Why is a mindset still there?

   

 I have been away from blogging for so long now and it feels good to be back typing away and venting out or sharing my thoughts (in better words). A lot has occurred in the past years and I hope to be able to recollect and put them down here. Facebook became my mini blogs that captured the splitting moments rushing by and as I type today I realize I missed my writing. 

   Prisha is in 2nd year university, studying fine arts in the Netherlands. Time has flown and looking back I feel grateful that she is independent and doing a course she loves, slowly making a path for herself. We both were watching a Hindi movie that was recommended by a dear friend. "Shrikanth" is a movie based on the real story of a blind person who made it in life with sheer determination and gave employment to many. He studied at MIT in the US and then started his own company and made it to Forbes. The movie brought back so many memories of the times gone by in my life.

   When Prisha was diagnosed as deaf, life came crashing 20 years ago! I had no information nor resources about how I could bring her up in a noisy world and make her independent. The sleepless nights and restless days were filled with worry and tears. Life gave me a blessing in the form of Alaka Ma and I started training under her. Those days I just remember the TV anchor speaking while the sign language was being used by an anchor on the side. There was a mindset that deaf were mute and can never speak. Under Ma we knew we could make it happen and the training was hard. In one of the many places she would take us to expose us to environment to aid speech therapy, she took us to an exhibition that had wares and art/craft by people with disabilities. Most of the work on display was by deaf people who did not have spoken language. I remember being numb as I walked by looking at things while my mind wondered if my child would also have limited opportunities. Would she be able to study what she wills? Would she travel the world and be able to speak like us? Would she have a career or would there be a limitation to everything she does or wants? Would she also be limited to making bags, candles and artifacts and hope they sell in the market and be under the umbrella of .... made by special needs people? Would she able to survive in the world of "normal" people and make a place of her own? Would she ever compete in the "normal" world with the "normal" people like a "normal' human being or would she always be in a "special" category?

    It's not that selling wares like candles and paper bags is any less of a job. It's a mindset and choice that is given to special needs people instead of giving them a choice that could help them to use their intelligence and capability. A choice of education and accommodation to be able to get higher education and build a career of their dreams. Since good speech therapy along with good hearing aids were not given to the deaf, they did not have access to good spoken language and hence cannot go to normal schools to compete with everyone. No equal opportunity. Hence they ended up doing such jobs and the mindset is the same. I remember Ma gave us a good lecture on this and how that day I was even more determined to work harder and make Prisha independent and help her achieve her dreams. My days and night went by only dedicated to my kids trying to balance the love and passion for the life of both kids. It was tough, lack of support on many fronts but I didn't give myself a chance to fail. Today she is achieving her little milestones and we still have a long way to go. 

   This movie today gave me flashbacks and a part of me just cringed at those memories. A couple of tears left the corner of my eyes and my heart is filled with gratitude. After studying and achieving all that he did, people still didn't think he can do more than paper bags! Why do we have this mindset? Or has it changed? Overseas people are open to disabilities and there is better inclusion. Things have changed over the years and there is more support for special needs, yet the mindset in general still needs to change that everyone can achieve their dreams despite the challenges. Thanks to Alaka Ma, we are on a path that doesn't make her disability a limitation in an opportunity, instead we have used every opportunity to challenge ourselves and make it work to our advantage without any special accommodations. She has competed with others without any major issues. We never used the disability as a crutch instead built on our strengths so that deafness doesn't define her and her achievements. I hope people would support and help those who need such help and it is not seen just left as another movie. It is a real story and I hope people stop judging instead see how they can help them. It is easy to tear up at the end of such movies and clap but we need to take the lessons home and resolve to support them by giving them an opportunity they so deserve. The world would be a better place with more people being independent and contributing with dignity to better the world.

Alaka Hudlikar- a path breaker

 

Alaka Hudlikar, a name that changed thousands of lives over 60 years! She was a name that meant “God” to the deaf children and their parents and a threat to those who were in the business of speech therapy and hearing aid business. I first saw her when she was 70! Short brown hair, flawless complexion, face that radiated… perhaps from her inner beauty and the self confidence! I was awestruck and also nervous. I wasn’t too sure about a 70 year old being capable of teaching us in today’s times! But time proved me wrong and I am so happy! 

A little about her that I remember she telling us about her growing up years! She lost her mother at a very young age. Her father was very progressive and he encouraged her to learn horse riding besides many other things back then! She was raised by her aunts and had a very modern upbringing that defied the times for girls back then! 

How did she get into speech therapy? There is an amazing story behind it. I loved the way she told us about it. Uncle was in Mumbai as he worked for Air India! She said she had two boys who started schooling! She wasn’t the type to just keep looking pretty or bake cookies for her husband and kids. Opposite their home, there was an institute called EAR! It was started by a lady from the UK to train deaf children in auditory verbal therapy. She was good at art and making charts and so she went to offer help in making some posters etc at the deaf school! She was offered to study speech therapy and audiology! She took it up and history was made!! She graduated with the highest marks in phonics which till the institute lasted, no one could beat her record! She was a topper, am I surprised? No! She was a winner born in an ordinary world! She was laser sharp in her thoughts and actions! She then worked in Mumbai (Nair Hospital)for a while before moving to Pune! Here she started her own speech therapy classes from home. One thing to mention was, she NEVER advertised and people came from far and near just through word of mouth! She was a messiah to the deaf babies and soon became a threat to practicing audiologist whose mission was to make money and wronged people! I was one of them too, so I know! They disliked her as she worked for the betterment of the deaf babies for a small fee! I joined her at 300 Rs a month for 8 classes which was just nothing for the knowledge we received. Her passion and drive became a name across Maharastra and soon people came to her from far and near! Have you seen or heard of people like her? She was a legacy in the making when she studied that! We parents were the lucky ones to get the best of her! Isn’t that amazing?

Struggles of hearing aids

     

Being hearing impaired isn’t easy. Wearing hearing aids is even harder. Listening through it and trying to manage back ground sounds along with unclear spoken language due to various reasons is extremely challenging. People have different ways of speaking, accents, tones and of course distance from the listener are a few of the challenges. Many times people turn around and speak under the breath which can extremely be frustrating. Today I asked my daughter to list down all the challenges she faces at school in grade 11. She is on trial with new hearing aids which require further programming. The list she gave me just broke my heart. She works really hard and it feels extremely frustrating to see how difficult it is for her. We try and we will keep on trying to help her. At times we are tired and exhausted from this daily fight. Every day is a challenge where we are trying to accept every difficulty. Nobody will be able to even imagine except the deaf of course, how tough it is to have a hearing loss in a world which is extremely noisy and extremely loud. She is tired after an hour of exhaustive class and then it’s a whole day of school and then it’s the homework. By 9:30 PM we are asking her to go to sleep so that she has enough rest and her brain has calm down and is ready for the next day. I hope seeing this list, people will be more empathetic and understand the challenges faced by the deaf community. It’s just not the person but the entire family that suffers together. We are all waiting for the big day when she’s able to graduate from her education and stand on her feet. The climb now is much higher and we need to support her even more. The struggle is real, support is precious, understanding is required and compassion and empathy are the most essentials! It’s a tough fight and we always motivate ourselves by thinking of how difficult it was when she was just a baby we just get her to get a few words. Today she stands and gives presentations of even 30 minutes all by herself. I’m sure we will do this well and she will be a winner in times to come. We never gave up, we never give ourselves a choice, and we will never give up in future as well. For the moment we shared try to work around these challenges and make it as easy as possible for her. After all it’s the resilience and persistence that will make it happen. In the process I’m sure we will find hands that will support us and comfort us when we need it.

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. 

Motherhood challenge

Today was a very busy day! I had many mothers that needed help. What I am realizing is how complicated it looks yet it’s very very simple. Speech delay for various reasons. The age ranges from 1.5-3 and most mothers are concerned about the children not being able to speak. As I ask for videos I realize so much has changed from the time I became a mother 23 years ago. Mothering has become a difficult task and it has different kind of challenges. The speech delay is of a concern early by parents. And rightly so. Reasons are many and as I watch the videos...I find most children don’t have proper diagnosis. Most mothers are waiting for diagnosis, have diagnosis but aren’t too sure if it’s right, have speech therapists but I am not happy with what I am seeing. It’s unnatural and is taking away the joy of learning in children. They are not interested or just have too much going on or can’t process all that’s happening around and so speech delay is happening. I had many conversations today...few were feedbacks and progress of sessions done few days ago and few were new! It’s getting more clear to me that the kids born today shall have lot of challenging situations creating issues with speech. I am not surprised that most kids aren’t talking due to various reasons due to the environment around that’s not conducive to learning language and maybe are being termed autistic or being given other terms. Decades ago we barely heard of autism, hyper or ADHD. Today kids are quickly being labeled. Most cases today that I have do not look autistic but require an environment that creates space for learning and is rich in language. Mothers today are anxious and the need to make their kids smart is putting a pressure of different kind. Kids have tons of resources which they don’t need. They just need a space that just lets them be kids and to let them enjoy a natural and organic way of growing up. Few mothers have told me how well they are responding after a session with me. The autism tag seems to be under question and they are having lesser pressure and are enjoying teaching or learning with the children. It gives me so much joy as that’s how it should be. Let’s not separate the mother from the child but make learning or therapy a part of everyday life. Most therapies look like a wall that’s so hard to climb. I am hoping to break more of these walks and connect more mothers with their children. Grateful that I have so much to offer to mothers of today thanks to the mentor I have! Mrs. Alaka Hudlikar I have so much respect for you and can just show the world what good a therapist you are! I am extremely fortunate to have you. 

Say a firm “NO”

Why are we scared to address our kids, refuse few things and to just firmly say a no? Why do we give in to everything they want or need? Why do we want to overprotect them and are so afraid they will be hurt...we are afraid to hurt their feelings , why? Why do we make them feel that they are extremely privileged and have a right to get away with anything? And when situation demands they behave a certain way and they can’t ... we justify their wrong actions! Do we remember ourselves as kids when we did not have this much liberty? This is even more applicable to the special needs child! Having one or two kids these days is a norm and of one is special needs...every rule is bent for that child. My kids grew up with rules and discipline and they knew the reasons and the logic. If it applied to my son it applied to my deaf daughter. No exceptions, no privileges and no obligations. More parents are afraid to say a firm “no”! Is it that hard? We don’t realize we are handicapping them further by giving in to every whim and fancy. They quickly learn that they are “special” in many ways! Life gets difficult when these kids grow up and are expected to change their behavior in public. If they don’t, parents have to give out special offers or bribes and if that is not acceptable, they decide to stay away from public as it’s hard to be judged. Easiest in my view is to teach the special child the same values as your normal child. It gives us advantages...
1. They learn the rules and discipline.
2. They are treated as normal kids.
3. Reducing scope of future tantrums.
4. There is a lot of language exchanged which is another opportunity to increase their vocabulary.
5. You make them independent for a future life and prepared for society.
6. It gives you independence in the future as a parent as you wean them off. You don’t need to be tied for life with that child’s tantrum.
7. Society doesn’t need a bad behavior as parents are afraid to say a no.
8. Saving yourself an embarrassment in public by a tantrum.
As parents of special kids we have a special responsibility. Let’s not burden them with additional handicap. They know no better and hence it’s we who as adults have to support their growth in a positive way. By making them realize the power of no we empower them for life. They are prepared for the world and don’t need an undesired behavior. A “no” can be handled in many ways...at times a firm and at times a soft and at times a distraction! It’s just we as parents who need to hold ourselves and our hearts and do the work. Of course it’s a lot of work and intense sessions. But then as parents it’s for the long term benefit of the child and we as parents...so just go parents...gear up...get your act together and just say a firm ...”NO”! Say it as you LOVE your child. It’s for their future!

Mystery of the inconsistent hearing aid

     

It’s been a tough day for Prisha today. Out of the blue she messaged from school that her right hearing aid is giving trouble !! It switches off if she speaks, hears high frequency and come alive if she presses the mold into her ear canal. Over the years she has learnt to play around her aids to help herself. We discuss constantly. Since yday it switched off a couple of times but today was TOUGH!! Her right HA is our life line! Entire hearing is through that and we treat it like our new born baby or a precious diamond. As a family three of us were stressed. Between the regular jobs we three kept working out on strategies to help her. She kept messaging her issues, plans, strategies and we worked around her strategies and working on trying to get appointment with Geers, her hearing aid store and Mrs. Z who is the best!! They immediately promised to dispatch a hearing aid programmed to her needs on loan which reaches in 2 days!! Grateful and overwhelmed!! It’s so hard to see my girl stressed and trying to cope! As parents we need to not panic but give her assurance and calm her. It’s been exhausting for her!! Once she returned home she started to play around!! For the next 4 hours...we changed filters, hook, batteries from all packets from all countries and hearing aids! All combinations were tried! Yet the aid switched off and worked when she pressed the mold! Confusion and stress besides wonder ruled us all!! Her head hurt but she kept going. Her homework too had to be completed. In all this she kept working trying to get her hearing back ! The mold mystery didn’t seem to find an end. Eventually she pulled out everything and realized perhaps her mold is faulty. It presses the tube inside in intervals. And hence HA stops working. So she changed back to her old ones. Suddenly she was hearing louder and better! But why was it pressing at high frequency and not when she was talking softly...was another mystery. We thought that the loud speech worked on disconnecting the high frequency perhaps!! Can you imagine the stress? Last 14 hours have been full of drama, worry, stress, worry, concern. She changed her mold and we were relived. I took a picture and started to write the post for awareness for other parents who may face this. As I started to write it all down, my brain was trying to figure out the mystery of the mold! Why was it getting pressed? My logical mind wouldn’t give up and as I wrote....it dawned on ME!! As Prisha spoke louder, her jaw opened wider and that pushed her jaw bone such that it pressed the mold with the tube in her ear canal! The tube couldn’t open up unless Prisha adjusted it by pressing the mold!!!! THE DAMN MOLD IS FAULTY FOR THE LAST ONE MONTH!! We had told the assistant last month that the canal of the mold seemed small but he convinced us that it was fine! Prisha was hearing softer and we kept thinking perhaps her hearing is deteriorating( biggest nightmare and fear) or hearing aids are old! What a relief to see her face lit up!! She just came in smiling...mum...I can heater louder and clearer! The HA is working fine and I hear sooo well!! What a relief! Poor kid has coped with so much exhaustion last 1 month thanks to the carelessness of a hearingaid assistant!! She is exhausted but extremely relieved to have sorted it out and getting her hearing back!!  She is doing the happy dance! Relieved parents! We plan to call the company and give standing instructions....only Mrs. Z helps Prisha and no one else!! For now we all can sleep well tonight! Am also so glad I documented this all...as it helped me analyze and solve the mystery of the pressing mold!

Grateful for this

   

An honest feedback to be grateful for

Often times I am asked why and how do I find time and energy to juggle so much writing and sharing. Few said they are inspired, few said they can never do I what I did and couple of them even said it’s a good way to get fame!! I smile at most comments and the last one hurts at times but then I realized they have no idea of my journey nor do they have the depth to understand what I have been through and hence can’t expect any better! If today I had a way of exchanging all my achievements for just one thing and without a second thought or waste of a second I would exchange it....Prisha’s hearing!
    It has been a very tough walk and often lonely where every step required so  much patience and strength to keep doing what I was. With just belief in myself and my work. Only consolation often was a bit of fulfillment after every push. Convincing people isn’t easy and comes with a lot of work and emotional expense. Yet I did as I knew it’s from my heart. I am grateful for every reaction though...negative or positive. Why grateful for negative? Well it helps me to understand myself better, understand the mentality of others and helps me to understand better and deeper about human psychology which in turn helps me to find ways to work around these doubts and questions. Positive feedback inspires me to work harder and with more vigor as I believe always....there is that one person out there who is waiting for my words as she too sails in my boat.
    Today was one such day and I feel the need to dedicate a post to one such feedback that made me feel humbled. She read my posts when I mentioned in a group that I am a blogger she sent me messages after that and I realized how humbling this was. She has no idea how strong she herself is to share her honest feelings with me and has in turn also given motivation to the one who inspired or motivated her! Isn’t that what we are supposed to do? Inspire and motivate each other as life has so many roller coaster rides with blind turns and twists. I believe in togetherness and team work. I believe in giving a hand as in giving we receive so much as well. Women need women as they have emotions that run so deep and being the tender gender she needs an outlet and a helping hand to handle her emotions. Not everyone is tough though we all try. So a hand always makes a difference and we should never shy away from taking the hand not giving a hand.
    Today she helped me to feel again that sharing my deepest and honest feelings aren’t wasted. They aren’t just a vent but are precious words and feelings that perhaps are being waited for by someone across the world. So thank you my friend as I am humbled and overwhelmed to have so much of your precious emotions attached. I am honored to be able to share and hopefully we can inspire someone out there to not be afraid to share her emotions but gain strength just the way we gained by holding each other’s hand in some way or the other. 

On her own

    

Prisha is all set for the new school yet nothing can really prepare you enough. She was anxious from her dress to where she should first go, to her shoes to her concern about old friends and the list was endless. She did return with anxiety, overwhelming mind, fatigue to emotional drain. She broke down few times. I knew this was coming. Listening fatigue is high as she was trying to listen to everything and with a different atmosphere and accents, it’s really hard. As a mother I too was emotionally drained out trying to have control over my feelings and look strong. Seeing her struggle hurts me and it’s natural but we have to fight it out and play this game of life. She tried hard to stay strong and apologized a lot as she wanted to vent out everything. As parents....we heard and as for me...I just sat trying to keep a straight face. But then I knew tomorrow would be a better day. 

    Day 2 at FIS went better. This morning she walked forward and I was way behind trying to see how she crosses the streets and hears noises around her. I called her few times from across the street and she could not hear naturally. Anxious mum kept her face very straight and only mothers in situations like these can understand this feeling. Helping your little special child gain confidence and prepare her to fly by herself. In 3 years she would be all by herself and I need to make sure that with all that we have been through in the last few years , her fears are conquered and she stands on her feet. Moves and changes are hard. This is her 6th school in 3 different countries and hence has had to adapt a lot more with every kind of situations, schools, teachers, classmates  and infrastructures. This change added more as she was returning to the school after 4 years and was looking for similar faces. Things change and she understands that yet somewhere acceptance is what we all seek and so did she. 

    This morning we walked to the tram station and she figured out her day ticket. Watching her go away still gives me a pang somewhere. She was on her own. We still don’t have our numbers and hence depend on WiFi. But I trust her to be smart with her hearing and instincts. 

    At the end of the day she messaged that she was leaving for home and asked me not to come. I was on WiFi and with hotspot she messaged me. It was awesome to know she took the tram, crossed the roads to reach the bus stop and then to the stop near home and walk home by herself. It gave her a lot of confidence in herself specially after the stint in Jakarta where I picked her up each day. It was lovely to hear she was better today. Her anxiety came down as I heard all her concerns. She loved her visual art class, is more calm and has a lesser headache and fatigue. It’s matter of few days....she would get used to listening and teachers will also adapt with her in class. Meanwhile we keep doing what we should....

supporting her with a calm demeanor and a smile stuck on our faces.  My girl is ready to face it all.

Parent reaches out through YouTube

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

Rock climbing story -And she touches the peak!

   

The struggle to climb

Hanging in middle of no where 

Anddd at the top! 

   Prisha never had a great PE teacher all her school years. As a family, I do yoga and that also takes a break now and then. The rest in the family never take exercise as part of life actively. So I never expected much in that area for her as well.
    Moving to NJIS just changed that! Mr. Rusty is her PE teacher who inspires, motivates and pushes kids to do their best! I have yet to find a PE teacher who can stand by his kids from early morning to late evening....watching with eagle eyes! His energy and involvment is truly visible in the way he knows each kid and I saw Prisha change immensely under him! She found it very hard initially to do the pull ups, push ups, crunches, skipping etc! I had a word with him too telling him about our struggle in this area as she had no great teacher who would work on the kids! 

    As the months flew by, I saw Prisha taking pride in her aches and pains, her bruises were her medals she boasted about and each challenge was a motivation itself to perform better! These were real! She pushed herself to run around the field 5 times, do push ups upto 100 and counting and showing off her muscles. We are so grateful to have a teacher who watches her every move and knows her each push closely! She has played basket ball, soccer, badminton, running, etc....name it and Mr. R has done it all with her and I was overwhelmed to see her do each PE lesson with excitement and enthusiasm. 

     Her biggest challenge was rock climbing! It needs the core to push her up. She knew she doesn’t have the power to do it.Yet in the 1.5 years here...3 times a week of PE, she didn’t want to miss it even once. so I knew I should not expect much in this either. I also never really gave it a deep thought as I knew her well. The first day she complained about the pain and challenge and felt bad that she climb on to the top. I spoke with Mr. R and he said he had stuck paper on the top and anyone who pulled it down would get 3 drinks from him! I don’t think it was the drink but just his motivation and involvement is enough to push the kids. And guess what!! She did it!! She pushed her limits and did it! The entire family applauded as she is probably the first to do this! It made me feel so proud as I know this meant a lot to her. Early years truly matter as her early years were under a teacher who helped her push herself and she learnt to be self motivated always! 

    Thank you Mr. R for this! I don’t know if we would ever get a teacher like you! I hope the kids realize how lucky they are to have you. You truly are an inspiration. 

Early intervention supports academics

  

Digestive system in clay

   Can’t stress more on early intervention! Working with Prisha in the first 5 years was very enriching as well as exhausting, yet I see the benefits of it over the years. Talking to her in rich language while showing her things around me, bringing in details, stressing on important parts of speech etc and also always pushing her to think and make a decision, helped us a lot in her skills she has developed today. One such example is in the picture below.

    For biology, she needed to make a 3D model of the digestive system in clay. Now I have always encouraged my kids to use the resources around instead of rushing to shop which is an easy option but it saves money, time and is easy on the environment. She looked into the deep well of her resources in the cupboard and found some left over clay from her previous school( 2.5 years old now, yet good once soaked 😉) and a bag of red wax clay( again 2.5 years old left unused). She rattled off on the phone about it while I did my groceries. I don’t give suggestions anymore as I believe in self empowerment and self help. Due to intense hands on work all these years, she found solutions to problems like...lack of enough raw material, alternatives, finding ways to work with old resources as they were dry, finding the right material that’s plastic coated to avoid sticking, etc. The red wax was new material she worked with and instructions were in Bahasa. So she found ways to work on it. By the time I returned and did the rest of my work through the day...she worked behind closed doors(to avoid me walking into a messy room and blowing my top off) and by night she presented the model to me! Look at the details... the way the organs are piled up like they do in our bodies and then color difference that served two purposes...avoid buying another pack of clay and then shows the difference between organs and the intestines. Bonus... looks beautiful and above all...she learnt about the digestive system in a very creative way! True work of art! 

     Now tell me why art isn’t important....why creativity is for selected few and only academics are important.  We are born creative and art should come naturally. It brings extra zest to learn the subject besides relaxing the mind from the learning pressures. Encourage kids to self learn, take away the pressures of learning by helping them develop their creative sides and help them become problem solvers through this journey. They also feel more pride as it’s their work of art. They also feel good that their parents trust them with their skills and get more confident about themselves. They learn to take failures better and through small victories learn to be self motivated as they grow. Never ever too late....resist spoon feeding, instead let them experiment, fail and find their path to success!! I shall be uploading the project once completed. Hope this post helps someone to see how early intervention supports kids life long.

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 taken...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 do....so 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.
      

Prisha’s 15 th

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She turns 15 today...as 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 easy...no 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.

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…