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. Clich├ęd 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.

Thursday, August 11, 2011

From Marianne's blog

Dear School Personnel, Community Members, Teachers, Parents and Neighbors
Posted by Marianne .

To Whom it May Concern,

I am the parent of a special needs child. I was overwhelmed, confused, heart broken and struggling to unravel the complexities before me.

Please do not pass judgement of me without knowing why I did not attend the school PTA breakfasts or community picnics. Please take a few minutes to understand why I did not take you up on your offer to have lunch or grab a cup of coffee. Although we see each other in the supermarket or at school functions, I don’t think you really ever knew me, actually, I can guarantee that you did not know me because just as my child was different, so was I.

I was in survival mode to keep my family in tact and to give my child the best quality of life possible.

I was presented with parental decisions that have torn me apart and kept me up more nights than I can possibly remember.

I had spent most days of the week at therapy and doctors appointments and most nights up researching treatments and medication options.

I was forced into isolation at times due to the stigma and misconceptions that are epidemic in our society.

I became proficient at prioritizing my life and learning to let the little things go, to look at others with compassion instead of tabloid material and to turn a blind eye to the stares or ignorant comments.

I did the best I could.

I survived.

I am one of the lucky ones, my child has blossomed and has exceeded all our expectations.

I have now become strong, I have become confident and I have become a fierce advocate for parents of special needs children. The growth did not come without much pain and many tears but it came.

So I ask you, please

The next time you see a parent struggling with a raging child, a child terrified to go into school, a child making odd movements or sounds, a child that seems to be in a world of their own… .Be kind. Give a smile of recognition for what that parent is going through. Ask if there is anything you can do to help, give them a pat on the hand or offer for them to go ahead of you on line.

The next time you have a birthday party for your child remember that their child has a hard time with a lot of sensory issues and social situations. Please send their child that invitation and know that more times than not they will not be able to attend but appreciate being included. Understand that in order for their child to go to the party they may need to stay for a little while and please make them feel welcome. When they let you know that their child cannot make the party consider inviting that child for a one on one playdate or an outing at the park.

The next time you are grading homework papers please understand that their child struggles, some with learning disabilities others with the exhaustion of their disorders or the obsession with perfectionism. The Perfectionism is not necessarily to have the answers right but to have it “feel” right for them. They have spent hours doing what most can do in ten minutes. A paper returned with red circles and comments only hurts a child’s self esteem and causes school anxiety. Please understand that when they see the school come up on their caller ID their hearts sink, remember to tell them about all the gains their children are making as well as their deficits. Take a minute before that call and know that they appreciate all you do and want a collaborative relationship in their child’s education.

The next time you are in the teachers lounge, please do not discuss their child. Please do not make negative comments about their parenting or their child’s behavior, it gets back to them and it gets back to other parents in their community.

The next time you pass the cafeteria and see their child sitting alone please consider inviting that child to eat lunch in your classroom and be your helper that period. Consider working with a guidance counselor to set up a lunch buddy group in a different area.

The next time they are at the CSE meeting planning their chid’s IEP know that they are educated, informed and confident knowing special education law. Know that they have found the courage to stand up to conformity and will explore every option to give their child the differentiated educated that will show their gifts and not just their disabilities. Understand that educating a child with special needs is one of the most difficult tasks a parent can face, know that the last thing they want is an adversarial relationship. Please show them the same respect they show you.

The next time you are creating an educational plan please take into consideration that their child may have specific interests or obsessions. Foster those interests, instead of taking away that art class for a resource class consider adding an art class instead. Think outside the box, these parents do.

The next time you see that child in a wheelchair unable to speak or control their movements, don’t stare, don’t look away, say hello. Do not assume that because this child is nonverbal that they are not intelligent or do not understand the awkwardness that you feel. Take a moment out of your day to show kindness, support a parent enduring incredible pain and just give them a smile.

The next time your child comes home telling you how Johnny or Susie is so weird, take the time to teach about differences. Take the time to talk about compassion, acceptance and special needs. Please remember that your child learns from you. Be a role model, mirror respect and discourage gossip.

The next time you hear a comment about how out of style these kids are, educate about tactile sensitivities and the fact that these kids cannot tolerate many textures and fits. Imagine what it would feel like to have sandpaper in your stilettos or tight elastic holding on your tie.

The next time you see an out of control child do not assume it is bad parenting. Understand that many of these disorders have an organic basis, are biological and are real illnesses. When you hear the words mental illness, take out the “mental” and remember ”illness”.

Know that it is this generation that can stomp the stigma and create a world of acceptance.

The next time other parents are talking about “Those Kids” be our heroes, stand up for us.

The next time you see a special needs child know they are not just special in their needs but in their brilliance as well.

Take the time to meet our children. Take the time to know us.

AFTER POST: Thank you for the tremendous response to this writing and requests to post or share on your blogs, websites or educator sites. Feel free to copy in its exact form and use author credits to comply with copyright.