,
Leeanne, another parent
Hands & Voices National
From: rabia saifullah
It felt wonderful to receive a reply from you.......imagine we are oceans apart and we can connect....parent to parent...mother to mother. So first of all thanks a lot for such an encouraging and supportive answer.
My daughter Yashfeen was born on 24th June 2003. We discovered her hearing loss recently....on 17th May 2004....she was 11 months old. I'm sure you know the feeling. My world came crashing down....I was devastated. Part of me still does not want to believe it....so I'm in that rotten stage of acceptance and denial. The audiologist diagnosed her cause as genetic. My husband and I are first cousins. And my uncle's daughter who is 26 years old now was also born deaf. At that time there was very little knowledge about speech therapy and hearing aids.....so my aunt and uncle went through a tough time. They set up a small school for the hearing impaired and sought help from an American qualified speech therapist. It's been almost two decades now...it's a non-gov't organization......and runs purely on charity. The teachers are all trained by American speech therapists and there is also an audiology section and a foreign qualified audiologist. My aunt has devoted herself totally to the cause and these children. Since it is situated in a rural area, most of the students can't afford hearing aids. When I got married, I settled in Mardan and started doing voluntary work at this Centre for Speech and Hearing. My first born is a son age 4 years and 6 months. He is a thriving, intelligent boy and goes to school. I never thought that my ever-smiling and cheerful baby Yashfeen was born deaf until now.
She was first fitted with a body aid, but wore it only a short while. We went to an Australian qualified audiologist in Karachi who recommended more powerful and expensive hearing aids. We are also considering a cochlear implant but the doctor who performs these surgeries suggested strongly that we make her wear hearing aids and do intensive speech therapy for at least 6 months before we go for the implant. And we are doing just that.
I would really appreciate it if you could guide me in speech therapy for one year olds. Although the speech therapists here have done amazingly well with kids here....I would still like some additional information. At the moment Yashfeen's speech therapy consists of the following:
Exposure to diff sounds (drum, rattles, flute, animal sounds with pictures) dropping a block in a box at the beat of the drum.
Babbling ( Ba ba , ma ma ma ma, Bee bee bee, bo bo bo, ka ka ka, ha ha ha)
Vowels ( Aaaaaaa, Eeeeeeeeee,Ayyyyyyyyy, Oooooooooooo)
Presenting and naming a items such as shoes, spoon, ball, milk, pencil.
Do you think this is the right approach? What all did you do with your son? Please help me....any information is valuable.
I'm sure you know how it feels. I'm terribly depressed these days. How did you feel when you first came to know and how did you cope with it? How long does it take to sink in?
Love and prayers
To: rabia saifullah
Don't despair!! You are entering a beautiful world with adventures you hadn't anticipated, but will come to fully appreciate because your daughter is deaf. I would not trade my son for a "hearing" version of himself, because he wouldn't be who he is...the young man I've come to love so profoundly because of the human being he is, and because of the joys he has brought into our lives.
Dane is now 17 years old, an honor student in our public school, a football linebacker, a varsity wrestler, and the catcher on his high school baseball team. He has won an award of merit for his strength of character, and he was chosen as 10th Grade Academic Renaissance Scholar by his high school last year. He was selected as a "Mile High Scholar" by the Mayor of our city of Denver, Colorado, several years ago. None of this happened because he is a genius, but because he is a good boy who must work hard to do well. His teachers and community leaders have recognized that and celebrated his accomplishments. We are grateful for this recognition, but it's just life as usual around our house. He is no different than any other kid except he's bright and he's deaf. His deafness makes him more compassionate of anyone who is being picked on or degraded by others. Because he learned to talk (he chose to get an implant at age 10) and sign both (he is fully bilingual), he bridges the hearing and deaf worlds beautifully. This summer he is a camp counselor for low income, inner-city kids. He will be taking them horseback riding, garden-planting, and play performing--all while teaching them how to sign (they are hearing kids). I'm so happy for him to have a leadership role like this, and I know that he will use these skills and the unique perspective he has as a deaf person to do important things in the world.
My grief at having a son with hearing loss still pains me at times--when I see him not being able to access the communication in the world around him because the "hearing world" can be awfully unyielding for someone who communicates differently. Hearing kids don't slow down enough to include him in all their fast-paced conversations, but there have been exceptional kids who are interested in sign language and/or see him as just another kid, not the "deaf" kid, and they connect over sports or cars. And we've always worked hard at ensuring that he has other deaf kids in his world, and deaf adults to mentor him. Through deaf adults who are successful role models for Dane, we've learned another whole aspect of the deaf experience that is so much more positive than the "clinical/"something's wrong with him" point of view. From our exposure to successful deaf adults (talking and signing modes), we've been able to show Dane that he needs to accept no limitations for himself.
I am not a speech therapist, but I do know some truly gifted ones, and I'm going to ask Dinah Beams to email you back directly with a response to your question about your daughter's early intervention services, ok? Expect an email from Dinah. She works professionally as an early intervention therapist specializing in deafness. She works with kids with cochlear implants, with kids who are using sign language, and everything in between. She knows all about speech development and the milestones you should be watching for in your daughter's development.
So don't despair, Rabia. We can help you, and we gladly will. You are not alone, and one day we will perhaps sit down at a Hands & Voices International conference together in an exotic location (let's say, Paris!) and over a cafe au lait and biscotti you will be telling me how wonderfully Yashfeen is doing, and what university she is applying to for her doctoral program.
FROM: Dinah L Beams
I am also on the board for Hands and Voices. Leeanne asked me to share some information with you. I am not a parent of a deaf child - but I have worked for many years with young deaf children and their families. Thank you so much for your inquiry about intervention services for your daughter. I will do my best to answer your questions. Please contact me again if I can give you more information. Since I have not met you or your daughter my answers may not fit exactly. I hope there is some information that is useful. I know that it is devastating to find out that your child has a hearing loss. There is so much to learn, so many decisions to make, and so many emotions to deal with.
First, I would like to respond that your physician is correct. Most physicians are recommending a 6 month trial period with hearing aids before a child is implanted. There are other criteria for the cochlear implant candidacy as well which I am sure that your doctor reviewed with you. If you have questions regarding implants there are several good websites. One which might be helpful is with the Clerc Center at Gallaudet. Here is the address:
Now I will try to answer some of your questions about intervention. Early intervention with a young deaf child consists of learning strategies to foster development in several important areas: communication, language development, auditory training, and speech. Other areas may be added depending on the needs of the individual child. It sounds like your therapist is working on each of these areas. After a child is fit with hearing aids a lot of therapy is required to help your child learn to listen. It will take much exposure to meaningful sound for her to learn how to listen and respond. Right now the focus should be on providing her with many opportunities to listen.
Auditory games are great fun. It is a good idea to pair sound with movement (example: holding her and swaying to music) - this will make listening more fun. You may also need to help her focus on listening by "cueing" her (pointing to your ear or to her ear). Turn-taking and imitation is also a good skill. She can learn to do this by playing babbling games with you where she makes a sound and you imitate her and then wait for her to take another turn by imitating you. Varying your intonation pattern or pitch will also make sound more interesting to her.
Communication begins as you share your love with Yashfeen. She will be motivated to communicate because she wants to connect with you. A child with a hearing loss needs more exposure to the world of sound than does a child who is hearing. Parents can play, talk, sing, laugh, point out sounds, and reward efforts to communicate. And of course, the more Yashfeen wears her hearing aids, the more opportunities she will have to listen.
Auditory skills develop over time. Yashfeen will have to wear her aids a lot and have many opportunities to listen over the next few months in order to determine how much benefit she receives from her aids. You can help by calling her attention to sounds in her environment and helping her attach meaning to those sounds. The first stage of auditory skill development is the sound awareness level. After that she will learn to localize sound and will learn that sound has meaning.
Here are a couple of resources which might be helpful:
Listening Games for Littles (book) by Dave Sindrey. This book has games and activities to teach listening to young children.
Wordplay Publications, www.wordplay.ca. This book is a little pricey (comes with a CD) but has good information.
John Tracy Clinic - they have a nice website. They also have a free correspondence course for parents.
Preschool Course (children 18 months - four years old) 12 lessons are mailed to you Baby course (for parents with children birth - 18 months old)
Raising Deaf Kids www.raisingdeafkids.org This website is from The Children's Hospital of Philadelphia. It has information on genetics, communication, hearing loss, etc.
www.babyhearing.org This website is from Boystown National Research Hospital in Nebraska. Nice website with lots of good information.
My Turn to Learn (book). This book will not be available until fall 2004. It is published by the Elks Family Hearing Center in British Columbia, Canada. This book focuses on how to develop communication with young deaf and hard of hearing children. It is written for parents and has wonderful information. I do not know how much the new edition will cost.
Please contact me if you have other questions. I wish you all the best,
Colorado Hearing Resource Coordinator (CO-Hear)
FROM: Rabia Saifullah
Thank you sooooooooo much for such a considerate reply. How can I convince you how valuable and precious every word of your advice is at this end of my world. Ever since I found out about Yashfeen's hearing loss at age 11 months........ I have been so depressed. Mostly it is because of the sheer feeling of helplessness. I happen to live in a remote rural area called Mardan. My husband and I have been married and living here for the past 7 years. I was brought up and did my schooling from Islamabad, the capital of Pakistan. Coming to the countryside and complete wilderness after living in a cosmopolitan city like Islamabad was like putting a fish out of water.
But let's not dwell on that because I realize your time is precious and I don't have words to tell you how obliged and grateful I am to you for extending such valuable help. It is as if I have breathed for the first time after the day I found out Yashfeen's deafness. I swallowed the lump in my throat and cleared my tearful eyes and read your email a dozen times. It is a light at the end of a dark tunnel.....a ray of hope that God has granted me in this lonesome part of the world. (I do not even have neighbours - just our house and fields all around us.)
My aunt, however, is doing a marvelous job by opening and running a nonprofit private charity school called The Centre for Speech and Hearing here in Mardan. This is the fruit of her struggle when a deaf daughter was born to her 26 years ago. Hundreds of deaf children are now benefiting from it. It is so ironic that I started helping out there voluntarily after my son Zain started nursery. Little did I know that when I was leaving every morning for the Deaf school I was leaving a deaf daughter behind in the care of a very good nanny.
I became friends with one of the speech therapists, Sajda, and she started coming over to help me study with Zain. It was Sajda who noticed that Yashfeen had turned 11 months old and was not babbling or responding to her name when she was called from behind. I observed her intently for two days and then I knew something was definitely wrong. So without any delay we got her tested on the 17 of May 2004. I will remember this day all my life!!! You might be surprised at how devastated I am, but trust me Dinah, there is very little knowledge and expertise here on deafness and speech therapy. I might not have felt so bad had I been in Colorado.
The same day we got the Brain stem auditory response test (ABR or BERA) it showed profound hearing loss (bilateral). Yashfeen was then taken to Iahore where cochlear implants are done by a doctor who comes with his team from U.K. His assistant audiologist, who decides on candidates for implants and post care, advised that before considering a cochlear implant, a child must be using hearing aids and getting intensive speech therapy for at least 6 months. If her decibels do not improve over this period or improve just a little bit and not more ....then she will be a candidate for implants. It's like building the foundations....doing the spade work. It made sense and that's what we are doing right now.
Yashfeen is wearing behind the ear hearing aids now. Two speech therapists work with her every day, morning and evening. She is not yet used to the hearing aids and keeps pulling them out. I am trying even though it's very difficult in my depressive state. Here is a summary of all that her speech therapy consists of......I will just describe the activity as I am not a specialist. Please Dinah, do comment on it and remember I am in desperate need for guidance.
Listening Practice involves.....playing the drum, piano, music....songs, rattles, squeaky toys, flute, showing a picture of a cat and saying miaaow !
Also playing all the above instruments at a distance and from behind, the goal being turning and responding to the source of the sound.
We play music and put her hands or feet on the speakers for her to feel the vibrations....we move a doll to the rhythm of the music and the stop the music and the doll's movements and tell Yashfeen....there is no sound. We do this quite a number of times.
We make her drop a piece of block in a tin container when the speech therapist gives the drum a beat. With every beat I help Yashfeen drop a block in the tin container.
I have individual photos of the family and we show them to her....telling her this is mama, this is baba (father) this is Zain (brother) this is Yashfeen and we put her finger on the photo and then on her chest so that she recognizes names.
We have an object box.....which for the time being contains a few objects which are shown to Yashfeen everyday without replacing them with others....the objects are.....a small ball, a spoon, a shoe, a pencil, a cup and a toy block. These are taken out or dropped in a box one at a time and the therapist puts Yashfeen's hand on her neck and says.....ball, for her to listen to the name and feel the vibration of vocal cords.
We take a puppet doll and make her move towards Yashfeen from short distance while pronouncing the vowel
sounds....aaaaaa....eeeeee....aaayyy....ooooo. and also babbling. All the time we face Yashfeen so that she looks at the movement of our mouth...we go....ba ba ba ba ......bee bee bee bee........ma ma ma ma........ka ka ka ka.....pa pa pa pa......bo bo bo bo
We play peekaboo game which she loves.....we put a scarf on her face and say where is Yashfeen? Then remove it saying peek-a-boo! She really likes this one. We put the scarf over our face and say peek-a-boo.
We show her flash cards of everyday objects .....like food, toothbrush....train engine, cat, dog, duck, car and the sounds they make.
Well I think that sums it up. Thanks for being so patient and reading it all the way. I will be waiting for your comments.....any modification.....or added activity or aspect which we are missing out on......please, do tell me.
Dinah, you are making a huge difference in the life of a child by communicating with me. I am very lucky to have you. God has been great.....He sent Leeanne......then you.....I always pray for Yashfeen and when I read your letter I felt my prayers had been answered. Thank you Dinah......really it is a GREAT help! I wish to build a strong rapport with you. I hope you don't mind. I am really helpless here. Very lonely and need support and direction.
So great to hear from you......
Love and regards and lots of prayers, your friend from across the oceans,
From: Dinah L Beams
To: Rabia S
I am more than happy to share any information that I can with you. Please keep the questions coming and I will do my best to answer them.
I do understand how overwhelming and devastating the news is when you find out your child has a hearing loss. I have been with many parents during the early days and weeks of this journey. As I said, I am not a parent of a deaf or hard of hearing child, but my brother is deaf and I do remember how that news turned the lives of my family upside down. You are doing a great job researching information and getting help for your daughter. She is young and that also makes a big difference.
Pulling the hearing aids off is a frustrating, but very normal stage. Almost all of the young children that I work with go through a time of pulling hearing aids off. A great website with some tips on how to keep hearing aids on young children is listenup.org. Mostly, though, it will require you persevering.
I will write more about therapy and intervention techniques tomorrow when I have more time.
Take care of yourself. Your little girl is very blessed to have a mother as involved as you are! You are in my prayers as well.
From: rabia saifullah
How are you? I hope you are enjoying good health.
Dinah sent me an e mail !!! can you believe that ?!!!! I am sooooo excited. I'm over the moon. It really is amazing. The world has such wonderful and caring people who do not care if they have met someone or know them..but extend their love and help on pure humanitarian grounds.
You have made a difference in a family's life across the globe..so selflessly. I wish I could some day comfort a mother the same way as you and Dinah comforted me.
I really feel different about Yashfeen now. I am able to look at the adorable child she is and the amount of happiness she gives me is no less than my older child Zain. And Zain too is growing more caring and helps Yashfeen by talking
to her and playing different instruments and peek a boo games.
Hello my friend Rabia,
I knew Dinah's response would help! She's amazing, and entirely devoted to her practice. We're so lucky to have her on our advisory board at Hands & Voices. I LOVE that we're all able to communicate like this from so far away on issues so close to our hearts as easily as if you were my neighbor across the street!
Tell us more about your Aunt's school! What does she do there?
From: rabia saifullah
How are you? I have some good news.
I had applied for Yashfeen¹s enrollment in The John Tracy Clinic. And they enrolled her!!!!! I was having a particularly lousy day Yashfeen had outgrown her moulds and we had to get her fitted with new ones. Then we made her take an audiology test with her hearing aids. The therapist and I were both shocked at her responses. Yashfeen did not respond to any frequency!! Whereas she is so receptive during speech therapy and turns her head to the slightest sounds of rattles and drum with her hearing aids on. I was so disturbed. I spoke to the audiologist in Karachi who has programmed her hearing aids. He reassured me that Yashfeen is not underamplified and I stood my ground.but he was right in a way because her hearing responses during speech therapy were very good. Still we decided on amplifying her on each of the frequencies by 5 dB. After that I have not gone for another test. I'm too scared.
The only thing that lifted my spirits that day was when I came home I found the John Tracy envelopes.
Love and regards,
From: "Johnson, Cheryl"
The internet has truly opened the doors of the world to us. I marvel at the ease of communication around the world. I am also on the Advisory Board of Hands & Voices and can give you some feedback on your audiology questions.
I will add just a few comments about your daughter's responses with the new hearing aids. It is my experience that it often takes some time to see the same level of response with new hearing aids. People develop a reference for how they hear - new hearing aids, especially with some of the new electronic features, can dramatically alter how things sound to her, so much so that it may take a while to adjust to recognizing sounds she heard before with how they now sound through the new hearing aids. This can take up to 2 months in a young child. Having "no response" is not typical so you should continue to work with your audiologist to monitor her responses even though it might be a little unsettling for you. Some other things you might try: put the old hearing aids on and see if her previous level of auditory responses comes back. If so it could mean that the new ones are malfunctioning or not set appropriately--keep a detailed log of her responses to sound with the hearing aids. Look at how she response when she is close to you versus at a distance, when she is watching you versus when she is not, when it is noisy versus when it is quiet. Be as systematic as possible.
I am attaching a form that you can complete to monitor her listening skills. instead of FM you can use it to compare one aid versus the other. You can do it once with her old hearing aids and then again with her new ones.
I hope this is helpful and the best of luck to you.
Cheryl DeConde Johnson, PhD CCC-A
President, Hands & Voices National Board of Directors and Consultant, Colorado Department of Education
From: rabia saifullah
To: Cheryl Johnson and Leeanne Seaver
Subject: Rabia again
Hi Leeanne and Cheryl,
You have such a supportive, dedicated and wonderful team. Wouldn't it be great if you, Leeanne, Dinah and Cheryl Johnson could come to Pakistan and visit our school.
Please, please, think about it. And I will get the chance to meet all of you, and of course you all will stay in my house. It would be a dream come true.
It would be great to have you all here including Janet. The more, the merrier. I feel as if I have an extended family--all of the Hands and Voices team. I can't help feeling a part of it.
Thanks for inquiring about the school. It is registered by the name of THE CENTRE FOR SPEECH and HEARING. It was set up in 1983 by my aunt and uncle who had a deaf daughter born in 1979. With very little finances and a lot of devotion and perseverance they started this school with the help of an American speech therapist, Terry, it is a private organization and runs purely on charity. My aunt is an amazing woman. In a rural town like Mardan which is a male dominated area--women have to observe pardah--The Veil. She did it while observing pardah and the norms of our culture, most of which are ridiculous and absurd.
Now it is a full fledged school. It offers formal education to 300 students starting from class play group to 8th grade. They have an audiology section and an outpatient department. Other people can avail these facilities which include hearing tests, free hearing aids to the poor, speech therapy for the deaf and therapy for other behavioral problems like stammering, paralysis, Attention Deficit Disorder, learning disabilities, nasal speech, autism and counsels hundreds of parents--most of whom are illiterate and just don't know anything about deafness.
The school provides free services to the poor so it is mostly in need of monetary help or hearing aids. I have taught the children in playgroup (voluntarily) and I have learned, sadly, that most of the students lag behind due to finances and sheer negligence of the parents.
The school would greatly benefit from any kind of help you can offer--if not financial, then videotapes (on any topic), art and craft equipment for the nursery section. Here's another idea. We also have a sponsor program where you can sponsor a child who cannot afford continuing their education because of lack of funds. The cost of one child for a month adds up to Rs 1500 (25 dollars) and this too can be split amongst three to four donors. And it is up to the sponsors/donors to pay this amount monthly/quarterly, every six months, or annually. Most of our much needed funds come through this program. If you are interested in any of the above ways, I can also give you the school's bank account number. And please give me your land mailing address so that I can forward the school's brochures and any other information I can get my hands on.
Here is the school's address:
THE CENTRE for SPEECH and HEARING
sector A, street 1
Sheikh Maltoon Town
If someone wanted to provide money to sponsor a student, here is the school's account information. An officer at your banking institution could help with a direct transfer of funds, which is the only way to assure the money reaches the school:
Foreign Account number ...( Contact HV for more info )
Thanks so much, Hands & Voices!
Thanks for giving me the info on the school, and for the update on Yashfeen. I would love to share this information with all our Hands & Voices' membership. Maybe we can recruit some student sponsors from among our ranks! Would you allow me to share some of our emails as an article in our next newsletter, the fall 2004 issue of The Communicator? I can use a false name to protect your privacy, if you like. Ready to be famous?
You are absolutely right. I would prefer it if I stick to my identity and nationality. Just like you have me as a friend. I'm sure there will be many other such friendships that overlook all boundaries of religion, race, color, or sex.
Write my name in bold, I don't mind one bit. It will give much more impact to your article and what matters to me is not being famous but sending the message across... LIVE AND LET LIVE! Make friends with people across the globe. What more can I ask for than to have a heart that cares for me thousands of miles away?