Showing posts with label Deaf kids. Show all posts
Showing posts with label Deaf kids. Show all posts

Wednesday, April 29, 2020

Acceptance...the first step

 
You are perfect from what I see
     One of the toughest times in the life of the parents is of accepting the disability their child could be facing. We take it so much for granted that our child shall be born perfect. The mother waits those 9 months with dreams of having that perfect baby and nurturing it to perfection.
     At birth seeing the child and her own pain, one never thinks that there could be an issue unless the doctors do the required check ups and inform. Many countries still do not screen the child for hidden disabilities and most times unseen disabilities like hearing loss go unnoticed till the child is about 1-2 years of age. Mild and moderate goes unnoticed even longer. The parents too grow with their baby and adjust to its need till a family member or an outsider points out a problem that has gone amiss.
     From my own experience I missed out many months too as I was so overtly overwhelmed with having a perfectly looking baby girl after the birth of  two of her cousins who had other disabilities. So when my family member pointed out, I dismissed it. You never think that the child who is growing with you is facing an issue. Both adjust to the new life that comes with the birth of a baby.
     The moment the mother realizes that there is a problem and it needs diagnosis, most times they wish it to go away or just stay in denial. Even going to a specialist takes strength and acceptance. It’s of course unnerving! Very difficult as it’s a path few are able to easily accept and walk on. There is no defined path as each child is born differently lived in different circumstances and environment.

Accepting you with all that I see and all that I have 
     Fear of the unknown path, direction, correct advise, finances and ability to be able to support the child with needs are just a few of the concerns. Mothers have the hardest time accepting that her baby that she so dreamed of, can have an issue. Social stigma in various communities also adds to the pressure of bringing up the child with special needs. So prayers and wishing for miracles come as ways of coping with it. Self pity, denial, self bashing and guilt take over their world. They don’t realize that it’s not their fault and though we are so advanced in science, we still cannot predict many disabilities that may come along with the birth of the baby. Self pity and guilt takes over their new world and the child is suddenly neglected. They give up as it’s scary and the many thoughts that take over their lives somewhere leaves the child out. There is a certain disconnect with the child.
     I have had many conversations with mothers over the years very closely. As I heard them, a lot was there that was left unsaid. Their hesitation and anxiety was always understandable and I did say to them that it’s okay to acknowledge that “this is difficult and maybe it was better they did not have that baby”. I have seen a kind of sigh of relief in them as these are feelings society would shun this thought and judge them as bad mothers. Each mother goes through this phase as she knows she is now bound by many changes that come with a disabled child. It’s scary and daunting. Her world shall not be the same and doesn’t know yet what her “new normal” shall be. No one openly accepts this but when I acknowledge that I did go through this and many other mothers did too...most of them feel relieved and accepted. They bury these feelings due to fears of judgment and also are unsure about feeling that way. “How can you wish you didn’t have that child! It’s inhuman and unthinkable!” So instead they bury these feeling deep inside and hurt with guilt between the various other emotions.
     Accepting every feeling coming in is I think the first step towards acceptance of the situation. To let her know that it’s okay to feel this way...is the biggest strength and power one can empower her with. The guilt is lesser and she starts to empathize with herself and the baby. It’s the fault of neither. So a new and stronger bond is formed of love, compassion and empathy. She learns to accept the situation and the baby and it’s easier then to take the next step. She accepts that there is something amiss and she needs to move forward and get a diagnosis and support that comes with a child with disabilities. Once she accepts this...it’s easier to get her involved and guide her to a space where she can work closely with her very “special” baby. But yes...despite this we can still expect varied emotions and it’s a seesaw kind of situation where she would require someone to be a pivot and see her through this phase. I truly believe “acceptance is empowerment” and it’s the first step towards supporting a family towards the world of special needs. 

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…

Sunday, November 6, 2016

Creating "repeat" opportunity for deaf child to pick language

A recent vacation to Thailand taught her lot of new words and experiences 
   
       Revisiting is an important tool for the children with hearing and speech delay disabilities. The revisiting helps them go back to the time the event occurred. Its a tool that helps them reinforce what they have been through earlier. The language associated would help them recall the event and that's only possible through using the vocabulary and expressions appropriate for that event. A normal child learns this normally as s/he keeps hearing this through the normal hearing. The repetition is happening naturally since parents and other friends around are talking about it, its falling on the ears and subconsciously the brain is "hearing" it. While the child is playing around , he still "hears' it. With a child with hearing aids, its limiting and most times you have to draw the attention towards it. The HA could ignore it due to various limitations which we are aware of. Hence consciously the recalling is done.
      I have done this very regularly and consciously when she was little. The brain gets automatically trained to do this. It was so normal for us to constantly talk about things happening around us. We never faced the dearth of subjects and discussions. Never got bored as we made it interesting. I learnt from Prisha as I started to learn from her point of view rather than enforce my ideas on her , limiting her creativity. We discussed the event many times hence "revisiting". The steps that work are simple.
1. I foresee and upcoming event.
2. I start to tell her about it using new words and vocabulary associated with it,
3.Start discussing and clearing her doubts.
4. ask her to repeat the order and encourage the new words, repeat if needed.
5. At the event start talking about it again. Use those new words again so its fixed in her brain.
6. Use more language associated with it. It may mean I am away from the crowd and family or friends but then its my priority.
7. Once she is settled with it, she goes around experiencing and fixing all that we discussed in real time. I am still around to help her, giving her priority over everything else.
8. Once event is done, we start to discuss again and see if we are using those words and new vocabulary and expressions.
9. See how much we are progressing on it, make changes or add what is forgotten or slipped.
10. Go and relate to all those who are around at home. Mindfully keep a watch on your child to see if s/he is using the words and expressions you have used earlier.
11. Without making it obvious add your bits to the conversation where the words and important parts are missing.
12. Correct the language, sentence structure, pronunciation, etc.
13. Ask them to create visuals of the event. Can be in a form drawing, digital medium, 3D artform, waste material recycling or even a song.
14. Display and show around your prized trophy.
15. Few days later, recall the event again and see if the words and tit bits of those are in memory still.
16. Most important don't get too busy for your child. If you dont have time for them , they cannot have language just from out of the air. Unless as a parent you are commited don't expect miracles.
      I hope these pointers will help you help your child. Please know that its a life style and you have to keep working on it. It seems hard and isolating but its not. If done well, you can balance your lifestyle with this work. When you see your child coming back with better language with ease and happy smiles, all this effort shall look small. I often talk to parents and demonstrate how I did it. Giving plenty of examples and ways of making it as a part of everyday life. In few years it becomes a way of life and easy to manage. talk about school, homework, birthday parties, weddings, funeral, vacations and everything else. Don't get disheartened. It sounds a lot of work but it isn't if you do it in the right spirit. I hope this is helpful. I am open to feedback and any help needed to understand this. This helped us immensely and I hope it helps you all too.


Creating "repeat" opportunity for deaf child to pick language

A recent vacation to Thailand taught her lot of new words and experiences 
   
       Revisiting is an important tool for the children with hearing and speech delay disabilities. The revisiting helps them go back to the time the event occurred. Its a tool that helps them reinforce what they have been through earlier. The language associated would help them recall the event and that's only possible through using the vocabulary and expressions appropriate for that event. A normal child learns this normally as s/he keeps hearing this through the normal hearing. The repetition is happening naturally since parents and other friends around are talking about it, its falling on the ears and subconsciously the brain is "hearing" it. While the child is playing around , he still "hears' it. With a child with hearing aids, its limiting and most times you have to draw the attention towards it. The HA could ignore it due to various limitations which we are aware of. Hence consciously the recalling is done.
      I have done this very regularly and consciously when she was little. The brain gets automatically trained to do this. It was so normal for us to constantly talk about things happening around us. We never faced the dearth of subjects and discussions. Never got bored as we made it interesting. I learnt from Prisha as I started to learn from her point of view rather than enforce my ideas on her , limiting her creativity. We discussed the event many times hence "revisiting". The steps that work are simple.
1. I foresee and upcoming event.
2. I start to tell her about it using new words and vocabulary associated with it,
3.Start discussing and clearing her doubts.
4. ask her to repeat the order and encourage the new words, repeat if needed.
5. At the event start talking about it again. Use those new words again so its fixed in her brain.
6. Use more language associated with it. It may mean I am away from the crowd and family or friends but then its my priority.
7. Once she is settled with it, she goes around experiencing and fixing all that we discussed in real time. I am still around to help her, giving her priority over everything else.
8. Once event is done, we start to discuss again and see if we are using those words and new vocabulary and expressions.
9. See how much we are progressing on it, make changes or add what is forgotten or slipped.
10. Go and relate to all those who are around at home. Mindfully keep a watch on your child to see if s/he is using the words and expressions you have used earlier.
11. Without making it obvious add your bits to the conversation where the words and important parts are missing.
12. Correct the language, sentence structure, pronunciation, etc.
13. Ask them to create visuals of the event. Can be in a form drawing, digital medium, 3D artform, waste material recycling or even a song.
14. Display and show around your prized trophy.
15. Few days later, recall the event again and see if the words and tit bits of those are in memory still.
16. Most important don't get too busy for your child. If you dont have time for them , they cannot have language just from out of the air. Unless as a parent you are commited don't expect miracles.
      I hope these pointers will help you help your child. Please know that its a life style and you have to keep working on it. It seems hard and isolating but its not. If done well, you can balance your lifestyle with this work. When you see your child coming back with better language with ease and happy smiles, all this effort shall look small. I often talk to parents and demonstrate how I did it. Giving plenty of examples and ways of making it as a part of everyday life. In few years it becomes a way of life and easy to manage. talk about school, homework, birthday parties, weddings, funeral, vacations and everything else. Don't get disheartened. It sounds a lot of work but it isn't if you do it in the right spirit. I hope this is helpful. I am open to feedback and any help needed to understand this. This helped us immensely and I hope it helps you all too.


Sunday, September 18, 2016

Give clearer instructions to deaf kids

Be specific with instructions to deaf kids specially while giving them corrections. Just saying " I can't hear" " speak clearly" " I can't understand" "repeat " isn't going to make them understand why and what. Tell them specifically...." You are too soft and garbled" " you are speaking too fast" " your mouth is open and hence it sounds garbled" " your sentence formation isn't correct and hence repeat" or "I wasn't listening and hence repeat ". It would give a chance to the child to analyze and understand their mistakes better and they can hence make fewer mistakes by thinking before speaking. It's going to be easier for them and easier on you. A more broad statement only shall confuse the child further and the child feels intimidated for being corrected constantly. Specific instructions are a short cut towards clearer and open lines of communication. Don't underestimate the child's understanding. It's not easy for them to take corrections constantly. But by giving them clearer instructions, you are respecting their efforts and helping them analyze their own efforts. That's more encouraging than just a straight statement..,I didn't understand speak again.