Tuesday, November 3, 2015

Reflection on social attitude

I am reflecting a lot on attitude of people towards disabilities these days. The lack of awareness,uncaring attitude, callousness and lack of tolerance is what I see in people around them. It makes me wonder what kind of people we are building for future in our kids. The drive to make it senselessly with barely any empathy in our kids is very disheartening. I wonder how they will deal with disabilities if they had to face it in future. I feel sad looking at them. The fault lies with us adults. To meet deadlines and prove a mindless game and drive we are forgetting to make the kids sensitive. It's money that is driving us. The ambitions to make it in life at any cost. 
I see my community is in a mad rush. They have no time to breathe and enjoy life. The fight to finish is on and shall never stop. The small things we did as kids these kids will never learn as they are told to perform from the day they enter school. Life shall pass by and they will learn this cut throat attitude and lose all sensitivities and sensibilities. I see adults talking rudely and that is picked up by young minds they follow it as that's what they all see. Is it what we want for the gen-next? 
These days with so much exposure and and diagnosis we have knowledge of so many new issues and the future shall unfortunately bring many more. Things we never heard in our times, today are many more and the future would bring many more. How will this generation deal with disabilities? I can foresee a lot of frustration for them as well as isolation. Also I see lot of them accepting it and doing little about it coz they want to live for themselves. They would be happy to delegate their job to "specialists" who would mint money on their account while they worked harder to earn that. 
I feel it's very essential to educate the young minds and make them better people. A little moral science lessons we did as kids would do no harm to them. I often hear mums telling the kids to "give it back" ... Instead would love to hear "be kind and patient and help those who need a hand". That's the community that would bring peace, friendships , feeling of well being and integration around. Till then we can stop, look around and reflect on what's happening around us and only feel the pinch and the pain when it strikes us. 

Monday, October 19, 2015

Extreme behavior

Why do children with special needs different in behavior often? This was asked by me today and it made me think. One asked me that she had a child in class with damaged right ear and so used mostly his left ear. Why was he so aggressive? She often got strict with him.He glared at her. I look at Prisha, she is often scared to offend anyone. She watches carefully and gets into a mode where she is scared to say a no for the fear they may feel bad. Her ques often is...' am I hurting your feeling?"
The answer was simple. They are already dealing with so much of issues with their disability and coping with life that its extreme behavior that they end up showing. Either they rebel and try to push you off with their bad behavior so they don't have to deal with you or they go defensive and are afraid to talk. For these tiny human beings the pressure is quite a bit. The social pressure being immense as the society isn't aware of disabilities and find it hard to understand the various needs. The pressure to perform is huge at schools, home, outside home and inside.Its a kid of self defense mechanism and I wish more could go under and reach below that surface. As adults we find it hard to deal with social behavior and can go berserk. How do we expect them to deal with it by themselves? Patience and immense understanding is required. There is a difference between the laziness they could have to avoid work and the ability to cope with pressures. A very empathetic and deep person would be able to make out the difference. Its very important to find such teachers who would understand these needs of such kids and help them deal with these pressures better and help them grow better. Once they know the teacher or guide means well, the extreme behavior shall turn into immense cooperation and the session could bring joy to both. I wish we are more empathetic and provide an atmosphere that is inclusive that helps such kids to bloom and become an asset to the society.

Sunday, October 18, 2015

Moving to Jakarta

        As her mum I have learnt so much. Being human first, empathy, , passion, pressure, struggles,end of roads, uphill climb, stick out my neck, strive to be different, seek help, deal with depressions, elation, eyes welling up,questioning, hugs, lump in my throat, being called a cruel or pushy mum.....list is endless. All these words are often a part of my life. Yet I strike to make myself different by doing what most would say...don't. I just can't seem to agree with what most say. Am I crazy? No , coz that is what has got Prisha so far. Moving here to Jakarta hasn't come easy. A very difficult place to survive in, language, medical facilities being poor and poor communication makes it hard as does human ego of my own community. There are extremes in people around. Extremely loving and helpful and the other being unconcerned and unaware. The good always covers well over the bad though. I have been extremely fortunate to find some very good support and help 24*7. With Prisha we need to have a lot of good understanding around and I am always alert towards her needs.
       Going to an audiologist was a huge challenge , our guards up and we decided we need to go to Singapore for all her needs as they seemed more shocked at what we achieved in her. The look they had when they saw her videos of dancing, singing etc. and looked towards me to question if she really had deafness. Its sad that since they don't find the right advice, the kids get neglected and end up in special schools.
      Its been nearly 3 months here now, each day has been a challenge in its ways. Most of my friends were excited about me having help and services here. No one can realize that its not our priority at all. Our most ordinary service and help here is getting Prisha settled at school(impossible without Ms. G..... not just school, she is my emotional anchor here) , getting her teachers to understand our issues, being empathetic, getting her a good audiologist, getting her good friends, letting her understand her studies and deal with the pressures of a different kind.She tells me these days not to change her school again as she loves what she is studying. She says there is a lot or pressure but loves it as she is learning so much more compared to the last 5 years!I was surprised and proud of my little tigress. She is extremely hardworking and sincere, very sensitive and scared of  offending anyone. Below the surface there is a lot going on coz of the last 1.5 years difference and change. Her brother moving to university, our sudden move here, school changes last 3 years and her close relationships being left behind. But as always we believe in hard work and giving her support. Standing by her every need and flaw and making up for what others can't provide. many say she is lucky, I say we are lucky as she made us very human and caring. She gave me a chance to see my capabilities, she gave me an opportunity to work, she made me human, she made me stronger, she gave me recognition and many letters of appreciation. Walking into a room and being given a chance to speak about a subject most do not know or care about and then leaving with claps on my back or looks of admiration is what she has given me. I do not mind being too vulnerable and seek help, eyes well up now and then when I am stuck in a situation coz then I get this very genuine hand to pull me up and hold me through it taking me to the other side. I have earned some very valuable relationship in the process and a chance to make a difference in a very difficult world. I was so overwhelmed when I met a deaf young man who we want to get the best help possible. His dreams typed to me on whats app as he is deaf mute left me feeling very humble. His parents telling me that they wish they had met me earlier left me overwhelmed. Now as we work together to get him the right advise and help to get into a university feels gratifying. For me this is what I seek and look for. The smiles and tears of gratitude is worth more than any help, service and treasure. Met some people who understand what I say and mean and am grateful for that. Its not the life of ordinary that I seeked and received and I am grateful.           Tough it may be but few years down I see her as an elegant young lady to make a difference in the world while I look for an alternative career from being a mum and home maker with a difference to a lady who is out to help many like her. I see my greys and lines smiling through welled up eyes at a vulnerable mum like me and a helpless kid like her. I owe all this strength to my one and only ma....Alaka Hudlikar. Her words ring in my ears always and her blessings always give me the strength to walk a path that is lined with unknown and unplanned events. I am blessed to have these two angels in my life which made an ordinary life into an extraordinary life. God bless them and keep them close to me always. I want to even let those souls know (they know who they are)I am grateful to them ....all who have seen me through this journey never letting me go and never letting my hand slip from theirs. Life is extraordinary and we are living it.

Friday, June 19, 2015

Thank God for her language

Each time Prisha is on her own and in situation which can be unnerving for us parents , I feel so happy she has language to depend on and has acquired it and solves her problems. Today on the way home she went to buy the ticket on the automat for the tram and it wasn't working! She called me and I asked her to press buttons again. It didn't work, puzzled that she was. While I started to rattle that she should ask for help... She was already at it! She asked a lady who explained that she should take the picture on her phone of the automat and keep. If the ticket checker comes to check her ticket , she should show the picture and tell him that the automat is not in function. Then she won't be fined. She made me also speak with the lady to confirm and we were so happy that I didn't have to rush to school to pick her up which would have been quite a job!! So proud and happy that she has language and these small situations are making her gain confidence in herself and making her independent! This would have been so hard with signs and lip reading ! Thankful for the spoken language and alaka ma'am! 

Friday, June 12, 2015

Inspiration to dance

When you have speech and language nothing is impossible. Hard work is what gives you success. Prisha has made a sister here in Diya and she finds her so pretty and talented. Diya plays a piano and does an Indian dance form bharatnatyam and is now inspired to learn it. Will she ? Will we get a chance? Future will tell us. I am very happy that she is inspired by Diya and had a chance yesterday to meet a few very talented artists who came to Germany to perform. Down to earth and fun people who inspired and encouraged the youngsters! I hope Prisha finds an opportunity and such inspiring people. Diya is great inspiration for her and hope they always remains connected!

Wednesday, June 3, 2015

Return of a big girl

As I wait for her to return from her trip,I sit with my coffee and a snack thinking about the last 3 days as teacher of ESL classes and the letter I received from the school for the presentation on deafness. How one thing in my life has changed everything in my life and made it more meaningful! I may not have a career which brings me money but I have a satisfaction that most would die for! I am thankful for what I have got from my two angels ...ma'am and Prisha !
Another hour and she would be here... How would she have changed in these 3 days? As a mum to her ... Life has been different , defying and challenging on every level of my being.... Physical, emotional , mental ! How to do things that are right for her, how is it that I can make life easier for her in the long run coz trust me life is HARD! What lessons can I teach now so that she can deal with life better? These and more always work on me. Most days I take decisions about her without asking anyone trusting my feeling as a mum. I don't want to paint a rosy picture for her coz life isn't a bed of roses, after I am gone , she has to deal with it. Empowering her such that she can live life big. I wait for that bus to return now... It took my little girl as I watched from my ESL  classroom and shall return with a grown up young lady who dealt with issues by herself, took decisions herself, no calls to mum ,no help from mum... Just she and her friends! Can't wait to hear her stories!

Monday, June 1, 2015

The first independent flight out of our nest

As my little girl readies herself to go off on a 3 day class trip to see castle and study medieval history , one more person has to ready herself to be alone by herself after 19 years in a home. After the children arrived there was never a peaceful and dull moment and I wished that soon I should have them out into their lives. These 3 days would be kind of testing moments. My Prisha who never stayed away from me shall be with her group of teachers and friends with no phone on herself, no news is good news. All my support and confidence shall hopefully bear fruits, all that I did to get her to be independent depends on this trip. As a mother of a child with hearing impairment it's a moment not easy to live. What if her batteries are over, what if she misses instructions , what if she can't hear, what if .......Unsteady feelings of confidence and weakness , faster heartbeats and lots of mixed emotions inside of me. I have been able to build enough support in teachers through my work at school ... Yet .... !!!! I am a mum of a very special kid who lives in my soul and have been one who put every single letter in her vocabulary. Today she is going to be on her own and will bring back lots of words and sentences which I shall cherish! Praying and wishing to almighty to take care of her. We both are overwhelmed but I have to keep a tough heart and show an unaffected face as always . Tonight is going to be a long night as will be the next two. Heart beat .... Please stay steady.... One beat is going away to get independent !

Saturday, May 30, 2015

First tram ride

My star ! Big girl now.
 27th May 2015 will be one of our very special days in this journey. The fear with a child who has needs are too many. We always felt very insecure about leaving her anywhere alone. My husband often feared during travel in trams etc. I wanted to empower her and allow her to make it her personal journey and achievement.

Its easy peasy
So, we are soon moving from Germany and so many new changes are happening. I have so much I can pen down but unable to as time is short. But this needed an immediate post and so here it goes. We sold our car and are now depending on friends to taking us around. They are kind they don't allow us public transport. But yday was a day we had to try doing it. Normally it was decided I shall accompany her from the school just as I have been doing last 7 years or so. But yday was so caught up , I couldn't go to pick her up. So the previous night I instructed her about the journey back home. Explained how she had to go to the touchscreen of the automat , look for the British flag to change instructions to English and then follow to buy the ticket. She was nervous and so was I. The next day she attended school and at the end of the day she called me. She said "I reached the tram station. Now I touch the screen. Entered single ticket to our place , then one child and then there comes the money part. Put the money in and there comes the ticket with the 5 cents back ! " I was dumbfounded as I didn't expect it to go this smoothly. She then waited for the tram.

I called her in few mins and she was on it and we kept talking where she told me where she had reached. Soon she said mum next is our station. I suddenly realized I was on the wrong side of the station!!! In my excitement and nervousness I was waiting on the wrong side. I ran like crazy to cross to the other side as I had told her I would take a video of her coming in. Somehow made it in time. I was ready for my little star to walk into my hug. My excitement was nothing short of the kind you see in fans of big stars. The tram slid in and I saw her peeping out from behind the closed doors. She soon rushed into my waiting arms. So proud of her ! My star and princess who makes me believe that I am doing the right thing as a mum. Her support and belief in me and mine in her gives me so much strength.
Feel her confidence

This step has given us a lot of strength and also gave her a lot of confidence. She seems pretty sure about being able to do it. She did this again next day and today we decided she would help me too to buy. She and I travelled together and felt so happy together.

This does not mean that we should be doing the same. every person's situation is different and I knew it was  safe enough to take the risk here. I knew what mistakes she ould make and how I could rectify them. She was on call with me and had followed all the instructions well. She did not take risks either and trusted me and my instructions. In Germany I could take the risk of her getting off on a wrong station as its safe. I would not take the chance in all countries and places. What works for one doesn't work for all. One should take calculated risks and nothing that should endanger the child's safety and security.

I am so proud of her and this is another small feather in our cap. It might not mean anything to many people but to us......its one more very proud moment.

Monday, May 11, 2015

Latest on FB

This what's happening on Facebook, lots of updates on trails of Sky Q from Phonak and also the tricks we worked in helping us tune the aids better.


Thursday, February 12, 2015

Made some music

        Today Prisha had her music inference. Here they showed us what they did in music. Her music teacher is a very kind and friendly lady and really has helped Prisha feel a part of music class. They did a cup song and then a story which had music incorporated in it. It was heart warming to see her perform confidently. Then she sat with a xylophone and she and I had to compose music.
         I have been on stage and have enjoyed singing Indian music. But never learnt how to write it. It was so good when Prisha explained and then we wrote some notes and beats. Then we heard what it sounded like. To one she said she didn't like and screwed up her nose. And then she and I agreed on the new change and we heard our little piece and loved it. It felt so good to see her confidence. I hope she continues enjoying music this way.
       She has even made a song for her brother , a very emotional piece which she sings when her bro leaves to go to his home in Holland. The words and tune set by her. I am blessed to have her in my life.
       On another note, she came to me tonight. She hates getting her ears cleaned. The wax pulled out hurts her ears. This time we are putting oil to help the wax swell and then we shall get it washed out.She says a few things that make me cringe. She said sadly , " I wish mum I had no issues with my ears. I hate wearing aids, wish I didn't have to work so hard and wish I was like other normal kids. Was I born dead? When did u know I couldn't hear? How did you know? Oh mum I wish I was normal! Wish my ears could be repaired and I could hear without aids !! " How do you deal with this? You just cringe inside and wish God could hear this cry and repair her ears. Wish she didn't have to deal with so much. Wish kids could understand her fight with issues they take for granted in class. Wish they were kinder and supportive. Wish sometimes life was easier for her.Wish she grows up really fast and can feel she is happy and cheerful and she is complete and doesn't need to be sad. Her parents and family are so proud of her and will support her every way possible.