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Aug 13, 2018

My Son, Sanjay*

Learning Through Touch
Learning Through Touch

‘I now dream of a normal life for my son.’

Those are the words of Sanjay’s mother, after observing her son’s progress with us. Six-year-old Sanjay Nagtialk* lives with his parents in Janata Wasah near Pune city. We screened Sanjay with help of the Anganwadi worker in his neighbourhood. “We discovered his disabilities when he was 3 months, but we did not know how or where we could get our son help. The private hospitals are very expensive,” says his mother. Her husband works at construction sites.

When he joined our centre, Sanjay had difficulty communicating. He was also hyperactive and could not sit still or concentrate on any one thing for more than a few seconds. We started working with him to develop his motor, sensory and communication skills. We integrated behavioural therapy into his Individual Education Plan. Meanwhile, we counselled his parents to help them understand what their child was going through and how they could help him at home.

Within the next four months, Sanjay showed marked improvement. He is able to focus on activities for longer periods. He has become calmer. He likes sand play, palm printing and playing with grains and pulses (for different textures). Currently, we are helping Sanjay perform his daily living activities independently.

*Name changed to ensure privacy & safety.

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May 29, 2018

Sakhshi's* journey of discoveries

Anakha Learning to Count
Anakha Learning to Count

Eight-year-old Sakshi's  lives in Amanakara village in Kottayam, with her parents, two siblings and her grandparents. Her father is a daily wage worker and her mother a homemaker. Her family lovingly calls her ‘Kuttoos’. Sakshi is our firstborn and her birth was a dream come true!” says her mother, Sita.

But three days after her birth, her parents watched helplessly as Sakshi experienced her first fit of epilepsy. “When we consulted a paediatrician, he said Sakshi had been born with congenital rubella syndrome. He explained she had impaired hearing and vision (she had cataract in her eyes), heart problem and cerebral palsy,” says Sita. With income barely enough to feed the family, Sita and her husband were unable to afford regular treatment for Sakshi. The epileptic fits got more frequent.

When she was five, Sakshi began her journey of discovery with us. By the time, our field worker from Kottayam Social Service Society (KSSS) met Sakshi’s family, she had delayed development with poor motor coordination and mobility, zero communication, poor vision and hearing. 

Our team assessed her for clinical and functional abilities and based upon the recommendations of experts and in consultation with her parents, we developed an individualised education programme (IEP) for Sakshi. She started training in motor, mobility and orientation, communication, education and sensory skills and in activities of daily living (ADL). She also underwent surgery to remove her cataracts.

Over the last three years, Sakshi has made tremendous progress. Today, she can stand with support and has improved her eye-hand coordination. She is able to hold biscuits in her hand and drink a glass of milk independently! She has greatly improved her expressive and receptive communication. She is also oriented with her home and her surroundings. Anakha now recognises her parents and her siblings and she responds to her name. Regular medical care and nutrition has improved Sakshi’s health and the epileptic fits have reduced.

Sita is overjoyed at the progress of her daughter. “My daughter couldn’t even recognise my voice earlier. But now, Sakshi has inspired a new confidence in me and she has given me the strength to be there for her and her sisters. I am so proud of her!” she says. The knowledge from Sakshi’s trainer, Simi, and her experience of caring for her daughter at home has made Sita a good trainer – she often helps other children at the centre now!

 

* Name changed to ensure privacy & safety.

Feb 16, 2018

Unstoppable Badal

Badal
Badal

When we face tragedies in life we have two options, either we lose all our hopes or we hold on to our hope. Thankfully for us, Badal’s parents held on the thin thread of hope after they discovered that their son was born with low vision and severe hearing loss.

Thirteen year old, Badal resides at Balianta village of Khairda District in Odisha with his parents, elder brother and a younger sister. A year ago, he joined our home-based programme in September 2016 after being identified through a community survey conducted by Sense India along with our Partner NGO, Aaina in Bhubaneshwar.

As soon as Badal joined our programme, he underwent clinical and functional assessment.  This helped us understand the degree of his disability and based upon the recommendations of experts and in consultation with his parents, we developed an Individualised Education Plan (IEP) for Badal, which determined the focus areas for his learning and therapy.

Badal came in with a lot of behavioural issues including attention deficiency and hyperactivity. He was completely dependent on his mother for all his daily living activities like bathing, brushing, eating and toileting among others. It was becoming very difficult for his parents as both of them were working as daily labourers.

We initially started working on his communication and then we slowly started focusing on his daily living skills. Today, after a year’s work, Badal is exceeding everyone’s expectations. He is unstoppable. He is now going to school and is learning basic sign language. With the constant support of his educator and mother he is becoming independent in his daily living activities.

Badal’s mother Chand is overjoyed at the progress of her son. “After the training, I am getting more and more confident that he can do all the activities like any other children,” she says.

Right now with the support of Badal’s family, his educator is working on improving his mobility and daily living activities. His family has been amazing, always supportive and trying their best to give Badal the best they can and considering their economic condition, we are planning to provide Badal with the regular nutritional support required to maintain his health and to reduce the financial onus of his family.

 
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