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.