My name is Anandita. I am 16 years old, I am in the 10th standard at Vidya Jyoti School in Pune. I am a drummer, I love Bollywood music and dance.
I was not born with Cerebral Palsy (CP), I acquired it after I was born because I had a congenital heart defect and I was on life support for many months.
I began therapy when I was five months old. My parents talk about my strong will. I did not give up. That is something I have continued with over the years, pushing myself and achieving goals when not everyone believed that I could. In fact, my therapist gifted me a red T- shirt that reads, “Can Do” and that’s how I manage myself - always believing that I Can Do.
This belief that I Can Do has been very useful especially at school. I began school at five by attending the Early Intervention Center (EIC) at Ummeed. I was not walking then or speaking clearly. After this my parents homeschooled me.
When we moved to Pune, I joined a mainstream school. In the early years - from kindergarten up to the 4th standard - I managed. The school was supportive. I made friends. But as I moved up grades, the pressure of studies and the syllabus was too much. I found it difficult to cope and was very anxious. I moved to the resource room and studied at my own pace. This was better but I was still struggling to fit in academically.
In the 7th standard, I moved to Vidya Jyoti, a special school. My mother felt open schooling would be less stressful for me. Here, there are other children like me with learning challenges. I see myself as a normal child studying with other children who have difficulties like mine or more severe than mine. It has been important for me to fit in. I didn’t want to be different or made to feel I was different.
I started doing very well - both in my studies and with my confidence. I was surprised when I was elected head girl of my school this year. I also played a leading role in our school play as the Narrator for our Annual Day.
My Can Do spirit helps in other ways as well. A few years ago, I played at my first drum concert and my teacher told me I had an emotional connect with music. Recently I stayed all alone with my 90-year-old Nana when my parents had to travel and I had to manage my home and I did! It made me feel independent.
For me when I say I cannot do something and I am told I can do it then I feel that I am NOT understood. Because if I could do it, I would have. Sometimes when I would watch children play football, I too wanted to join in but they would say that I wouldn’t be able to play. I felt that I could have always tried and that I should be the one to decide.
People want to put all children with CP in one box. Each child with CP is different. My anxiety over my condition is something that others cannot understand. I like to have things in order and under control. This is how it is for me, it may not be for someone else with CP.
I love details and organizing events makes me happy. I do not know what I want to do eventually but I do know I love being around food and being with people!
Putting the families’ needs first, considering them as equal partners in decision making about their child, in other words being family centered, though universally considered a best practice, is still an exception rather than the norm. Ummeed considers Family Centered Care as its core philosophy for providing services and has taken several steps to ensure that it walks the talk. Asking families what they like about our services but more importantly what should change has been the most important one. A six-month study was conducted in which more than 150 families offered feedback on Ummeed’s services.
Families appreciated the support and respect that Ummeed’s professionals extended through their work. They asked for opportunities to connect with other families to share information and wanted quicker access to services. Ummeed is remodeling its services based on this feedback.
A monthly walk-in support group for parents - a first-of-its-kind initiative in Mumbai, has been started based on feedback from the families. Sixty parents from all over the city participated in an engaging discussion on planning for their child’s future. This discussion was co-facilitated by Ummeed and parents from a not-for-profit organization called Adult Support Kendra.
Involving parents in designing services will not be a one-off exercise at Ummeed. A Family Advisory Council will soon be setup to get regular inputs on Ummeed’s clinical and training services
If you wish to join our family group meetings and receive updates contact email@example.com
The aptly-called 'Fun Club' hosted by the Mental Health Team at Ummeed is a space where children gather to have fun whilst working together in groups. Held on a monthly basis and with additional Summer and Winter Clubs, the hope is that children make connections that could continue over time by writing letters and by meeting each other outside of Ummeed. The children work in teams while developing skills like coordination, listening, communication, cooperation, decision-making and execution. The skills that each child brings to the group has an automatic audience in the form of the other participants, making them more visible and available. All of this is done while creating art, baking and playing games amidst laughter, creativity, fun and spontaneity.
To visit our clinic contact firstname.lastname@example.org
The 55 Km Walk for Ummeed 2018
Each year a group of people from diverse locations, professions, ages and interests converge on a weekend in January in Goa to support Ummeed’s work with children and families.
The 55 Km Walk for Ummeed in Goa, started in 2012 with just three walking enthusiasts, has grown over the years and attracts between 80-100 participants. The 2018 walk took place on January 13, with a new energy, with four young walkers under the age of 10, all actively walking and fundraising for Ummeed!
The young ones walked upto 20 kms, inspiring each other and the others to keep walking! Each and every walker had a unique experience and shared feedback on the seamless organization of the event by the Ummeed team.