Showing posts with label hearing loss. Show all posts
Showing posts with label hearing loss. Show all posts

Tuesday, July 9, 2019

Parent reaches out through YouTube


I don’t know how to react when a distressed parent reaches out. Should I be happy or sad.... as it hurts still to know that there is a child who will begin a journey I already am on and happy that in this big world they found me for a support that I can extend. It’s always a journey I relive each time I have a new parent who reaches out. Today was just like that! A mum reaches out just as I finished lunch and settled down to read on a cold day. I planned to snuggle in with my online reading. A lady messaged on messenger and for some odd reason I quickly respond. Her month old baby is deaf and she is desperate for help. Before I ask her for details I asked how she knows about me. Her response gave me a bit of comfort as I wonder at times if all my online work is of any help to anyone. She was looking for deafness on YouTube and found our videos!! She called up and we spoke for over 2 hours! I was pleasantly surprised to know that she has nearly seen every video I have put on YouTube since the last month!! Each time I told her about a technique or incident ....she said she saw it and she completed what I had to say!! I was appalled to say the least!! She has been in various support groups and updated herself in the last one month through every way and she was inspired and motivated by our story so much so that she was ready to fly to Jakarta to meet me!! I am humbled and yet so happy that she has found ma’am to guide her through her videos and I can help her till she needs us! Just a month of being a mum has been so difficult and yet this mum is brave to fight odds for her baby! I feel so positive about this family and I pray and hope that we are able to give her that hope and direction in this world till she learns her way, gets steady and finds her wings to fly like many other mums. As I turned ready eyed at a few moments...I recalled my journey and felt grateful for all that I updated online so that some desperate mother somewhere can find help just the way I did 14 years ago! Each of these kids has been special and each mother taught me and motivated me to never stop writing and sharing my journey through their ways. She is in a place and country where she has all the support imaginable and all facilities....yet she found our journey worth listening to. What more can I say.....thank you Ma Alaka Hudlikar. Here is to you!! There is no mentor like you anywhere in the world. I am blessed and a chosen one to be your student.  

Tuesday, January 8, 2019

Our story till now

Together we can and we will. 

 A7000 words long story of my life with Prisha... this was a write done for a US based website “Deaf and Hard of hearing”. It was quite an emotional one and I could only share few events of my life. Since then I have completed quite a lot...few talks and workshops. Sharing the unedited version sent few months ago. 

Would you mind sharing with us a brief bio about you and your daughter? Include where you from, when and how your daughter lost her hearing, her primary mode of communication, if she/you know any sign, etc. and anything else you would like to add.

     My name is Ruchi Goyal and I have a 22 year old son (with normal hearing) and a 14 year old daughter with severe to profound deafness in both ears.We are from India and have lived in Germany and now live in Indonesia. After having an amazing time bringing up my son, I wished to complete my family with another child. My son too craved for a sibling and wished for a baby girl too…that way he wouldn't have to share his toy cars! Inside of my heart I wished for a little girl with dimples and curly hair, my weakness being little girls since my childhood.When my son was about to be 7, I realised I was expecting again, she came into our lives after many prayers and wishes! It was very exciting time as I had lost a baby to a miscarriage just about a year ago and she was a dream come true. Yet I was very fearful all through my pregnancy as the past 1.5 years were pretty traumatic in my family from my parents side. My youngest sister had delivered an Albino daughter 1.5 years ago and my middle sister had a daughter with Down Syndrome. My entire pregnancy was shrouded in that fear and I kept praying for a normal child. 
    
    Soon she was born and sure enough, she had thick curls at the time of birth and two dimples! My daughter looked normal too. The fear and jinx in my family was perhaps broken. Our joy knew no bounds. I sang and danced all those day with the picture of a complete family! I took my time to find a suitable name as she was born after many prayers. After much research I found the name “Prisha” which meant beloved God’s gift ! And yes gift she was! 

      A few months later my husband’s sister visited us and she felt Prisha wasn’t hearing. I kept denying thinking my sister in law was dreaming! She kept persisting as she had two nieces in her husband’s family who were deaf. We had moved a city just a few months before and were in the process of settling. I was already overwhelmed and to it this suspicion was truly ungainly. One afternoon as Prisha and I slept after lunch on the rug in the living room of my mother in laws home, I was woken up by a bell ringing near my face. I looked up and found my sister in law ringing one, it woke me up from my slumber in both ways! My precious gift was still asleep! Before I realised, I was soon looking into numbers of an audiologist referred by the doctor. We called her up and she said her BERA test equipments were not working! I for sure said that this was a signal from God that my daughter was just fine. I kept testing her meanwhile and found her inconsistent in her responses. A month later we finally went to another audiologist and got her tested. I still remember that horrible feeling when she was sedated and we sat in the clinic for her test results. We kept looking for signs on the audiologist’s face to find traces of encouraging news. Sadly….she didn't have any! Prisha was born with a severe to profound deafness in both ears. She has a sensorineural loss and would require hearing aids! My world came crashing down with the knowledge that all those songs and chatter had been falling on “ deaf ears” literally! We had no idea why and how but we just knew she was born deaf. I just wanted to die with her and my arms yet I had an amazing son to take care too! We got it retested and found same results. We were soon directed to an audiologist in Pune, India who would begin our journey into the new world of sounds!

    Mrs M prescribed a set of hearing aids from Siemens and advised speech therapy twice a week with her. We thought it would just be a few classes and then we are all good. In India sadly, back then they gave only limited knowledge about the subject. Internet wasn’t that evolved, yet we looked for help online….nothing there! I knew I wanted her to talk, sing and dance just like every little girl should! Yet the audiologist wasn't sure Prisha would ever be able to say her name and advised to change it! My heart broke many times as we dealt with financial crunch, lack of support, advise and  any direction. I cried many nights wondering what I would do with this little baby in my arms, would she ever speak/ how I would raise her and where she would go. The speech therapy with Mrs. M seemed completely trash, I didn't know what was right, yet I knew what her speech therapy taught wasn't going to ever make my child speak. 

    Few months later I came across a teen deaf girl arguing with her mum in this clinic. My hubby asked her mum about details and she pressed a piece of paper with a number that would change our lives forever. She said that if your wife could handle Mrs. Alaka Hudlikar for 3-4 years, your life would change. She is a tough task master and not easy to handle. Yet with a little ray of hope I soon found myself heading towards Mrs. Alaka Hudlikar’s home where I found an old lady teaching 4 kids of different ages. They sat in front of her on the rug while she talked to them in the local language. I was surprised to find all the kids talking to her so well yet I wasn't as excited as I wanted to get classes in English! Yet as destiny would have it, I was soon undergoing speech therapy classes under her guidance twice a week in English. I turned up at her door with my little 1 year old and she was the youngest of the 3 older kids. I would sit and watch her teach the kids and try to figure out all her methods. She was a 70 year old lady trained under a master in Mumbai in an institute which no longer existed. I soon realised she was one of the best AVT trained teacher and a speech pathologist who practiced at her home. She did not advertise but her students came through word of mouth. Her therapy included us to train ourselves under her AVT ( Auditory Verbal Therapy) program which enabled us to teach our kids further. She taught us 2 days a week at a paltry sum of 5$ a month while others charged that much for an hour!! For the kind of therapy we got…It was nearly free!!She did so as she wanted everyone to be able to afford her and would not differentiate between rich and poor and urban or rural. Everyone learnt in batches and all were equal. her therapy was never confined in a room or through books. She used the environment around her to teach language used everyday. We learnt language in her kitchen, garden, temple, market, playground, bathroom and she devised many such activities which trained the brain to listen to softer and softer sounds. Her techniques are so unique that I yet have to find any speech therapist who teaches this way. I can say that as I blog since years and so many mums exchanged notes and told me the same. Prisha learnt to blabber and pick up all the sounds she was hearing and soon I was heading for a miracle of speech. She truly is a miracle in my life and that too so close to my home. Miracle? Yes it was and continues to be so!

    Since we spent the maximum time with them as mums, we had to learn the right way of speaking with them so as to make them hear and speak better. The emphasis was on listening and comprehension in the initial stages and not focus on speech. It would follow once we taught them the right skills to listening. There was no sign of lip reading or sign language. I believed her and knew if there is anyone who could help me reach my child, it was her! If there is anyone who could help her do all the things girls do, it was her as all her kids in 40 years were going to normal schools and had been following normal lives and professions. She was a toughie and nothing was impossible for her. Her classes were tough as she came down on us if we did not follow instructions and advise! I still remember going one day with Prisha in my arms with high fever. She did not like what I was doing in her class and she asked me to leave! To me that was absolutely a no no. Each lesson with her was precious and priceless and worth every heartache and tears. I stood outside as she looked visibly upset and me with Prisha in my arms, stood outside her class and listened to her lessons. Its happened many times when I faced this and yet I would never miss even 5 mins. Going there in initial years were like following a military regime. It broke me inside into tatters initially and built me up soon into an avatar that would change my course of life forever. She did this out of perfection and our good. She broke our egos and wrong habits to help us follow a path of success faster. I realised over the years that it was for our good. Infant I do the same now….as without sincerity and dedication, it doesn't work.

   Twice a week in all reasons and seasons, I trained with dedication and stood by through a very difficult phase of life.  I held myself, my son and family and a deaf daughter through just too much. Beginning was with a bad audiologist who cheated us constantly. From selling us wrong hearing aids( we had to buy higher power ones within a year!) to programming her hearing aids with less gain so that she cannot hear and speak, she stopped at nothing. Selling us used batteries, wrong tubes and bad services were just to name a few. To top this a strict, hard to please perfectionist teacher and a home and son to take care of. My life only centred around her speech therapy the entire day and besides that I had no other life. I lived in my pyjamas and looked mostly unkept. Precious time was going by and I could not waste any moments to develop speech. In a year, I saw she was carrying out instructions while I spoke without looking at my face, she soon started to vocalise and soon enough our life was coming on track. I took down audios, notes and videos to keep myself on track and documented all that I was doing with her. Everything else in my life took a back seat but then it was totally worth it! In India , close to my home, to find the world’s best help….it was nothing short of a miracle. I had found my mentor, my guide, my life! She had changed my life forever. 

     Since we practiced AVT which meant developing speech through listening, there was never focus on signs or lip reading. In the initial years, we used techniques wherein everything was supported only to develop the listening skills. Lip reading , exaggerated speech, actions, touch, visuals were used to aid and support her to listen and soon she was dependent on her hearing and started to speak. Sign language was never an option as with the number of sign languages in the world, it would be hard to choose. I did not want her to limit herself to a state or country but empower her with a universal language and hence the choice was English. I too would have required many years to acquire and master signs and around us I never saw anyone who knew it.It could be isolating and hence we chose a tougher path,we chose the language of the masses and the world as I wanted to prepare her for the world where she is independent and free to do what she wanted. For that English was a perfect choice. I am glad we did so as we have moved 3 countries, 6 schools due to our various job changes and we never had issues getting her into normal schools and the other cultural activities. She is completely auditory verbal!


How has having a deaf/hard of hearing child changed your life/altered the way you interact with others? What aspects of your life, if any, have been enhanced because of it? What are some of the most important lessons you’ve learned from your daughter? 

    Having seen two disabilities and the complexities that came with it ,wasn’t easy to digest. The fear, anxiety and insecurity one feels are much higher when you are facing it as a parent. The responsibilities seem to suddenly get enlarged and the home is filled with more conflicts. The future seemed unsure, insecure and very difficult. Yet we knew that we have to take care of this child who was totally dependent on us for everything. Finding the right help in the material world is one of the biggest challenges. Everything centres around money and that became our sore point. I realised that to be able to afford her hearing aids, we needed to earn more as I was a stay at home parent. They were expensive and the therapy and supplies for hearing aids and services had to be taken care of. We never looked around for support but the pressure on my husband did increase. Our life changed, its narrative had changed and our world centred around only her needs. My life was centred around increasing her language skills and building her vocabulary. My interactions with others changed to just this. If we went to some occasion or to meet someone, I was still teaching Prisha the vocabulary around that event. Naturally we found ourselves isolated from many events and places. The entire day spent talking to her meant, tireless , endless hours on her and no time for myself. Talking to friends became a rarity. My circle now only had those who understood our needs and accepted the baggage that came with us. In fact the entire family turned into speech therapist and everyone’s focus became her. My husband moved to Europe in pursuit of a better job while my son and I compromised on much to just support her with language all our waking hours. 

    My interest in life changed. No more interest in shopping and mindless lunches and dinners unless it supported our needs. I exposed her to all the areas but people had to accept me talking to her more than chatting them up as the need to fill her up was much more important. Suddenly I started to see life differently where meaning in life was about helping and supporting those who were through the same issues. The depressions, suicidal thoughts, insecurities, fears and tears of those like me were more important than other things. I started to reach out to mums and exchanged ideas. Having seen the difficulties through the initial years made me realise the need to document my journey for others. Time was going by, I would forget it all. Hence the need to start blogging became crucial and a friend helped me open the blog to help others find support. I found a miracle but not everyone was so lucky and I wanted to share my miracle with others. I would spend time talking to new mums on phones, even at my cost most times, and less time watching others have fun on occasions or joining events that lacked a purpose.I found meaning in life as I realised its easy to live an empty life and go from this planet. Its important to have a more fulfilling life by leaving few traces of goodness, however small. Their tears and fears became my purpose slowly. When they talked in gratitude, it became my fuel to do more. I spent hours writing, uploading videos of therapy ( those days it took very long to upload) and counselling. I had substance in life eventually and it was not to please anyone anymore, it was about holding someone’s hand and pulling them to the shore. I too learnt from these exchange of conversations/sessions as I revised what I was telling them, solved their problems and that became my voice. I found new pathways and techniques. It built me up as a person as well. My confidence that had gone down due to staying home, suddenly found a purpose and a platform. My voice changed as did my thinking. I could talk about my subject with reference and context and I had an example in Prisha to narrate. She became my field of practice and experiment soon and in every success and failure with her I discovered myself. It was a lonely and scary journey with shots in dark but having the backing of my mentor Mrs. Hudlikar, I knew I can make it. I found my tribe and community that loved me for what I am and supported and rooted for me. It became a highlight in my life. My writing skills improved and I was no more fearful of others and life. I talked with conviction and sincerity and I found lot of respect, love and acceptance from society eventually. So much so that now working with Prisha has made me realise that if you work with your heart, soul and conviction, there is nothing that you cannot achieve. Its come as a blessing in my life and these two are my angels.

    With very limited access to help ,support and technology, we were looking at speech and language. But with dedication and belief and support of ma’am, we could push our limits and looked at music and dance as well. The initial years are tough but if you work with your heart and do it as best as you can, you can achieve everything you want. One main lesson I learnt is to be a learner always. If I think I know it all and have an ego, I shall never learn. Every stage of life we will  have to deal with our egos, bend it and unlearn and we have to do so that we can learn and evolve again. We can be our own enemy and hence we have to always keep working towards our goal. Times will test and break us, but we can never give up as thats not the best choice. I also learnt that I need to grow up with Prisha with her journey. I have to learn as she is learning and she became my teacher. Ma’am and Prisha taught me new ways to fail, learn and work. They gave me pathways and I devised various ways to become a better mum and teacher. I learnt patience and yet impatience as well. Patience kept me working and impatience taught me to keep working and never be satisfied. I also learnt that I should trust my gut feeling and trust myself much more. Never to question my work ethics unless I am being lazy and its ok to take  break as well. I realised I have to depend solely on myself and not to depend on others to understand or support. If they do, its great otherwise its our lone journey with our child, so live it and expect less from others. I learnt to enjoy little things in life as I learnt to see through her eyes! Everything was new and new perspective and new visions are exciting! We got excited over little things and rejoiced little things which we otherwise miss as our expectations are much higher. We learnt to be happy and childlike again. Life was beautiful with all imperfections, irregularities, isolations and uncertainties.

How has your daughter grown to accept and embrace her hearing loss? How have you helped her along the way and what were the biggest challenges?

     Its never easy to bring up a child with any disability. I believe that each day one has to keep working on building up the child which would be facing a lot of rejection, glances and doubts from the world around. As a parent your heart breaks each time their hearts break or they come home feeling lost. Bringing up a child like Prisha wasn’t easy. I wanted her to be strong and spirited always and thankfully she grew up very positive and strong. I never believed in hiding the reality, it was nothing to be shameful for. Every person is born with abilities and drawbacks. We have to learn to build on what we are given . I talked a lot to her from the time she started wearing her hearing aids. I made her responsible for herself early, handling the aids, asking others to repeat when she did not understand and basically had a lot of long conversations about deafness, her strengths, weaknesses, other disabilities in the world. I took her to a deaf and mute school in India when she was just 6 or so. She saw how they used sign language and I think she realised how my push and being firm about her development was for her good. Showing her people signing in Germany was a wake up up call for her for the first time. She was 7 or so and I had being a bit nasty with her the previous night for her bad speech. Seeing them sign she hugged me and said…”mumma, pls be more firm with me but make me speak , I want to hear my voice”. I had tears many times yet I let them flow into my chest. I kept a firm face as my weakness could become hers. For her I had to put up a strong front.She does say she would love to wake up to hearing ears and wishes for a miracle some day but she knows and isn't ashamed of being deaf. To me that is a big strength. I have had long unending conversations with her, her class mates and have gone around speaking about hearing loss everywhere I can. She has grown up seeing me stand for this cause and that helped. I took her to seminars and talks and she was my living example and that helped her build her self confidence and accept her disability. We got featured in the National magazine “Femina” in India in 2008 as women achievers and they were amazed with her spirit. We don't look sad and unhappy but yes struggle continues…albeit with smiles and tears. Its an everyday climb and many steps forward and few backwards.
     
    There has not been a dearth of challenges. Last 14 years have had many tears, frustrations, disappointments, struggles and roadblocks. We have moved schools, countries and cities. Faced with so many places is challenging for normal kids, for her it was tougher. Biggest struggle has been to find audiologists who are compassionate and believe in the right. Except in Germany, we found no place where I can trust or believe them. The services provided by them is so poor, specially when I see in India and now in Indonesia. I wish at time we could move back to Germany as there we struggle to get even little things without a fight which is our right. Lack of knowledge, and latest technology, services being poor and money driven motives are hard to deal with. Life would be simpler if we moved to a developed country and specially one that has English as its native language. She needs to be constantly in an environment surrounded by good language. Sadly we are in a country now that has very poor English around plus the infra structure isn't conducive to her and hence she suffers. Regression is faster and she needs constant support of positive environment which is tough to provide as a single support. Yet we try hard and I am constantly around her to correct, teach, support, counsel and nurse. She has faced bullying and it wasn't easy  dealing with it. In the developed countries (the west) the acceptance of disabilities is much higher and they also provide great services without the parents needing to worry. I wish many times, we could move to a country where my child would get the best as she is very deserving. We have worked very hard without any break and its exhausting. Kids don't accept her easily due to her inability to know only English. Moving to various places means she had issues making friends. Finances too are a challenge as hearing aids are expensive. The next one I am looking at is 7,000 $! I am a stay at home mum and do pro bono work to spread awareness. Hence money is always a big thing on my mind. People around including family can be a challenge when it comes to supporting her language development. I am a toughie with her as thats the way I could get speech out. Most of the time I stand alone correcting and helping her and most around us pamper or pity her. I have faced a lot of isolation, depression, dislike and rebuke for being a strict mum. I never had the time or liberty to be a mum who could just let it be. And this job continues even today. Without a break I am around supporting all her needs and have to build her up all the time.I get exhausted being her speech therapist, mother, nurse, counsellor, friend and her friend. Challenges never seem to end as every bit of the way from choosing the right hearing aids ,to speech correction, to helping her with her dances, to counselling her when she is depressed, to teaching her skills, to helping her cope with changes in life….I am omnipresent. I have to fill in for lack of hearing by being louder. Be it in noisy places, lack of English speaking environment or in times of badly programmed aids. Language input of full sentences, correct sequences and right pronunciation has to be constant.Isn’t that hard? I wish we could move where life was easier for her and us and we could help her build her confidence much higher. Yet we hang on as life is like that and we make the most of what we have.

What inspired you to begin blogging about your daughter’s experiences? How did you come up with the name, Impaired but Empowered? What would you say the blog’s purpose or theme is? What was the reaction from readers like? Also, what made you continue blogging for the last 11 years?

    Once Prisha started to respond to the therapy, I felt the need to spread a word about it. Since we had faced so many problems to find help anywhere , I felt there was a strong need for us to draw attention and make others aware that deafness isn't the end.I also saw 2 little girls who came for therapy with Cochlear implants that were done badly. The twitching in one girl and their inability to get the implants right hurt me. Worse was that implanted badly, they had no right speech therapy as well. If the speech therapy is good, we can develop language with any device. My mentor was teaching poor kids who developed clear speech even with pocket models! The best and the latest in the world could not help these girls. This was my epiphany. They inspired me to talk against the malpractices and talk about the right! I knew I wanted to document, how….was the big question. I was already maintaining a diary where I was writing all my notes and learning at class. As I was wondering where and what, I came across a person who did a lot of work in writing, dramatics, voice overs etc. One evening with no expectations in mind I met Deepak Morris. He told me about blogging. I was never a writer but just did think a lot. This proposal got me a bit scared as internet wasn't such a happening thing and going online was a scary thought. People knowing you and you writing against it etc….I was nervous. He sat me down and since I had no idea of it all, he made a simple blog for me. And yes….this name was given by him as he felt it suited what he saw in our story. I cant be more grateful as that changed my life. Afraid at first, I started to write under a fake name and soon developed confidence to come forward with my name. The rest as they say is history! Its been nearly 12 years now of writing!

    Why a blog? I always feel that mothers make great story tellers. And also listening to the real stories from the source has the real feel and emotion as compared to a professional. I felt the need to write my story and journey in simple terms….just the way I feel them. No jargon, no big words and concept but I wanted the story to unveil the way I lived it. The follower should grow as I grew and can identify with what I was saying. Professionals often lack that “feel” and compassion or should I say the real experience. Unless you live it, you don't feel it and you don't say it well. Purpose was to connect with mothers who can identify and grow with me through my journey and its wonderful that over the years many wrote to me and they identified with my writing style and feelings. I barely ever edited or read my blog posts. I wrote them as the thoughts came, however tough it was, to keep the flow and feel going. And that worked! Mistakes of grammar and spellings was never a thought….mothers like me would understand! I have many mums over the years who have benefited, sadly few left comments or feedback but for me what was enough that they got help and they loved reading my posts which inspired them to work with their kids positively. Later years I started to post videos of speech therapy on my youtube channel so although they could benefit from the way ma’am taught. Her techniques are not dependent on classes…they can be practiced anywhere once the techniques are shared. I have over 250 videos to share what I learnt and I am so glad so many parents and teachers benefited. My dream came true in small measures and I am happy to support this forever,. Whats important is that all deaf kids develop speech and language, I have been that desperate mum looking for help and that motivates me enough to keep posting and writing. There could be that one mum like me who is seeking help….she should find me and hence however hard it was, I had gaps but I never left writing and posting. Through this blog I not only met so many parents who seemed help and support but also met fellow bloggers who inspired and motivated me. My world grew larger and more aware. I also found that I have the entire documentation of my journey with a deaf child. I look back into it and memories come flooding in. I laugh, cry and get motivated by it. In times of low feelings when we are stuck into situations, this blog helps me to believe in my work and get back right up. Its a self motivating pill that I have. I don't need a counsellor,I never had one besides my mentor, nor do I need a venting place. Its the place where I meet myself and lose myself and find myself each time. It has given me my identity and I don't have to speak….it speaks for me. I am so grateful I hung on all these years, its my life. Some day I hope to write a book about my journey and this blog would be wonderful help besides my diaries that are hand written. I have now a page on Facebook, as its more acceptable and reachable, by the same name and that helps me spread out more.

I notice that on your blog, you mention the two of you having a love for the arts. How has this passion affected your lives, the way you communicate, the way you bond, your blog, etc. 

   Speech therapy was a very tough journey initially. Helping Prisha make sense of all the “noise” and turn into sounds was challenging. What was sound to me was noise to her, It hurt her and she loved her silent world. She threw out her hearing aids, had headaches and had no motivation to wear them. The pressures of early years were so high that I was breaking a lot. The house to take care of, a young adolescent son, full family, finances etc were very tough on me. The speech therapy lessons were taught under a lot of pressures and that used to make Prisha and me cry a lot. The firm strict mum in me would be bringing down hell constantly. It could be very tough on year old child. I knew it though that this style was good for her. I had to frustrate her till she spoke up and that wasn't easy. At this point, we introduced art to her to calm her brain that was overloaded. My sister in law, Vashima ,introduced Reggio Emilia inspired ways to me about learning. I am an eager learner and started to pick up tips and tricks she gave me. I started to work on projects from waste material around us with her. Her first art work went back at around 1.5 to 2 years when she barely could hold a pencil straight. She was given a camera to shoot pics. She drew, coloured and painted as I would sit by her and show her techniques to do all art and craft. I would direct her to look at the techniques as I spoke and that way she wasn't lip reading. Her ears were truly “ listening” and her eyes and mind followed two arts….one of colors and design and the other of language. I was teaching her two things at one go. I would discuss, push her to think, imagine and create things from waste and if she was stuck we went around looking for solutions around the house for them. Hence she became a problem solver as she had to identify and rectify the problem. I was just the facilitator. That changed our equation as we did so much of exciting art work over the years.She has her entire room filled with so much stuff that she collects. Nothing is wasted and she makes complicated art and craft and we have to spend very little on buying as she loves recycling and up cycling stuff. She had her bags, arms and life full of art and waste material that she can use. She painted and coloured every thing that she could think of including her grand father who was a happy canvas for her. Often she and he were coloured with colors that took days to wear off. We spoke about things around us and then translated them into art. We took pictures constantly and we discuss how we can better it. Today her skills in photography and art are at an advanced levels. I encourage her as much as I can and am her biggest critic. I don't accept things easily and keep showing her areas to work on and she may frustrate yet she would comply as she knows I mean well. In times she gives up I sit and tell her my reasons as the world outside shall not praise just ordinary stuff. She has to develop a keen eye. That has made our bond very strong and she depends on me for the right advise and feedback. She has learnt to be independent as I discuss to help, I don't do her work. She wants to be an artist and now in an amazing American school last 6 months, she is blossoming and they love and encourage what we do. Art has given us an eye for beauty, finding happiness in little things, ways to bond and hopefully a career in the future for her. She aspires to study in an American university and hopes to go to US for it. I can only support her cause and dream and the rest of course is destiny. Blogging has given us a platform to showcase what she does and we are able to reach out through it. She has learnt art, craft, dance, keyboard and photography and we put it up all there for others to be inspired. She is extremely creative and the techniques I used in her early years have made her a great problem solver, artistic and developed a very keen eye for detail. In fact I helped her open her blog when she was 7 as well! She writes there and I never interfere as I want her to see her own growth in writing and skill development in years to come. She has a tiny diary I gifted her where she writes since she was 7. Her blogging journey started from there and I am so happy to see it slowly grow. We often discuss the blog posts and she follows mine and gets inspired to write hers of course with push from me. I am her closest friend, guide or mentor and that helps her to believe and listen to me more. We have a lot of discussions about various things and she now comes up with great ideas. We keep documenting such things constantly. I think journaling is very important for every one as it can become your source of joy and inspiration for yourself and maybe for someone else.


How has this journey shaped my life? What do I do now?


    Blogging and sharing my journey online has given me wings and confidence like no other though I have a degree in Hotel management which I could not use for very long. After successfully opening a blog and seeing Prisha grow I started to support mothers of deaf kids. I would share my journey and counsel and give them hope. Soon I was doing Skype calls and helping the parents. I started to give awareness talks in her classroom each year so that the kids and teachers would understand deafness better and help anyone know that deaf can talk. The lack of awareness about the relation between deafness, language development and intelligence was high. Hence the need to talk about it. The success of it gave me confidence to start talking more about it in groups where they were open to listening to what I had to say. I became a substitute teacher at Frankfurt international school and worked for art and learning support. I realised my potential there and when we moved to Indonesia, I wanted to extend more support there as there were lack of facilities and services. I contacted hearing aid companies, organisations and schools. It got me lot of invites to give talks on deafness, disabilities and child related issues.I attend seminars and am regular invitee by some very prominent government organisations around in Indonesia to talk on disabilities, inclusion of disabilities, early intervention etc. I visit preschools and hold workshops for parents and teachers on early intervention and their role in early years as I believe we need to empower them on the importance of the 5 golden years of early childhood. I also teach photography and art techniques to kids for them to develop eye for detail. I started a volunteer group for a special school in Jakarta to support not only the school but help stay at home mums with so many capabilities to give few hours of their free time to provide a win win situation for both. I also have support groups on Whats app where parents send videos of kids and I correct their speech and give advise on all aspects of language development. Besides that a support group on Facebook connects many parents across the world. In future I have two very prominent international seminars I am invited to talk by the Ministry of education, special needs, Indonesia. I shall be addressing over 800 people and that is a long way I have come thanks to my blogging. I feel there is so much to do, what it needs is a passion, belief in yourself and the will power to keep going as not everywhere you go, you will find success. I feel this is the purpose for the rest of my life after she graduates and settles down. This kind of work doesn't easily find audiences, but I feel I can’t give up as my voice could be that one voice that a mum somewhere in the world is waiting to hear and all that she wants to know is….”will my child speak?”  Just like I was…

Friday, March 30, 2018

The first Parent teacher conference

   
Class field trip
Today was the first of our parent teacher conference at NJIS. I am not one of those mums who would run after marks/grades as much as I see the efforts that have been put into getting them. I live with that thought in mind that each child has their abilities and they cannot be forced to perform beyond an extent in certain areas. I was pretty excited about seeing how Prisha has done so far knowing that its her new school, new system of education and new subjects. To add to it the teachers come from various countries across the world with different thinking and accents. The 3 month trial and work would help me decide if this school works for her. I have seen her less stressed and is very excited about going to her school. Other than waking up at 5:30 am each morning, her complaints are barely there. Weekends are naturally much awaited but other than that, she seems to be fine at school. I am also able to divert my mind and energy into a bigger cause due to this.
     We started with Art and the teacher was very supportive and said since her grades are all A+, he had nothing to add. He loves her attitude to learn, is settled and is like a sponge, he is happy to have her each day after school. He is planning a field trip to the art market close by and I am so excited about going with him. The PE teacher too had good things to say but yes being inactive in that area for 3 years has got her to lag behind but he thinks she is progressing well. The teacher is supportive and understanding and we are so happy to have him teacher her.
     Meeting the counselor at school was very lovely. She said we had a great child, who is eager to learn, settled well and is liked by everyone in general. She was happy that we support her in many ways and did say I was a different kind of mum , lol. She said in the world of parents seeking only achedemics, she is ahppy to see us supporting her every move. So thankfully we had nothing but good things to talk.
     Meeting her Bahasa teacher was great. Prisha came running in with an exciting exchange of greetings. She beamed as we walked in and appluded us for having a good, artisti and happy child who learnt well and she in fact felt that Prisha's ideas in class for activities etc were great. It helped her a lot as well. She offered us a chance for Prisha to learn an Indonesian dance and perform for Indnesian day as she loved her dance at school! We jumped at it! It was great to see the happiness on her face and we can't wait to see how Prisha would do that!.
     The social science teacher was very happy to have us talk about her. She felt Prisha was good in a team as a good player and added her inputs well. She said her attitude to learning, her concentration and promptness with homework etc really made her an outstanding kid. She felt Prisha was excited about learning new things and is very sincere besides being always chirpy! I rememebered how Prisha was always left out at the old school and we just wished to hear anything good where she was part of a group without issues. Those years we only looked for support and here the teacher said she supported other kids when needed! I just felt at peace coz I know my child well. How sad that they didn't see her this part due to their own incapability.
    Advisory is new to us and when we sat down to talk....he said.....Prisha is going to be a change in the world!! I was stunned and kept listening. He said she is extremly positive and hence is a positive influence on her class. She is inspiring and other kids can learn a lot from her! He added she was an example of sorts and they all can learn a lot from her. He addd that he would love if his daughter could have prisha as her friend!! I was overwhelmed as till now we were hoping she can have friends and here a teacher wanted Prisha to be his daughter's friend. You just start to be grateful. He said she had such qualities and strengths with which she was managing her self and her life and these qualities could be brought out and used on other kids! Her dance and speech were a motivation for other kids as not many kids come forward at this age. So her coming out has opened doors for others as well! She is self motivated and finds ways to cope with life and that's what education is truly all about! She has it in her to do things for her. Despite limitations she has survival skills that are great. He was amazed to hear how profoundly deaf she is and yet she does what she does and he is happy to have Prisha under him. He told Prisha she is lucky to have a mum like me....lol. It just felt so overwhelming and gratifying. He took our blog name and said he would love to share it with his friends. He told us such lovely things and said go ahead and change the world both of you! After facing 2.5 years of the nonsense....this was such a validation of what we believe in!
    English and Maths were wonderful as well and they were very open to helping Prisha in many ways besides the regular class work. Her sincerity and maturity was appreciated and they said they would be happy to record things on phone so she can hear later as well. She needs to be challeneged in Maths as she found she could do more and he was happy to support. English teacher was happy to make extra worksheets as well in areas she needs support.
NJIS got my confidence back!
     Music was one area she was very afraid of. The teacher is very strict and most kids run from that class. Prisha has issues singing and kids often look at her when she does sing. The keyboard hasn't been played yet at school and hence the only thing we could think was negative feedback. As we enetered, she came to greet us and we froze expecting criticism. But what awaited was a big huge grin and a pat on her for her dance performance!! She parised her efforts and said since she performed, others can get inspired now and come to dance on stage as well. being a small school, we find less participation. She loved her costume, her rhythm and the whole show! In fact she went forward and hugged Prisha much to her surprize and I could only grin! How hard we had worked for years for such a thing! We struggled to get anything done in the previous school, her lines were cut, she was discouraged from and Indian dance saying the school prefers western!! Here everyone was waiting to see Bollywood. What came as a really big surprise was... she said she would help Prisha do a trial for singing by closing a ear. She wanted to do trials where her hearing aid would be removed and one ear closed so that she can then hear her own voice and see where Prisha was going herself! I was overwhelmed. Its very heartening to know that our hard work and belief and never say never attitude found belief in her. Her speech on stage and her dance made such an impact on everyone to show how hard working and sincere she is and we are glad its being recognized.
     As the 3 hours conference ended I sat in the car still taking in what transpired at school. The flashback of the past years, the struggles at each school, the frustrations each day of finding our way, the constant efforts made to build a rapport with each teacher despite their own ways, the depressions of dead ends, the bullying, the uncoopertaive world around, the people who jeered and hurt us and endless search for the atmosphere where she is accepted with what she is....finally found all that in NJIS ! They believe in her, they support her and they give her a chance....all things may not yet be perfect yet but after all that we have gone through in various schools, she turned out stronger and has made a personality which is appreciated and we are grateful for all that we have here. What one school can do not just for a child but for an entire family! Each teacher appreciated her and me for giving her the right support. It felt good to be recognized by teachers as a great mum who changed her life and each time I said she is the one who made me! She is mature and very strong and our partnership as mum and daughter has only matured over the years. I still yell, correct, cajole, advise besides stressing her, questioning her, listening, pushing and counseling. My role in her life is still long way to go. But I don't have to work as much. I have made her self motivated, driven and positive with all my firm behavior, never giving in to tantrums in early years.
      Such times I rememeber ma'am Hudlikar saying many times....your deaf child will give you many more moments of joy and happiness than you could ever dream of. Just keep working with them and soon they would bring you joy! All those years are bearing fruits in the school here. We still toil, fret, fume and frustrate but for such moments of joy and happiness its all worth it. Each achievement has much more meaning as they come with many more hours of sweat, tears and heartaches. We have much more to achieve as we embark on the next part of the school year. 

Sunday, March 25, 2018

Bollywood moves at school

 
 Being into creative arts myself I always dreamt of a little girl who would be into all kinds of creative stuff...in fact I had this dream for both my kids and I saw it equally in both my kids. Yet as boys will be boys, he being good yet doubted himself and eventually have left being a "nag" but in the heart of hearts....the dream lives on. I wait for him to get back into it some day. Yet being a girl child, Prisha loves the dressing, the moves, groves, arty stuff and all things creative. I also have spent her early years teaching her to speak with creativity being a base. Hence she never got bored and was very excited about little things. She picked up a lot quickly.
    Having doubts about speech in the initial years was normal with a deaf child. Yet I always dreamt that my kids would sing as well as I was heavily into singing in my growing up years. So it was a blow to hear that all my singing in the 1st year of her birth literally fell on 'deaf ears' ! Yet I didn't give up that dream and while she did her job in the washroom, I would sing various notes in music with expressions to help her differentiate between the notes.Soon we were singing away our daily sentences and she copied me like a monkey! It was fun time therapy with her doing exactly what I did. Soon started her on dancing with the TV on....looking at all the hindi Bollywood dances. Encouraging her with no idea of how much she was picking up. I feel at times it good to be ignorant and keep walking your belief. She would dance to "Kajrare kajrare" of Aishwarya Rai and I would like it. It kept us busy as well plus the destressing factor.
Touch the sky!!
    Moving to Germany gave her a chance to take part in the International festivals. She performed on all the Indian dances along with her gang of girls. She worked very hard on it and as I had worked early on her in terms of rhythm, she was moving well on the beats.
    She loves Bollywood and hence when here in Jakarta, we got a chance, she would take part in dances. Yet she wasn't as encouraged as they felt the kids prefer the Hip Hop style and modern dances!! She still kept doing where she could manage. Her love for Bollywood made her feel the need to keep pining for a chance. Her aunt would encourage her by sending her beautifully stitched Indian dresses which she loved to show off!

Go for it my girl!!
     Moving mid term in NJIS, we soon realized she had a chance to perform in the Talent show! She was very sure she wanted to do Bollywood! A great chance to wear her lovely clothes. The Indian school suffocated her desires sadly and its ironical the multicultural school was so excited! So many kids and teachers said they can't wait to see her dress and dance in Bollywood style. Her music teacher even said she could dress secretly and turn up on stage to surprise the school. So we were all set and ready to perform. She suddenly looked grown up and all ready to move! She had been sick with the stomach bug all week and was very weak, yet her desire to perform was so strong that she kept all her sickness aside. I was afraid she might have a black out with barely any food for over a week, yet we focused on her dance.
     She watched Youtube for the latest dance Ghoomar and since time was short, she decided to put two together so that she is able to do a 3 min performance without issues. The later half was a dance she had done earlier. I loved the enthusiasm and the way she downloaded an app and found a perfect way to make the music flawless!
It matters to be acknowledged.

     On stage, she did a good job and we heard the crowd cheering for her. It was so heart warming to see each teacher, many parents and kids flocking to her and complimenting! Few knew of her disability and hence they were pretty baffled about it! As she basked in all the glory....she moved to the elevator to go back, her classmates were waiting there as well. They all cheered her and she was thrilled. It was perhaps the first time she found acceptance in class that made her extremely happy. They cooperated in taking pictures with her and she felt so thrilled. Its very important for everyone feel accepted and this acceptance works as a boost for confidence in us. I saw how this change of school and performance made her happy. My friends who have seen her dark phase say she looks happier and face is clearing up. She looks happier and calmer and it makes me grateful for what it is now. We hope to soon perform again at school and help her blossom more. She has been through a lot since her birth and we as family can only support and help her in her journey which isn't easy. Specially being global citizens, life does come with a price!
The link to her dance is Here !

Sunday, February 18, 2018

New school

 
1st day at school
  Prisha started her new school at NJIS where they follow the Advanced Placement which is the US curriculum. It just happened I feel as earlier while moving to IB school here in Jakarta, we had done enough research to make sure she finishes with IB. But looking at her focus on Art we had got encouraged to move her to this school. A dear friend in India encouraged us as her son is in US and he felt it would help Prisha enjoy what she loves better as she can choose her subjects early in life. A dear friend and my constant support in the US has been hearing my every struggle and we decided that perhaps this is the plan from above.
    Her first day at school had her excited yet very nervous. Starting afresh isn't easy as you have to face a whole new bunch of new faces and adjust with them. Carrying the bagggage of GMIS with us was a lot too. She has learnt to be more cautious about people. Its interesting to note that we both have learnt to read people very well. She reads eyes, faces, body language and is able to say what could be going inside of the person's head. In a way its great and some days I am afraid as she looks at me and I feel she has seen my soul. As a mum I am trying hard to mask my feelings a lot. I can't hurt my kids with my fears and make them weak.
    The teachers were informed about her condition and the kids were prepared for her. She was welcomed warmly in class and for the first time in 2.5 years she was sharing a table with a bunch of kids. They all sat and included her in everything they did. I was waiting for her messages from school yet there were hardly any. Mum's heart palpitates and at the end of the day I went to pick her up. She
With the head of the school
stood there beaming and we drove back home. She was happy and for the first time in a long time I saw no lines of stress on her face. She did find the studies different and having joined mid session it was likely to happen. The first two days went very well and it was a relief to see her happy. New uniform and style of studies was exciting. There were a lot of firsts! She did PE after a long gap, she was doing art too, she was having friends to support.....her first in 2.5 years! She related an incident when she disliked it when she could not hear what a boy said in class to her and she looked up confused and asked him to repeat and he said it was ok and was going to move on. A girl immediately told him to just simply repeat instead of walking away. For the first time someone was standing up for her !!! She was so thrilled. She realized the friendliness in school. The teachers were smiling and cheering always. The kids were inclusive though they had their class mates as friends. Being a small class she did find it difficult initially, she missed the cheer and bounce of classroom she has been used to. But she was happier with less noise and atmosphere of the class. She did feel she had to get used to the new teachers and their accents but she added that a week....and she would get them. I know her well and know how hard she works, so no doubts in mind on that.
    She has 4 days a week after school activity with art, dance and maths. She enjoys being there. The long hours from 7:30 to 4 seem to be just fine. She enjoys her school and is getting used to the slower pace. The teachers are observing her and feel she is smart and very focused. Her English assessment was done in class and she felt she is excellent with her concentration and has the best hearing in class!! Her listening skills are good as she knows she needs to concentrate a lot more than others. She loves studing and does her homework which is well spaced out.
     She was informed in class that there would be speech competition and anyone could participate. She promptly informed me and wanted to do it. I was excited and her teachers were so thrilled. They hugged her and cheered. This just boosted her spirits! What more does a child want? The other day there were earthquakes and she was very nervous. The school was evacuated and being her first time and new school she was nervous and shivering. She informed me later that every teacher was asking her if she was ok and were very caring. As the school was left early and I wasn't aware and would have taken an hour to reach....the head of the school and his wife gave her company through out the hour. This shows the value for human emotions and fears and its all that we parents need.It made us feel secure as well. For her birthday I had baked Onion tarts and all her teachers were so happy and grateful. Their little extra praise and kind words made her feel happy and excited. Is it too much to ask? Is it so difficult? It just made our life so comfortable. Though its a lot of work for me to travel 1.5-2 hours each day to pick her up, seeing her less stressed and happier makes me want to do it. Its tiring but she is happy and makes me happy too. She has less stress, fewer pimples and fewer tummy aches. Life for now seems easier for her and we have to just wait and see how this chnage is, or else its going to be another journey to find a newer place which aids her growth. Few more years and this shall be all behind us. As of now....we are happy we are an NJIS family!

Monday, November 28, 2016

Our silent world

                As I sat one day thinking about my journey with Prisha, words just flowed and as did my tears. I can never forget at least those days. Much has been forgotten trying to deal with it, trying to cope with a loss, horror, nightmare and every word that comes with such moment. But these emotions are raw even today. That one day changed our life forever.
                Here were words from my heart as they poured and they have no format or rules, yet they tell a story of many mums like me. Its not my fault , not anyones' yet we hold ourselves responsible. I hope this poem resonates with mums like me as they are written from my heart and are "From my heart to yours". Sharing them makes me stronger as I know I am not alone. I fought many odds and today can stand taller with her hand in mine just like I promised her 12 winters before. May God give every mum who shares a journey like me a strength and will power to make it there. So here is the day of detection to the day I decided to fight it and make her speak and also sing. Hope it touches few hearts and inspires mums to never give up as you are your child's strength.

                                                   Our silent world

A promise I shall fulfill
It was a day our fears came true
She looked grim, shook her head
Told us about your silent world 
It hit me like a bolt from blue
Ton of bricks or was it a whirlwind
I felt the land below me slide
Every step falling into a ditch
My beautiful girl a gift of God
Fragile, puzzled , twinkled eyes
Your dimpled smile judging me. 
I clenched you tight 
Tears streaming down 
As I left that room
My world shattered 
My dreams now nightmares. 
My heart pounded in its case
Wondering at things that happened 
All my songs gone into the wind
My world suddenly silent
My laughter, chatter and music
Replaced by a silent gloom
Clouds of misery and darkness
Oh future, take me back in time
Tell me please it's all false 
Nightmare, curse or karma
Shake me , wake me from this all
Give me a miracle 
That shall end this all. 
Doesn't work that way, does it?
Reality bites and hard it does
Denial , crying, sleepless nights
Nothing changed the puzzled gaze
Dimpled smiles gone into past 
Pouted lips dying to smile. 
Hugged you close to give you hope
I am your mum and shall fight it all
You will hear, sing and laugh
Come what may in our path
Shall fight fate and give you sounds
Shall give you my songs, 
Will share our dreams
Will hold your hand tight and strong
walk together till end of time
You are my soul, I give you my voice. 
Held you close to my chest
Wiped my tears and I smiled 
You smile at me and lo behold
The dimpled cheek, pouted smile
Kissed your face and your nose
My fingers in your curls
My wet cheeks on yours 
I hold your heart tight to mine. 
Walk with me my little angel
Know not what holds tomorrow
Through thick and thin
I shall be your shadow 
Change the destiny 
Or just make another. 
A journey we partake henceforth on 
My gentle soul, my little love
This is ours and we shall win
A promise I know I shall fulfill. 


Saturday, November 19, 2016

What are possible reasons for delay in correct speech.

The most common challenges and concerns of most parents are about delayed milestones and repeated corrections. Where do you think is the gap and why? 
1. Is the hearing device programmed well?
2. Is the speech therapy part missing?
3. Does the speech therapist make efforts to bridge that gap?
4. Does she involve the parent so it can be carried forward?
5. Has the parent understood what is to be done and how to expand it more or customize it further?
6. Why do you think the child is not responding or getting it?
7. Is the parent spending enough time?
8. Is the parent saturated, demotivated, too busy, etc etc?
9.  Is the child taking advantage of the parent?
10. Are we postponing the issue or hoping one day it would be alright and not driving enough to find a solution?
11. What are we doing as a parent to help solve this issue. 
        
      Would love to know what parents are doing about their challenges. When I found she was struggling with concepts at school we worked st home a lot more, lot of extra work on weekends, new vocabulary, talk about different things and show around. We felt she needed extra lessons from qualified teachers to support her studies. So we moved here and found good extra classes, text books and very supportive teacher group to help her. We had meetings at school before the session started and educated the teachers about hearing loss. Can see her doing so much better now. Doesn't take much help from us for studies now. Each day is a milestone for us all. 


Wednesday, November 16, 2016

Prisha's leaflet for her English class

   
Leaflet for English class
Prisha has ben made aware of every bit of her journey since she was little. Right from taking care of her hearing aids to, changing batteries to how to cover her ears when in sudden rain to keeping her kit ready for travels. She takes it all in her stride. The hard work with it, the bullying and people's attitude to her limitations and struggle to prove herself is a tough job and she handles it well since I was clear about empowering her. It makes life easier for them knowing well that they don't live in the bubble. We have our discussions often on various topics around it including how she wishes for a miracle when she wakes up to hearing everything naturally !! Her happiness at that moment is something I could die for. Her next thought of course is who she can donate the hearing aid to. Only they can think like this for others since they know what " not hearing" is like!

     This week at school they needed to make a leaflet and she chose on hearing. This is something she has been wanting to do but could not. I see her face filled with pride and it it's so wonderful that with no inputs from me she just came to show it to me for a feedback. I felt happy to see her work. She thought of all angles and has drawn the hearing aids herself. I am hoping to hear good things from her lovely English teacher. Meanwhile I swell with a sense of pride of a job done well.  

Saturday, November 12, 2016

Prisha's audiogram

Prisha's aided and unaided audiogram done in Germany

        Many people tell me Prisha doesn't look deaf. people don't "look" deaf. they are deaf and you only know when they communicate. If they are oral aural its harder to make out if the speech is good. When I say she has hearing aids and has sever to profound deafness many ENT and audiologists don't believe it till they see her audiogram. We worked very hard to get her here. Perhaps with a CI the journey would have been easier but we are happy with our choice and don't feel the need for anything except better hearing aids every few years. She is very supportive and works hard at school, has good grades and is a favorite with her teachers for her sincerity and concentration. I guess these kids learn this art of working hard early in life.
      Here is her audiogram that we took in Germany and she wears Naida III UP for both and loves them. We tried to upgrade but she didn't like it much as it had a RRRRRRR sound when she sang songs specially when she stretched her voice. She loved the new aids for their clarity and loudness though. She has been on AVT since 1 year of age. 
       We hope to soon upgrade to Phonak Venture which I think is a great hearing aid. Just looking forward to the right opportunity and time.