Tuesday, May 7, 2019

To lose it or not to lose it...

When I started writing this blog little was I aware that it would help anyone other than myself. It was a penning down of bits and pieces of the journey as it unfolded. The lesson I’ve learnt over these 15 years is to never underestimate the power behind any act however small it may seem. Even if it’s just a simple written piece.Its so heartening when I hear from a parent that they had read my blog and used the home programme for speech consistently and steadily and found amazing results. And I had written that piece just for my memory’s sake 😀.

I’m often asked,”How did I not lose it?” What stopped me from going plain insane?”.
Becoming a parent in itself a journey.Becoming a parent of a special needs child is a very special journey as I’d like to call it. My  perspective as a parent altered to such an extent that it opened me up to many possibilities.I was a mother to 2 daughters-one neurotypical and one with challenges.

I can write here about self care, getting that walk in, going out for a coffee, music, books, baking etc.. tips on self care are indeed valuable, no doubt about that! But there’s more to it when you have to be there for your child, waltzing through therapies ,medications, tube feeds, innumerable medical checkups and always that watchful eye out no matter how grown up your child is ..
Self care needs some level of realisation and inner work to actually do it.

What no one told me was that it’s ok to lose it . It’s okay to break down , to panic, to weep and weep till tears spill and dry out;to feel that space where you simply can’t breathe , to ask why me, to question everyone and everything including the Divine purpose behind it. It’s ok to shed the label of super woman/super mum.Instead for me it became all about escaping the anxiety and the panic and it became such a vortex that I’m not sure even now how I was able to get a grip on it and manage to pull myself up out of it.

When I started off my journey as a mother of a baby with a corrected heart and whole host of issues with absolutely no hope,medically the prognosis was dismal.All i had was realms of medical reports neatly bound into files but i had no real answers.
So I’m not sure what I started off with. There was no hope , no hopelessness either. Just a numbness and the acknowledgment that the journey had just begun and I had no clue what was in store.So I had to move with what I had in hand and whatever I could do to help my daughter.

Now when am asked how did I know what I needed to do then especially at a time when I had no smartphone or access to support groups and the plethora of information that one can find nowadays. I allowed myself to not know at times.Ok, in a a way am relieved I didn’t have an information overload.This allowed me to rely on my common sense and intuition rather than struggle with what to do.But it also made space for this strange aloneness that I could not express. 

My focus shifted more inward,more on my 2 girls and husband and home and assimilating how our small world had turned topsy turvy overnight . It also helped me to tune into my child’s needs at a deeper level rather than looking at it as a diagnosis of cerebral palsy. This tuning in helped me through the years with her learning journey, her therapies and recognising what worked for her and what didn’t, why not to push her into doing things she didn’t want to... it’s all about common sense but as parents the urge to see one’s child as so called ‘normal’ is so strong that it takes some level of courage and conviction to understand it.

However challenged or dependant your child with disabilities maybe,verbal-nonverbal,tube fed or not..your child is a living breathing expression of Life in its purest form who has chosen your family in this lifetime...tune in, allow yourself to just be, forget the comparisons on the path( parenting isn't a competition),nurture yourself and watch your child absorbing this ( i didn't until my body warned me).You are doing the best you can at all times always:)

The above image was striking to me because it took me years to understand that its ok to put down the 'yesterdays' in a blink of an eye. And keep going with the moment, forward..no looking back!

Tuesday, July 4, 2017

Experience with Human Library as a book :)

Something not necessarily connected with Learning disabilities and cerebral palsy but there has been a compulsion and desire to pen this down into words. The experience,the ensuing emotions,the feeling of being centred and connected with my authentic self-all of it and so much more post the Human Library experience on July 2 at Mumbai ( Title Waves)

A bit of a background to it- Human Library is definitely something extraordinary and one of a kind – a speaking library, where the books talk! Ronni Abergel, a resident of Denmark came up with this unique idea in 2000 and  over the last 17 years, this initiative has spread across the world.
This initiative allows you to walk in the shoes of the person who has experienced it.
The reader gets to select his/her genre of story and these stories are real experiences of people, which they themselves narrate with real emotions and perspectives.
The names of the books are anonymous, and the readers are also free to keep their anonymity as well. Most stories follow a pattern that revolves around certain hardships or traumatic incidents that the human books have been through, which in return have invited some form of social prejudice. This helps the readers understand things from a very different perspective which has been personally felt and experienced by one.This is also a wonderful platform for people with varied obstacles, issues and views in life to step up and be heard by a larger sector of the society.

When I filled up a form sent to me by my sister and I was chosen to  be a book,i kind of knew what I had to do. however I did need to understand for myself why I was choosing to be a book and what was my purpose behind it? once that fell into place,i had to create a title,summary and then a gist of content that could help me converse with my readers.

I went into this with no expectation. As a deaf person and a mother to a child with cerebral palsy,the challenges have been life altering but am no disability activist. My goals have always been towards tuning in within,moving towards acceptance from denial and understanding that the situation has to be dealt with so there it is-deal with it. The conversations/sharing with my readers allowed me to look at my own challenges through a whole new lens. No one can 'see' I'm deaf so its an invisible albeit real challenge. The questions asked were varied from wanting to know what a hearing aid looked like to how did I cope and how did I lip read? To questions about what struggles I faced as a woman/mother, about my daughter,about cerebral palsy. I had an amazing bunch of readers and I believe that I was blessed they chose me as their book :)

A book  was allotted to 5-8 readers at a time for 30 minute sessions. This was not just about me narrating my story. It was also about allowing my readers the space to ask questions,have a dialogue,simply ponder and reflect or just be. I loved the fact that I was able to flow with my story differently each time with each set of readers and how seamless it was. I felt no discomfort,in fact I felt more centered than before. I realized with the feedback and questions how much my story and sharing helped so many readers who asked me about support groups and therapies and coping strategies. Something that is so much a part of me-my deafness ,raising a child with challenges that leaves me jaded at times,could mean so much to another person listening to me- it made a world of a difference!
I'm just so glad I got to do this. To be a 'living book'!

Tuesday, July 29, 2014

What's important and what isn't....

Sometimes simple acceptance is the key. Clichéd it may sound this word ‘acceptance’ but ask any mother of a special needs child the guiding principle behind raising her child—it would be ‘acceptance’.

It’s a process. It happens with awareness and effort. It needs reminding oneself periodically. It’s not a miracle. Just knowing and understanding and finally accepting what ones child is capable of, how not to focus on weaknesses alone and how to work with what one is good at. In childhood it’s tough. A child wants to do whatever the other child is doing-jumping,running,somersaults,arts and crafts classes—the list is endless. The same applies to academics. A child wants to do as well as any other in the classroom if not better. 
But what happens when the child knows she cannot cope in her classroom however hard she tries? She lags behind, needs more support and ends up helpless, frustrated and finally anxious.

By the end of grade 5, Ananditas anxieties had hit a high.  It took a while to figure out that the academic pressure had built up so much within her- not just the vastness of syllabus but also her efforts to cope had failed her. Everything made her feel different-her limited mobility, her limitations on the sports field and now the academics. Her anxieties manifested in many ways. I’m digressing here because this blog post isn’t about anxieties.

Like her as for me, it’s all about knowing what’s important and what isn’t.
She knew she could not cope. I had to identify it and help her out with the support from her school.

Now she is in grade 6, in the resource room studying with support and help of a special educator with goals in place for her. Her academic stress has vanished. She learns one on one and is relaxed and happy about going to school. If she has a problem she knows she has the freedom to voice it and share it with her teacher and counselor.

What’s important here for her is the environment. When she is at peace with her environment her anxieties dissolve and she is the child that she is-fearless, curious and happy. She asks questions and doubts freely, learns visually-which she is best at and has more time to herself once she gets back home. She does have home work and assessments like other kids and has learnt to manage her time and activities effortlessly.
What’s important for her is to be okay with the fact that she is different and develop her own sense of self.
What’s also important is to for her to focus on what she likes doing. The rest will fall into place.
What’s important for her is to be okay with her anxieties when they arise, her fears, her need for order in a bid to control her life-to just be okay with it.
What she doesn’t have is companionship at school. That’s important, very important as well for her growth as a person. But somewhere when you gain an advantage you also lose a bit of what you really need. The advantage of learning under a special educator will tide her over for her future; help her to enjoy her learning journey at school. But in being different there is also a tinge of isolation which she has accepted. There ‘acceptance’ again! 

When one accepts one finds a way to work around it, work with it, and find solutions that work. And that’s how it’s happening for her.

The rest isn’t important...

Tuesday, June 18, 2013

Learning strategies-Simplifying the process

A normal school textbook of any school consists of many chapters. Each chapter if you notice has a lengthy introduction and too many details before arriving at the actual point.

For a child who has issues with absorbing too much of information all in one go,integrating it and reproducing it by memory in assessments  can be not only frustrating but also cause immense exam anxiety.

I always wondered why the same information could not be more concise and succint so that the child could simply find the one line answer to any question.

I decided to experiment using a text book. I broke down one chapter of 12 pages on Latitude-Longitude into 2 pages of simple objective questions and answers. Thats all it took. A 12 page chapter consolidated into a 2 page lesson. It worked brilliantly. Not only did my daughter find it easy to read and understand, she also found this method an easier way of recalling what she had read.

Along the way while doing this, I discovered I had learnt or relearnt a lot too.

If you were to look at it simply,all it means is a simple breaking-down of information.Breaking down a whole into smaller parts. If you cannot really break it down,try fill in the blanks or draw a tree or a mind-map. All work the same way.

Tuesday, March 5, 2013

Original Movement Therapy for Children with Challenges and for just about anyone

Anandita and I have recently started Original Movement therapy sessions with Devika Shekar. If you ask me,i am not too sure why i decided to go ahead with it-OMT sessions for Anandita and Body mapping for me. 4 sessions down and both of us have figured it out thats its a happy space to be in. Of  movement and tuning in . Of silent moments . Of a zone where we can simply be ourselves.
Am sharing more information on OMT and Devika here. She is keen to work one on one or in a group with special needs children and children with challenges . She is one of those rare few whose heart is in the right place( if you know what i mean :) )

Original Movement Therapy™ comes from the thought that all true movement comes from within. Devika Sekhar, trained and worked in Dance Movement Psychotherapy in the UK and now practices in India. Devika Sekhar is also an Associate International Member of the ADTA.
Original movement therapy comes from the thought that all true movement comes from within. This original movement is lost over time due to our hectic schedules and don’t have time to reembrace it.It is also a mean for those unable to speak or people who are dealing with clinical issues that are hidden within the subconscious ,beyond the reach of language.

Original Movement Therapy Sessions
This different approach to therapy is unlike ‘talking therapies’ as it worked through movement, art and sound. This is also not a dance class and prior knowledge of dance is not necessary. It is important to remember that the therapist will be working alongside you to be able to express yourself. Through this we will be looking, taking chances and experimentin  g together.
These original movement therapy sessions offer a welcoming and safe space for those wishing to explore themselves and wish to make a positive and lasting transformation in their lives in a creative way.

This reconnection between the mind and body gives way for ones own story and in turn acts like a bridge between the unconscious, possibly offering new insights.
Original movement therapy is suitable for both children and adults, both individually and in groups. It is especially recognised when working with families with children with special needs or families going through some form of emotional ordeal. For the child who could be at risk at being 'labelled' as a problem at school, this therapeutic help is a chance to break a probable cycle of negative behaviour and replace this with more positive alternatives.
This intervention during the childs early years can have a preventative effect - for example by helping a child with dealing with anger issues could prevent him from lashing out later on in life.
Some problems which can be worked through original movement therapy are;

Behavioural issues; anti-social children and adults
Those with Autism
Emotional issues
Relationship difficulties
Anger issues
Life crisises
Those who seem to be directionless in life.
Self awareness

It is also important to note that one doesn't have to have something 'wrong' with them to come for OMT sessions or want to take part in workshops. Goal specific workshops/sessions are designed for those in the corporate setting/organisations/centres, schools or NGOs. Kindly contact me if you'd like to know more
** NOTE: All  individual therapy sessions are adapted to suit the individuals needs and done after a prior consultation**
Check out the page on facebook


omtpune@gmail.com - her email id


Tuesday, January 29, 2013

Support group in Pune for Cerebral Palsy

  • Finally there is a support group in Pune for all parents and caregivers of children with cerebral palsy.

     Its purpose would be primarily to :

    * Our purpose in forming a support group would be to provide an ideal environment where parents-caregivers can receive emotional/physical support.

    * share information-medical, resources, life skill strategies

    * share feelings, how to deal with ones stress.

    * Essentially a zone where one has somebody to talk to who understands.

    * Information shared in support group remains within the support group

    Details of the 1st meeting are below.
    location: KPCTMALL,FATIMA NAGAR,PUNE on FEB 10th 4pm to 6 pm
  • We are planning to get together to form a support group for all parents/care givers of children/young adults with cerebral palsy. Our focus for the 1st meeting would be on getting to know one another ,introductions and what exactly we are looking for from a support group.

Tuesday, February 14, 2012

Random thoughts of a mom

Twenty years hence it is not going to matter what grades my child scored in Math( or Language,Sciences etc etc) when she was in Grade 3.

What’s going to matter is if she has been able to grasp the concepts, has retained them and is able to apply them in her daily living tasks.

What’s going to matter is her ability to live life independently, have healthy relationships and have meaningful conversations and discussions with whoever she chooses to interact with.
Friends with whom she can be herself, handling her money (save, invest, spend), understanding her own emotions and her limitations are what will make her life more fulfilling in a deeper way.My child's destination is wherever she ends up. All I can do is to support who she is and open up the world to her so that she can expand her interests.

A grade cannot determine or define an individuals self worth.