Wednesday, March 6, 2019

Soul talk with my child

Soul talks
     It's just hearing impairment ... ya right it's just so simple! Yet no one would understand what comes with just " one disability". Amount one has to deal with is a story only a family of a child who has special needs can tell. Every story is different and each have their levels to deal with and goals to achieve. Ours affects her hearing, speech, intelligence, education and social acceptance.

      This evening she gave up.... like many other times. The school pressure here is immense, so much so that she has no time for herself most days. Having hearing loss brings a lot of mental and physical exhaustion trying to deal with so much info given and trying to concentrate on hearing it right and making sense of it all.  The piled up work never seems to get over and to top it she has deal with a lot of isolation and insensitive behavior of people around. She is an extremely hardworking child, perfectionist, fighter and is ready to put up a fight against all odds. She is sensitive as she has seen a lot in her life. She knows what is struggle. Small things have meant big for us as family. She knows a mean look to a warm look. She knows what not having something means. She is learning to walk away, learning to accept that people cannot change, we have have to change ourselves. She is learning to question bad behavior, learning how not to be and how she should better herself. She is eager to help those who need help because she knows what it truly means. She is grateful for every bit of help because she knows what not  having means and that little help was her world that time. As a family our values have changed and become stronger. She sees me helping others and she learns that it's important to do so. Her struggle to find her ways in the crazy world is far more than we can imagine. Yet she doesn't give up. She stands up after every fall. Today was one of such days. 

    Exhausted from too much work and dealing with insensitive remarks at school just got too much. She had Technology work that needed lot of research and work done over a month. She realized she can't do the webpage designing on a MacBook and as we don't have a MS word she was trying on Edit. After much work at home and then by a lot of support from my kind neighbor, she realized her research was wrong!!! Poor kid was devastated as tomorrow is her submission. I told her I will help by doing a bit of research with her and see where I can support. She said ...." I give up !"  When I said I can help... she said.... I will give another try ma. She and I sat and discussed how we can put it together and how instead of struggling more and trying complete and again failing.... we make choice where we take the offer of the teacher and work at school and invest that extra time at home for other things or resting her tired brain. 

    Moving to dinner table, our conversation moved to a different level. She was exhausted and empty completely. Yet these talks are important. We talked about life in general and realized how much we need to work each day to make it. She and I discussed how we can't just give up on our dreams and have to keep proving ourselves. I often relate my life incidents as examples for them to follow through. After all what I have been through hasn't been easy. Much I can disclose, a lot remains in my heart as I need to respect few relationships and people. Many of my close friends wonder how I can be so strong after seeing through so much, but then life is a teacher and we have to bear our crosses. So shall she. Her frustrations are real and much as I try, I can only help her that much. I talked to her and I find she is so much stronger than I am at her age. having a disabilty made her very strong and gives her the power to know herself much better than most her age. Telling her and affirming her own power and then to walk from there... is something I help with. That gives her the feeling that she is doing right and moves with conviction. With her disabilty, its much harder as its not a seen one and hence no one understand how much it affects her life! So this power she has to have it in her own hands now and always. As a mum, I need to lead her there.
       As we ended our talk, I realize how much mature my child is and how much I am able to understand her better with these talks. Often sitting down and expressing fears and using examples of life gone by, we can help them to work better and be more motivated about the life that's still waiting for them. We as parents need to be that support that helps them to lead them back to their own selves. Letting them find their path when they are lost and motivate themselves when they are low and finding out what works for them is something they need to learn and as parents we need to help them by having these "soul talks" with your child.

Family mental health

Together through it all!

     Gone are those days when discussing mental health was a taboo or stigma. Today with the stress of lifetsyle have given us emotional and mental pressures to deal with. Life is harder and peer pressure and manintaing sanity is becoming a great challenge. We suffer from depression, anger manangment issues, feeling of isolation, competition, social acceptance, popularity issues, social media pressures and many many more. We are more lonely than ever before thanks to the lifestyle and gifts of modern times. This applies to every single person and I doubt there is anyone who has no pressures or is not suffering from mental issues. Its just how we all deal with it that makes the difference. Few buckle under it and few learn to fight all the way....this way or that it does lead to a lot of damage or scars left behind.
      This made me think about my life and the mental health in my family. Its been a very challenging life trying to deal with many issues but what topped the list was dealing with a disability and issues that surrounded it or came with it. Its a life time commitment with emotional, psychological, financial and mental pressures. Every moment is a surprise or a shock and no moment can be taken for granted. The mental stability of family is always dwindling with situations and it needs all the might to keep it going. Each point in my life I have been connected very deeply with my own self and that helped me deal with issues that affect others. What doesn't appeal to yourself cannot appeal to others as well. Putting myself in the shoes of others helped me deal with it even better. I am pretty sensitive and though it did help me deal with others very sensitively, it did leave its impact on me. Being the oldest child I saw the struggles of my parents and they trying their best to give us all they could. Having younger siblings came with responsibilities which I did handle to the best I could. It did make me a giver and seldom asked for help for myself. Thus my foundation was laid for life where I did become more of a giver and in return needed lot of love and acceptance. At times it came and at times it didn't which was a disappointing but I guess I became resilient and learnt the pschology of human behaviour well. I have been very closely using the learning on my family and learning more on the way as well. It does help me understand more deeply and am able to use it for the workshops and talks I use or with mums who seek help from me on various topics.
      Many times I notice that when there are meltdowns and mentally tiring issues...easiest is to give in to the situations or ignore it all together with the motto....this too shall pass. We don't realize though that nothing just passes by without leaving an effect on the person. By ignoring or giving in we could be actually allowing it to grow bigger. Years later we find it even harder to address the issues. Many mums ask me about these meltdowns and them being afraid of addressing it when kids are younger as they fear being labelled as " bad mums with ill behaved kids". They fail to understand every child has these moments and sooner we start to work on the children early, the easier it would be as family to address them in coming years. Yes....Its a lot of hard work holding the bull by its horn. Be it an arguement with the spouse, to his family, your family and your kids or the neighbors. Chances are we are trying to run away from these as we " fear facing these demons" Yes I find them hard too but I know by brushing them under the carpet doesn't really work. So what do I do? I address them as soon as I can. If its a tantrum of my child...I would put it in place as soon as I can. Hold him with his hands in front of me...Look him in the eye and TALK ! Tough? Oh yes it is and still is....but kids are smart...when they see that you are talking from experience and all that you do is coming true...they learn to respect your experience. Its hard to talk to an angry spouse or a sulking relative or a friend who is avoiding you due to some nagging issue....the idea is to talk however hard and face the reality. One thing I always follow is....telling the truth, however hard it maybe. My kids know that when they tell the truth, whatever blunder they make, mum would listen and forgive and support them to come out of it. We have a pact there...they ask me..."you won't shout mum if I tell you?" They know they are safe as I shall then help them. It helped to make a bridge of comfort. But that doesn't mean we have a honeymoon each time...its still tough and parenting brings a lot of tears and sweat each day at every stage of their growing up years. Life isn't a colorful bubble and hence let them see the real world. The world out there is real and we can't protect them always.
     Once the kids respect you and value your opinions..half your battle is won. My bond with my kids is very close and that helps me to be their constant supporter and we talk like friends where I never shy away from talking facts or showing a mirror often. What's important is for the spouse to follow the same. They can and will feel a kind of " rivalry" as to why kids listen more to the mum, but then we spend more time together since their birth. There are certain rules we do follow in our family and they help us deal with it well. I deal with the emotional and day to day issues and my husband takes over their studies and planning of their lessons etc. Yet we do have our moments and then we work on it as a family. This helps to know what is going on in the minds of everyone and helps build a kind of dependence for comfort. In times that are hard we seek the support of each other as everyone outside of your family unit has different opinions and what works for them may not work for you. As we grow older we imbibe more from the outside world and though we grow in the same family, each sibling does turn out different but few sets of values put in early years does help. No matter what happens between my kids and they are 7.5 years apart, I make sure they know what's happening in each other's lives and keep doing things to keep them connected. The world is a complicated place and as years are going by, its going to be even tougher. Its hence important that they know that have each other's back no matter what! Its a daily process and my investment on this front is very high. I had built up few methods to help my son deal with the sibling coming in the family, my husband learning to spend time with kids beyond the TV and me sitting and working on the issues that bother them. It all takes a toll on me many times but this is far more important than a lunch outing at that moment. I have found ways to deal with it through my counseling mums, writing, spreading the little I know and of course cooking! It all helps to keep my family together. Like my son said in an email recently...." however ill you were, you made sure we had hot fresh food for us each day". Isn't that what we seek that the kids recognize, the spouse understands and we are connected on many issues that are most vital for family bonding.
     Never take anything in the family for granted. Address it as soon as you can. Little things we do, shall help the family stay together. Life in't easy in present times. I have seen so much of tough times and tough decisons to be it money ( its never enough when you are a single person earning), my son with his emotional nature, his studies and him moving away very far from us to Prisha being deaf, being bullied extensively at her school, to adjusting with the hearing world to country changes adaptations etc etc. Being a parent is the toughest these days and with so much stress around the health today, it is very much of a concern. Fortunately we 4 are very resilient and we break, fall, scrape our knees, limp and walk again with the help of each other.  Giving up should not be a solution as that's the worst we could do as a family. Know what works for you and find ways to work around issues. It could be as easy as using a counselor, talking to a "real" friend each day who can help you see issues better, reading books or articles and using your own intuitive voice that helps you know things better. Have your "me time" but make sure you know what is happening in your family. Don't be a helicoptor parent or spouse but be involved and never run away from the situations. Remember that if you run away from problems, you are setting an example for your family to do the same. Kids emmulate what you set the right example and see how well your family bonds well and works through all the tough times together and individually. It shall be a great way to work with your family health always.

Wednesday, January 16, 2019

Prisha’s 15 th

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She turns 15 I look at this special no. ( she reminds me how special- 15 on 15th) I look back at the journey of the last 14.5 years. It’s been a true journey of gratitude as each year adds up and gets us closer to our goal when she will be truly independent. It hasn’t been but these 14 years have changed my life forever. She has grown as I have as well. She is content, compassionate, kind, considerate, very mature, level headed as she is spirited, enthusiastic as well very innocent still. She knows when to step back and when and how to make people feel special. She has her bit of negatives but her spirit to fight is above all else. She knows her struggle and wants to overcome it all. Despite all the pressures I have put she is positive. We both have grown together and at times I feel it’s my birthday too with her as a new Ruchi was born that year. She gave birth to a fighter as well in her mother and we fight it out together through all that life has and is offering. I am glad we are sharing our journey coz not only does it  give hope to mums like us, it also gives us positivity through such amazing people who hear us and motivate us constantly through likes, comments and shares. 

She waits for her next birthday each time one goes by! Isn’t that so amazing? She loves her life despite the fight, struggles, tears and joys! I am so happy I had my mentor who hand held my life and made it positive. I was able to pass that to her. She waits for little surprises, doesn’t want to trouble me with any demands but is happy with little things I do to make her feel that she is loved just like her sibling and is precious to us all. Isn’t that true inclusion without making her feel “ special - special”. As always I woke her up with a bday song video recording, a surprise hand written letter by her brother( it’s a must have on my list) and a home made pizza party at school to treat all her gang of teachers and friends. The day has just started yet she has lived this since a year already. May God keep her spirits this positive and high, may We have the strength to give her the support to help her achieve her dreams and may she look back with happiness, gratitude and pride at her years gone behind to make her who she wants to be. May she live a life of purpose as a purpose driven life gives depth to life. Happy birthday Prisha! Shine bright as we all love you no matter what! Yes....I am sure you just celebrated your birth time of 8:10 am .... keep positive and live life to the fullest! Your entire family wishes the very best for you now and always.

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…

Thursday, November 15, 2018

Work shop idea

A share of Prisha’s artwork led to an idea. It got me started on thinking how I can share my journey to help more mums see how creative their kids are as well. Many ask me questions about Prisha’s creativity. I often hear that it’s inborn talent. I differ on that. If this was true....why do doctors kids often follow that profession, infact most kids end up following the same profession as their parents. Musicians’s kids are great at music. Of course there are exceptions yet in most cases this is so. It’s coz of the environment that they live in, what they are exposed to and willing you are to instill that in the kids. How much are you ready to help them develop that. With Prisha’s hearing loss it was hard to get her to relax and get her to listen. I used art that turned out to be therapy that helped her in many more ways and now we can think of it as a profession as well. I have spent endless hours on helping her with understanding art, become a keen observer, be self motivated and get to where she is today. Being her first art teacher, a lost artist myself , I wanted to extend it to others. Hence today I have given out an offer to hold a workshop for mothers in my community around to share my journey of art therapy and how to build creativity in kids. Am so excited! Of course this is FREE!!! 😄😉❤️. That’s just so me! A child benefiting is my biggest reward. 

Wednesday, October 31, 2018

Halloween dress up

Scary doll


Love her blank look 

The make up!
Her zest to give her all is very admirable. I have had a very hectic week. Halloween is here and she had to figure out an attire. She did her research and found a DIY face color to paint herself white. Then started a digging in of her wardrobe to figure out a scary look. First of as an Indian at heart I still don’t get this concept of scary dressing. As it is too much is going on in life. Yet I never discourage her and keep her enthusiasm up. I help her to come to a point where she is comfortable.
     This morning I woke up two to photos on my what’s app which needed an opinion. I loved what she did. So this morning she was at it. Out came the dress and then the eye shadows and the liner and lipstick. What we have ....we use! And once make up was in place, she did her hair into untidy pig tails. As I looked at her I truly wondered at this celebration around the world and I admired the spirit she had to participate. She knows not many at school shall be doing it up yet that didn’t stop her from doing it. And she was ready to go. I pulled her for quick pictures as she rushed to school. On the way she edited them to look more scary! She was equally worried that I might die of fear as well. In all the look was complete and she is a happy person. I am glad that in all the crazy rush of many thugs she finds ways to ease her mind, be creative and make the best use of resources, time and moments.
   Isn’t that what truly life should be like? Accept what you have and live for what you have an make use of what you have! Coz life is like that! 

Grade 9 PTM

It’s that time of the year when it’s time for the parent teacher conference. Prisha is always excited about knowing what her teachers have to say. She loves to hear the feedback from her teachers whether it’s positive or negative. She says she learns to be stronger and positive and wants to know where she can improve. All her teachers have given such a positive feedback and say that she had brought so much positivity and energy at school. She works hard, is involved and has so much confidence. It feels good to know that all the hard work, dedication, sweat and tears are going the right way. Still have a long way to go though. Her dances were appreciated as much as her art that finds place in each subject. She loves PE and that blows me away. Her PE teacher tells me often about how he loves her confidence and her attitude to give it her all. Most said they had nothing to give back except good things. It gave me more strength specially when there are days I worry about her future which is normal when you have a child who has had many challenges in her life. She has had many and each time we talk and be positive about it and work forward because is there any other way? Being positive is the way to go! The highlight this time was when her STEM teacher said that in the short time that he knows her he feels she is a wonderful student and has grown in the new subject at school. He is now ready to give her responsibilities as she is ready for leadership roles! Woohooo! Isn’t that wonderful ! We have struggled always with building her confidence and getting her to hear this just made my day! Every moment we work on making her feel strong and confident about her life. To be accepted and given such feedback is so motivating. Her scores made me proud and I feel grateful yet again for having a great mentor in early years who gave us yet another such grateful moment. Her understanding of language at the level now is challenging yet she has scored 75% and up. I can’t be more relived and grateful for this day.

Friday, September 14, 2018

Art and speech

The room with a view, a mug with a message....Ideas worth drinking! Perfect place to learn
My main mission has always been that Prisha should get as independent as she can. Its been exhausting trying to constantly drill many things together. At times I knew why and at times I just pushed it. The many denials, wailing, anger, tears etc just didn't affect me. All the while I was trying to make sure she gets exposed to as much as she can given the situation and limitations.
     At NJIS, she seems to settle pretty well. This year she just has 4 other students in class. At times I am ennerved then I calm myself down thinking of positive thought. There is a reason she is here and destiny shall pave her path. This school she is getting exposed to art and public speaking. So I am all out to use these for her. The teachers are fantastic. Her public speech teacher is a TED talk speaker and who better can give her tips on public speaking than her! After me she has to start these talks and has to inspire parents, specally the mothers to work with their kids! Ms. Ilonka is an amzing teacher with so much to offer! So when I heard she is holding "art for terified kids" I enrolled her for that without getting into details as I know she would give a huge extention to art besides just draw and paint. True....that is so right!! Prisha and I went in yesterday and we realize that this is one of the best things to happen to us! I walked into her class to observe and I became her student! Those 30 mins with her taught me so much more. I learnt to visualize art through writing and quotes. They just spoke to my soul and before I realized I was actually painting! After years of sitting at home and trying to do various things, this was a wonderful extention of my life! As Ilonka preped up for the class, Prisha played the piano....another thing that we wanted to learn and see how she got to play it! The whole ambiance was amazing! Art and music is the best combination anyways!Prisha and I painted and had such a good time finding ourselves through those writings.
Public speaking classes

     Today Prisha had her public speaking class, and I thought of sitting in as a learner. I feel they would help me guide Prisha at home and also it would help me in my speeches as well. The time just flew and it was wonderful to find my confidence there. All the speeches done in the past have given me a voice thats not afraid to come out in the open. The small nuances and essentials made me feel quite at home. I saw Prisha answering quite a few things with confidence. It gave me a small eye view of what she does in her classrooms and if she is really involved in the conversations with the teachers I am so happy that this part of learning shall open so many doors for Prisha and help her build her future in a positive way.
    I am happy to be there more as a learner myself with Ilonka. There is no age to learn and am so happy to be a student and be learning alongside my daughter. She has been a big turning point in my life and she gave me a chance to learn so much without having to read books. My silver greys are growing yet my mind keeps me wanting to learn as a little student. After all there are so many wise people in the world whose knowledge can benefit my thinking process and perhaps help me to extend that to others. I am grateful each day for these blessings. After all its moments like these that make you better people with more good things to add in life. 

Tuesday, September 11, 2018

My narrative ...a speaker now

UNESA Surabaya

    My journey with Prisha has been a very arduous one. All kinds of ups and downs have made it enriching yet exhausting as well. Perhaps coz I got too overinvolved and barely took time off for myself anywhere. Everything was around her and the rest of the time went by in looking after my family. Shopping, enjoying time for myself came much later once she seemed settled in her schooling and started to work by herself. Yet I have to stand around as a counselor, nurse, doctor, guide and support at all times. Our moves have been quite a big culprit for her stress and insecuroties. Lack of friendships due to our moves have made her dependent on me. Yet in whatever time I could steal I did try to do what I could. I baked, got the Indians together for lunches to have a support group, volunteering at schools and trying to keep active with my creative skills of phtography, sketching etc.

    Yet I realized that what really kept me most excited was reaching out and sharing my story everywhere. I felt it was my duty to tell my story for others to be aware and perhaps be able to help someone who seeks help. I blogged, wrote on various forums and started to give talks at schools and various public forums by invite. It all started when she was 6 and I went to a deaf school in Delhi and gave my first talk in front of an audience of 200 or so consisting of deaf students, teachers, volunteers from schools. It was a pretty moving experience when few kids wanted to touch me to see if I was real and how lucky was Prisha to have a mother who strived to make her speak. Soon after I went to a German school to talk about India and I realized that it was something I truly enjoyed and could speak from my heart. I didn't need a script really. My various conversations with new parents of deaf kids gave me a confidence slowlyy but steadily. I started to go to classrooms in Prisha's school to make them aware about deafness. I realized how the community was open and welcoming. Soon I was doing it as a regular in her classrooms and then that got extended when I became a substitute teacher at Frankfurt International School, Oberursel. My talks in classrooms became a big bridge for Prisha as the kids started to accept her and applauded her for being so strong.
Consulate General of India, Frankfurt

    My first big step was being invited by the President of Ladies club to the Indian Consulate in Frankfurt. To address the Consulate General Mr. Raveesh Kumar himself along with few of his people and an entire ladies group headed by Mrs Ranjana Raveesh was a big confidence booster. Being accepted and encouraged by this I decided to do more awareness programs everywhere I went.

    My move to Jakarta after Germany was a tough one. Yet before I fell into complacencey, I decided to hold talks in places I could. Jakarta was very welcoming and accepting in hearing my voice. Schools like Ishine, Ismile, Aluna, Women forums like High Tea, IWA, deaf community at the church and many others soon invited me to share, help and connect up. It helped me soon to be invited to International seminar by commissioner of child protection to her events as a speaker regularly. Being a part of a community of elite keynote speakers from renowned universities and government organizations helped me build my confidence. Looking at me, Prisha too developed a confidence to be able to talk on disabilties awareness and gave 2 speeches at her own school. It made me believe in what I do to get a lot of love and respect from the community around.
Lollikids, Jakarta

    Last year has gone by in initiating a volunteer group for a special school and then move on to met other schoos where we could support them in ways possible. Jakarta isn't an easy place though to make changes. Everyone has a pace and its not easy to move things. Yet my little efforts are now being paid off in different ways. I am talking on various topics besides just deafness. I was asked to step in and talk on role of early intervention in kids for preschools like Lollikids and Ismile. They wanted to hear a parent"s perspective and how it changed my life. Connecting with teachers and parents has been an enriching experience for me.
   My biggest moment of happiness came in when the director from Ministry of education, special needs invited me to be a part of her big seminar at Jogja in November. She felt I was the right voice to address 800 odd people. I am very excited and am happily preparing for that. In the meantime an invite from state university UNESA, Surabaya came my way.
    It was the happiest moment as in 25 years of being home, I was on an all expense paid trip to be a part of an Internatioanl seminar! With 3 other speakers from Indonesia, Malaysia and Japan, it was a very humbling experience. To be appreciated and applauded by 200 odd audiences, it made my belief stronger that if we believe in our work and persistantly work, we could acually make a difference in our lives and of those around us. Its been 12 years of sharing my work and voice and to be rewarded by this was amazing. I am now looking forward to my two upcoming talks at international events where Prisha shall be performing as well. Its been an amazing journey so far and I am grateful that I documented my journey and I hence got a chance to share my story on a US based website as well. These little acknowledgements and rewards have been my motivation besides seeing happy parents whose kids benefited with my inputs. 25 Talks and counting!! Isn't that how we can change our narrative? Yes I changed talk at a time!

Femina 2008, January