I take great pleasure in presenting to you the first issue of the ‘The Autism Newsletter’. We hope that this newsletter will give all our well-wishers including the parents of CADRRE children an opportunity to know more about CADRRE and the work we do. CADRRE has been set up with the vision of transforming lives of children with autism through incorporating best practices from around the world along with familycentred holistic care. A not-for-profit organization, CADRRE is supported by the philanthropy of our well-wishers:
Donor Patrons
– UST Global and Chandaria Foundation
– SunTec Business Solutions and K. Nandakumar
Donors– Trivandrum International School and the George M. Thomas Foundation
While the idea to start a world-class institution exclusively for autism and related disorders had been on our mind for the last few years, CADRRE finally opened its doors this September with a small team of six.
Malini Unnithan (Centre-Coordinator), Annie Charles (Occupational therapist), Swathy A. (Speech Language Pathologist) and Neethi S. Raj (Psychologist) visited the United States to attend a special training programme organized for them at SARRC in Phoenix, Arizona. They also visited institutions in New York to observe and absorb best practices that they can implement at CADRRE.
An airy and cheerful space, located on the PMG-Plamoodu road in the heart of Thiruvananthapuram, the capital of Kerala in South India, the school resonates with the warbling of birds and the chatter of children. An aviary, play area with a sandpit, beautifully manicured gardens, a splash pool, a sensory room, an Ayurveda centre and a sensory path designed with textured surfaces are in progress.
Children will be encouraged to explore art, music, gardening and other activities that focus on their aural, visual, tactile and other cognitive skills under the watchful eyes of our skilled team.
Our dedicated team has seen the school gradually take shape, infuse it with warmth, paint it with a bright and happy palette and given it life. The team believes CADRRE will continue to imbibe, evolve and adapt to the needs of the children.
– G. Vijaya Raghavan, Hon. Director, CADRRE
Our staff at SARRC (from right to left): Neethi S. Raj, Annie Charles, Alexis Boglio
(Clinical Manager at SARRC), Malini Unnithan and Swathy A.
Learning from the best…
CADRRE, Kerala’s first holistic school for individuals on the Autistic Spectrum Disorder (ASD), opened in September this year. The CADRRE team has been striving hard to select and collate best practices followed from all over the world to adapt and internalise them into our format. With the vision of evolving into India’s best school and research centre for autism, the team had visited similar schools in the US – SARRC (South West Autism Research and Resource Centre) at Phoenix in Arizona, Rebecca School, AHRC and The Gersh Academy in New York. They also visited Bubbles Centre for Autism, Stepping Stones, The ComDEALL Trust and ASHA School (Academy for Severe Handicaps and Autism) in Bangalore.
The team had the great opportunity to interact with experts in the field and individuals on the autism spectrum and imbibe best practices from them to implement at CADRRE.While the schools follow different assessment techniques and approaches to cater to the needs of the students, what was common is that apart from finding solutions to problems that people on the autism spectrum face, the centres also aim at creating awareness and underlining the importance of sensitising the society to people with autism and their needs. They hope to arrive at solutions based on two categories they classify society into: the section that has direct association with the person with ASD (immediate family comprising parents, siblings, grandparents and cousins.) and the section who are indirectly related and at large oblivious and unaware of the problems and needs of autistic people.
This attention to detail helps children meet group and individual goals set for them as per their assessment. Children are aided by speech, occupational, art and music therapists to help them achieve their targets and help the therapists to draw out an individual plan to prepare students for the transition learning programme targeted at individuals above the age of 16.
Well – defined and balanced schedules, inclusive of academic and therapeutic goals, are designed to equip students with necessary skills to enter the transitional programme. Besides nurturing developmental, social and academic growth, transitional programmes also aim at empowering the child to lead an independent life. This is ensured by taking them for periodical community visits, inculcating vocational skills and finally helping them find employment.
Our team was able to gain many useful work practices implemented at the schools such as:
- Daily health check-ups
- A good rapport between the therapists and parents of the child through a handbook and scheduled meetings to track his/her progress
- Having sensory areas that help the child focus better during activities;
- Continuous camera surveillance during class hours to video graph the proceedings of the day for later reference
- Minimal technological interference to improve interpersonal and communication skills
- Workshops and sessions for the family and relatives to equip them with skills required to meet the child’s requirements at an emotional, intellectual and physical level
- Visual time – tables
For instance, students at the Rebecca school in the age group of 15 to 21 work at Café Rebecca (a non-profit project of the Rebecca school), engaging in all the aspects of the café, right from baking to delivery and advertising. At AHRC, students are taught skills like copying, lamination, maintenance works, crafts and so on. They also undergo technology based training, learning to promote their rights, retail industry training and most importantly live in a rented apartment to be able to understand living in a community and coping independently.
Having collated and put together some of the best practices followed by experts, our team is confident that our students will definitely reap benefits of the programme at CADRRE and come out more confident and capable than when they joined us.
India Inclusion Summit
Deepa Narasimhan interviewing Prashant and his sister at the sixth edition of the India Inclusion Summit at Bangalore
The sixth edition of the India Inclusion Summit (IIS) was held at Bangalore this year on November 11 and 12. Founded by V. R. Ferose (Managing Director, SAP Labs India) in 2012, the summit has gained momentum since its inception comprising just a few people. The summit hopes to achieve its target of an inclusive India by 2030. As always, the summit saw the participation of people from around the globe to discuss, highlight and find solutions to the problems that people with disabilities face in our society. The need of an inclusive society accessible by all and a sensitive system to support and advocatethe needs of the disabled was also touched upon. Eminent motivational speakers from the disabled community, who have challenged their limits and carved a niche for themselves in the society like Ummul Khair (civil servant), Shalini Saraswathi (blade runner), Deepa Narasimhan (employee with DELL), Sai Kaustuv (graphic designer and self-taught musician) and Prashanth (copy-writer at MindTree) were few of the people who shared with the listeners the trials and tribulations they overcame and the principles of design to build a disable-friendly nation. The summit also saw able leaders which included Senator Tom Harkins (instrumental in passing the Americans with Disability Act and a zealous advocate of the rights of the disabled community), Kris Gopalakrishnan (Co-founder of Infosys), Dr. (Major) Anuradha (Trustee of Asthagram) and Pankajam Sridevi (Managing Director at ANZ Bangalore Hub) who hope to pool in resources and help in this venture. Carnatic vocalist T.M. Krishna and two-time National Award winning Director Nagesh Kukunoor also graced the occasion.
ADOS 2 – the latest tool in assessing autism
Swathy A, a Speech Language Pathologist with CADRRE recently attended a workshop on ADOS (Autism Diagnostic Observation Schedule) hosted by the department of neurodevelopmental sciences at NISH on November 9.
What is ADOS?
ADOS is a highly regarded, standardized tool for assessing behaviour in a person on the autism spectrum and ADOS-2 is its latest version which can discern autism in a child as young as 12 months. Aberrations in social interaction, communication and play or the imaginative use of objects around and other behavioural issues considered unusual can easily be mapped in individuals with the help of ADOS. ADOS 2, an advanced version comprises activities to elicit behaviours directly linked to the diagnosis of ASD. Observing and decoding behavioural patterns aid in diagnosis and drawing up an intervention plan for the individual with autism.
Swathy also had the opportunity to meet professionals from the rehabilitation team working with children on the spectrum and other neurodevelopmental disorders.
Tete-a-tete with Dr. Jamila K. Warrier
Recently Neethi S Raj, a psychologist at CADRRE, had the opportunity to meet and interact with Dr. Jamila K. Warrier, Consultant and Clinical psychologist at KIMS hospital. They discussed various psychological aspects pertaining to autism that could be implemented at CADRRE.
Dr. Jamila underlined the importance of parents being a part of their child’s learning process and follow-up of the child’s academics at school and home. Briefing the child on his/her day about the activities lined up for him / her would aid the child in recollecting and looking forward to his / her day. Inclusion of cognitive activities (inculcating table etiquette and toilet manners with proper instructions) pertaining to their routine will also help in the long run.
Dr. Jamila also suggested providing sensory items like a kaleidoscope or some glittery object or a simple remedy of using a bottle filled with oil and water mixture and dropping confetti or glitter into it or similar other sensory objects to get the attention of children who constantly get distracted and cranky.
Understanding the quality of life of families with autistic children, with the FQOL scale
A seminar on developmental disorders presented by Dr. Preethy S. Samuel, Assistant Professor with the Occupational Therapy Department at EACPHS (Eugene Applebaum College of Pharmacy and Health Sciences) in Detroit, was held at NISH on November 20 which was attended by Annie Charles, our Occupational therapist. Dr. Preethy touched upon her area of research which entails the quality of life of a family that has a child with disability. She elaborated on her research which illustrates how families with a child with disabilities rarely spent time together and how that deficit in ‘time spent together’ has an impact on the overall wellbeing of the family. She said the family should not just spend time together but also engage in leisure activities together, whether it is attending a function or going on a vacation. FQOL (Family Quality of Life), a scale comprising factors is used as a determinant to check whether a family with a differently abled child, is leading an optimal and happy life.
Dr. Preethi also elaborated on the various sensory systems and related issues and different sensory activities for children to overcome their difficulties.
Tips for parents
Communication
Communication is essential for every individual. All of us learn to communicate through gesturing, eye contact and vocalizing before learning to pick up a language. Whatever the method be, the intent is to convey our needs and wants. Communication is most often a challenge for children with ASD. Anticipating the needs of a child with ASD without giving him/her a chance to communicate will only result in hampering the want to communicate. Parents of autistic children should work on their child’s communication skills by providing them with opportunities to initiate conversation by encouraging them with their favourite toy, food, game or activity.
says Speech language pathologists, Swathy A. and Haritha S. Mohan
Sensory Diet
A sensory diet is nothing but a carefully designed programme of sensory inputs (visual, tactile, auditory, proprioceptive, vestibular) that needs to be planned for an entire day, and incorporated into activities at home and school. This structured routine provides the child with the sensory fuel that his/her body needs to fall into, and follow an organized pattern on a daily basis. By ensuring sensory nourishment to the brain and better self-regulation, a sensory diet can do wonders for the child. Drawn out as per the demands of each child, these activities are individualized and modified frequently to meet the child’s requirements.
For instance, incorporate activities that stimulate your child’s senses like massaging their feet or back, using a vibratory tooth-brush or hair brush, serving them crunchy or chewy food, getting them to jump on a mini trampoline, involving them in simple household chores by giving them repeated instructions and spending quality time with them by engaging them in some clay modelling or finger painting and similar activities.
says Occupational therapist, Annie Charles
Unsung Champions
Naoki Higashida is an author, poet and essayist. Born in 1992, Naoki has two bestsellers to his name. His book throws light on the most commonly asked questions about autism. Perhaps what urges people to pick up and read this book is the fact that Naoki himself is autistic and his book is first-hand information about his experiences growing up without being able to communicate what was in his mind. With an alphabet grid and transcriber, Naoki brought out his book urging parents and care givers not to give up on individuals with autism and their abilities. His book has been translated into 30 languages and when he was just 13, he was recognized as the second best-selling author after renowned Japanese author, Haruki Murakami.
Kudos to this young author!
Thought for the month
There needs to be a lot more emphasis on what a child can do instead of what he cannot do. – Temple Grandin, animal scientist who was diagnosed with autism at the age of 40