Wednesday, April 29, 2020

Acceptance...the first step

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

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

Tuesday, April 7, 2020

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. 

Monday, April 6, 2020

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!

Monday, November 4, 2019

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!

Wednesday, October 2, 2019

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. 

Thursday, August 15, 2019

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.

Tuesday, July 9, 2019

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.  

Sunday, April 28, 2019

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. 

Monday, April 8, 2019

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.

Wednesday, March 6, 2019

Soul talk with my child

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

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

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

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