Developmental Challenges

On World Human Rights Day and the day after World Patient Safety Day, TogetherWeCan and PatientsEngage would like to bring the focus on safety of children at therapy centres. Despite an ongoing petition in Kerala since 2015, progress has been slow. Why is a child's right to safety not a priority? In light of a couple of recent incidents, we bring you an update on the petition on therapy centre regulation by Seema Lal.  In October 2018 the following incident happened in a government therapy…

Outdoor play is important for all persons including children with disabilities. In our Live Discussion sessions we talk to a play therapist, an Ashoka fellow and parents of teenagers on the autism spectrum. In continuation of our series on Living Better With Disabilities we have with us Meet our Panelists:  Kavitha Krishnamoorthy: Parent of teenager on spectrum, Founder Kilikili and Ashoka Fellow Lucy Bowen: Play Therapist, National Association for Play Therapy   Priya Kannan:…

Ritika Sahni, a singer-activist, special educator and Founder of NGO Trinayani, an advocacy driven organization, emphasises that it is important to change attitudes and mindset of the non-disabled population if we want to make the world more inclusive for persons with disabilities. Could you tell us a little about Trinayani and how was it conceptualized? Trinayani is an NGO founded in 2006. It has been working towards creating awareness about disability and diversity issues and empowering…

By making a few modifications and changes in the house, a wheelchair user can be as independent as possible. Here are a few suggestions. How to make your house wheelchair user friendly Use wooden planks (in picture above) as portable ramps. Remember the ramp should have 1" rise for every 12" length (1 to 12 ratio). Put handrails on both sides of stairs. To take a wheelchair through a doorway, it should have at least 32" clear opening. Reorganise the furniture to give more space for wheelchair…

Dhruv Balachander, who was diagnosed with Fragile-X syndrome and autism at a young age, is a skilful and prolific self taught artist who has created over 100 artworks that have been framed, sold, gifted or displayed. His mother, Vimal, writes about the exceptional vibrancy and energy in his paintings. ‘Not in matter, but in thought, not in possessions but in ideas, are to be found the seeds of immortality’ - Sir JC Bose, scientist. Dhruv, is an idea, the idea that a child must be listened to.…

When antiepileptic drugs fail to control seizures and convulsions, an epilepsy surgery may be recommended. Dr. Rajan Shah, Neurologist, Nanavati Super Speciality Hospital assures that with advances in technology and dedicated centres, epilepsy surgeries have become safer and can be considered a treatment option.  What are the common causes of epilepsy? Common causes of epilepsy in children and adults are different. They are briefly enumerated as – Head trauma – SDH, EDH, contusions.…

Personal safety and sexuality education is critical for children and young individuals with Intellectual disabilities, auditory or visual impairments. But it often does not get the right level of attention from parents and teachers. Enfold Proactive Health Trust, a Bangalore based NGO, has devised a project ‘Suvidha’ to address this gap. Read on. All children, irrespective of the ‘normalcy’ of their neural or physical development, have a right to safety and dignity. Personal safety education…

Ten year old Advaith who is on the autism spectrum and was diagnosed with ADHD has become an adept jewellery maker that keeps him preoccupied and independent. His mother Smrithy, who worked relentlessly on teaching him through structured method, now shares her work and videos with many. As an infant, my younger son Advaith (Addu) was diagnosed with autism and attention deficit hyperactivity disorder (ADHD). We enrolled him for ABA (applied behaviour analysis), a type of intensive therapy that…

Karan Shahh, 20 shares his journey with SMA III, the support of his family and a well trained dog, Angel. Socially and digitally savvy, he refuses to be pitied and told how to live his life. His mother Pratima shares advice for other parents and in similar position and how her advice to her sons always was - "you can never walk, but let’s build on what you can do.” 1.   Please tell us a bit about your condition  I have type III Spinal Muscular Atrophy or SMA. SMA is a genetic…

Sunder and Sriram are twins who were diagnosed with cerebral palsy when they were just 6 months old and who now run Twin Twigs, an eco-friendly business initiative. Ramesh and Radha are their enterprising and supportive parents. The twins and their parents talk to PatientsEngage about this exciting endeavor with the dual goal of creating employment for disabled persons like themselves and making our world plastic-free via a sustainable green model. Sriram and Sunder respond to questions by…