Dementia - डिमेंशिया

डिमेंशिया एक ऐसी बीमारी है जिसमे मुख्यतः स्मृति कमजोर होती है और धीरे-धीरे जीवन के हर पहेलु पे डिमेंशिया का असर दिखने लगता है| डिमेंशिया से बाधित लोगोंको हमारी तरफ से जितना हो सके  समंजस्य दिखाने की और उनका जीवन सुखकर और सुसह्य बनाने कि जरुरत है| ये हफ्ता डिमेंशिया के बारे में जाग्रति लाने के लिए' डिमेंशिया अवेयरनेस वीक ( Dementia awareness week) के तौर पे मनाया जाता है| अगर आपके परिवार में किसीको डिमेंशिया है या आप किसी डेमेंशिया से बाधित व्यक्ति को जानते है तो जरूर उनको कुछ ख़ुशी के पल देने की कोशिश करें| डिमेंशिया में स्मृति कमजोर होने के बावजूत भी संगीत के सम्बंधित स्मृतियाँ काफी हद तक अबाधित रहती है| मेरी तरफ से यह एक छोटीसी कोशिश कुछ पल संगीतमय बनाने कि|

Dementia is a condition that mainly affects the memory and gradually has an impact on every aspect of life. It is possible for people with dementia to live well if people around them have a better understanding and show compassion. This week is  marked as Dementia awareness week. If someone in your family has dementia or if you know someone with dementia then try to spend some happy moments with them. Although people with dementia have poor memory, research shows that memories related to music are unaffected to some extent. This is my attempt to revive some musical memories of people with dementia who may have heard this song before :)

What a journey it has been!

The Diuli Team

Pretty necklace made by Ashwin

In July last year, I visited Goa and had the most rewarding 6 week holiday. Meeting family and friends, feeling the warmth of relationships and relishing the yummy Goan food. I cherished the beautiful sunshine, sea, sand and rain all at the same time. Going back to roots is certainly an overwhelming and rich experience. Personally, the most fulfilling holiday ever!

   Whatever I am today personally and professionally started in my beautiful Goa. I grew up in Goa, studied in Goa for most of my life and went to Mumbai to study Diploma in Special Education. Having done my Special Education training, I came back to Goa to work with one of the most dedicated and passionate teams one could ever find. Whenever I am in Goa I definitely visit my Guru and a source of inspiration, Dr. Nandita de Souza. Nandita or Nandu (as we all like to call her) was the leader of the awesome team I mentioned earlier and gave us valuable guidance and impetus to give our best to work with young children with autism. During this visit I met Nandu and one other important member of that team – Elizabeth Kurian. Elizabeth is a dedicated mother and successful architect who was one of the parents of children I worked with . She is very knowledgeable, dynamic and wise person who has taught me a great deal about endurance and hope.  When I met Elizabeth she updated me with the current activities of the parent group 'striving to infuse inclusion in every stage of their child’s life- from schooling to adulthood so that they will be a part of the community’. The parent support group is called TIES- Towards Inclusion Everywhere in Society.  Elizabeth had also brought a lovely present for me, a beautiful necklace made by her son Ashwin. Ashwin is one of my first students and the beautiful necklace made by Ashwin has a special significance. It’s also special because it tells the story of Autism in the Goan context. I am so lucky to be a part of that story! Like Elizabeth and Ashwin many other parents are still in touch with me. I love to visit them and see how they have developed and achieved so much for themselves. 

When I started working in Diuli (Konkani word meaning little mud lamp), the team was focussed on understanding autism and imparting skills to children. There were not many services for children with autism and education was mainly provided in special schools. We were inspired by the notion of inclusive education and inclusive society; however, there was no such inclusive model in practice.  Diuli was the first preschool for autism in Goa and the only early intervention service for autism. It was Nandita’s vision to start a service for children with autism in Goa. The inspirational and knowledgeable members of ‘Action for autism’ from Delhi provided the initial training and motivation to take that first step in Goa. Nandita had wealth of medical experience as a credible paediatrician and enormous goodwill in the community in Goa. It was with this great positive drive that Diuli was formed in Sangath Child Development Centre in 2002. Nandu established Sethu child development centre in 2005 and her team continues to work with various aspects of disabilities and special needs. Diuli team consisted of two Special Educators and four teaching assistants who worked with children with autism. We had none or very little experience with us to perform this extremely challenging task of teaching children with autism. It was literally on the job training for us. We had to behave as if we had things under control or that we had all the answers. The truth was we had no answer, but together we were there to help and learn, share and care. Jocelyn and I would often find Nandu in her office and share our inadequacies, ask difficult questions to seek guidance and reassurance. I remember her being very attentive and empathetic to our emotions but most of all her ‘what do you think you should do?’ strategy empowered us as teachers.  We knew she would ask us to seek the answers from within us but it helped tremendously to go and share our thoughts, frustrations and many times joys of achieving little things. The teaching assistants Sheela, Thelma, Violet and Shaheena had some important qualities in common– absolute dedication to their work and abundance of energy and love for children they worked with. We had no idea where the children would be 10 to 15 years from then. There were doubts and concerns that although there is service for pre-schoolers with autism, there may not be enough help and support as years go by. 

The collaboration between parents and professionals such as Nandu and Giselle Lobo made sure that children with autism have a strong all round educational at every stage. I think it is a great achievement for a small group of parents and goes to show that dedication and persistent efforts towards the goal can make seemingly impossible aims come to existence. Giselle Lobo pioneered in setting up resource rooms in mainstream schools in Goa and made integrated/inclusive education work!  Every step of the way Elizabeth, Rashmi, Vandana, Roshan and many more hard working parents managed to gather funds, community and political support, professional guidance and resources to make education for children with autism and other special needs as inclusive as possible. And now they are on the way of extending the inclusiveness by giving important skills to young people with autism to enable them to be a part of the community as contributing members. 

Families of people with autism and other disabilities have often had to find their own answers and fight their own battles in India. We as a society have made very little contribution to make our society an inclusive one- where every person has equal opportunities and is treated with dignity and respect. This can be attributed to lack of awareness and resources. I hope success stories such as this will help to increase awareness. As for the resources, the team of parents in Goa have demonstrated that it is possible to raise funds and find resources if there is real determination to make a difference. Let’s join hands with them to make inclusive education and social inclusion a reality for everyone!

Messy play – should I be fussy about it?

Messy play – should I be fussy about it?

It’s been a long time since I started a blog and wrote the first blog-post.  I myself had started believing that second post is never going to happen. A phone conversation with my friend made me think ‘hmmm that’s something to think about and write about’.  Moreover, another clever friend had successfully nudged me about the blog. So, thank you girls for getting me out of my comfortable sofa.  It might have taken almost two years for me to get back to the laptop and start hitting the keyboard but it has finally happened, and I’m hopeful that I shall be able to be more consistent. 

All the parents out there would know that being a mother of a toddler is not an easy job. I have been busy doing exactly that! Today I took my boy to the toddler group and that gave me some food for thought. The toddler group is run by elderly volunteers, is much organised, and I really respect them for the excellent work they are doing for the community.  I am a great enthusiast about sensory development and sensory play. However, I surprised myself today by beginning to question the messy play session that I saw in action at the toddler group. The children were given a tub full of corn flakes for messy play. There were buckets and spades in the tub. The children were having a great time feeling the texture of the crispy flakes, filling and emptying buckets. Some of the flakes also landed on the floor and a helpful volunteer was ready with a brush and pan to clean the mess. The children were getting sensory feedback, eye hand coordination, there was great sharing (or no sharing) happening- everything that a child development check-list would ask for was met by this set up.  However as I thought about it and watched the children play in it, something in me wasn’t happy about it! I think the credit for that discomfort goes to my parents and my Indian up-bringing. As I mentioned earlier I’m very aware of the benefits of messy play but playing with food and wasting food just isn’t acceptable!

 I started thinking about those less fortunate children who don’t get a day’s meal. The image of children from ‘Apana Ghar’ is still fresh in my memory. The children of migrant workers sat beautifully in a circle, waited their turn for a glass of milk and then showed gratitude for the same. And here I was watching my little one play in a pile of corn flakes! The two images were so contradictory. In India we are thought to respect food and never to waste it. My question was what message are we giving to our children? That it’s okay to waste food? Is it Okay to be so arrogant? My toddler is in the stage where he loves making a mess with almost everything and playing with food and water. I get really upset when I see him play with food especially when it lands on the floor. I try to explain that wasting isn’t acceptable and some children do not get food to eat. I also enjoy making play dough, corn flour paste and watch him play with it. I think we should be able to draw a line. I also believe that we should be able to instil the right values to our children.  I think as educators and parents we have to constantly question and reassess our practice. I so agree with the principle of messy play and the volunteers today had the best intentions. I wasn’t able to discuss this with the volunteers today but I would like to discuss and express my point of view next time we visit the group. Perhaps this a practice round....I‘d like to know if my thoughts about today make any sense or is it just me over-reacting?

'पहिलं पान'

पहिला-वाहिला ब्लोग पोस्ट लिहिताना खूप उत्साह वाटतोय. माझ्या घरातून कॉम्पुटर द्वारे मी अख्या जगाशी संवाद साधू शकतेय ह्यातच खूप आनंद आहे. मला ब्लोग वर नियमित पणे लिहायला खूपच आवडेल. तसा मी प्रयत्न पण करेन. पण ५ महिन्याच्या माझ्या गोंडस बाळाला माझा पूर्ण वेळ पाहिजे त्यामुळे हे शक्य होईलच असे नाही. 

  ह्या पहिल्या पोस्टचा विषय कोणता असावा बरं?  खूप विचार केला. डोक्यात हजार विचार आणि कल्पनांची गर्दी जमलीय. त्यामुळे नक्की सुरवात कुठून करावी तेच समजत नाही.  मला ह्या ब्लोग मधून काय साधायचं आहे त्याबद्दलच थोडंसं लिहिते. बरेच लोक मला विचारतात कि मी हे क्षेत्र का निवडलं? हे क्षेत्र म्हणजे विशेष गरजा असलेल्या मुलांना शिकवण्याच . विशेष गरजा असलेली मुलं म्हणजे नक्की कोणती मुलं? असाही प्रश्न बऱ्याचदा पडतो. मी autism असलेल्या मुलांना शिकवते. मग autism म्हणजे नक्की काय? तर हे सगळे विषय मी इथे हाताळणार आहे. ह्याच बरोबर माझ्या स्वतः चा इथवरचा प्रवास, माझे अनुभव मी इथे मांडणार आहे. Autism ला मराठी/हिंदीत 'स्वलीनता' किंवा 'स्वमग्नता' हे शब्द वापरलेले मी ऐकलेत. मी स्वमग्नता हा शब्द इथे वापरेन कारण हा शब्द ऐकता/वाचताच थोडीशी कल्पना येईल. मला इथे बरचसं लिखाण मराठीतून करायचं कारण स्वमाग्नातेवर खूपच कमी माहिती आज मराठीत उपलब्ध आहे. इंग्रजीत ह्या विषयावर प्रचंड माहिती सहजपणे अपलब्ध आहे आणि रोज नव- नवीन माहिती प्रकाशनांत येतच असते. मराठीत आणि इतर भारतीय भाषांमध्ये अगदी जुजबी माहिती असल्यामुळे आणि हा प्रकार थोडासा नवीन असल्यामुळे आपल्याकडे स्वम्ग्नेते बद्दल कमीच जागरूकता आणि झालाच तर गैरसमज खूप आहेत. तसा हा प्रकार समजायलाही खूप क्लिष्ट असल्यामुळे बऱ्याचदा त्याची तुलना न सुटणाऱ्या कोड्याशी (mysterious puzzle) केली जाते. मी काही ह्या विषयावरची तज्ञ नाहीये. माझ्या आजवरच्या अनुभावरून मला जे काही शिकता आलं ते मुलं आणि त्यांचे पालक ह्यांच्या मुळे. मला ह्या क्षेत्रात काही खूपच अनुभवी आणि तज्ञ मंडळींसोबत काम करायची संधी लाभली त्यामुळे मी अजून शिकत गेले. ते सगळे अनुभव मला इथे मांडायला आवडतील. अधून मधून माझ्या खाजगी आयुष्यावर पण सर्वसाधारण सर्वांना जवळचे वाटणारे काही विषयहि मी इथे मांडेन.

चला ठरला तर मग! काहीतरी ध्येय नक्की झालंय. आता पाहू हा प्रवास कसली वळणं घेतो ते. आज इथेच थांबते...पुढला पोस्ट माझ्या ह्या प्रवासाची सुरवात कशी झाली त्याबद्दल असेल. पुन्हा भेटू....लवकरच! 

first post

I am feeling very excited as I type my first ever blog-post. It feels great to have this tool at my finger tips that has this amazing power of meeting the world literally from my laptop. I do hope to update my blog regularly but would like to mention at the outset that might not always be possible as I have 5 month old gorgeous little son who needs my constant attention. 

I have been thinking about the topic for this first ever post. Well, I have millions of thoughts and ideas floating in my head about how my blog will take shape. It’s hard to decide where to start. Let me just start with explaining what I hope to achieve here. I would like to narrate my journey as a special needs teacher. Many people have asked me why I chose this field and I have some strong influences that lead me to this profession. So, naturally that would be the starting point of my journey. Secondly, I don't want this sharing to be completely personal in nature. I would rather have major focus on sharing information on autism and spreading awareness about this condition. To do this I would have to get skilled in writing in my mother tongue Marathi. There is enormous amount of information available on autism in English and there is almost negligible source of information in Indian languages. I am not an expert on the topic of autism however would like to share what I know and I’m very sure that I will meet people here who know something I don’t.

So I have a plan then! I do hope people will enjoy reading my blog. I hope to create a balance of sharing personal and professional information. I would love to receive feedback about the content and constructive criticism. I want to say one thing about my writing skill (something I discovered while doing masters) that I am too precise and have great difficulty expanding on an idea. If my friends, who know this weakness in me, are reading this post they will be laughing their heads off remembering the times I have complained ‘My essay is ready BUT I’m 100 words short of the 3000 words limit’. I am glad there is no one ‘evaluating’ my posts and there are no limits and conditions.

On that note I’m signing off for today. Hope to be here soon!