Today, I am honoured to introduce you to an Empowered Autism parent, who helps many kids on the autism spectrum realize their full potential through the Amaze Charitable Trust and also guides other autism parents to be better advocates for their children. She is truly an inspiration! This interview will be published in two parts.
- Q) Hello Akila, would you like to tell about your inspiration behind starting Amaze trust and a few details about the trust.
My inspiration has always been my son Nishant .Right from the early days he has been an enigma...he had so many capabilities ,keen observation to detail as well as awareness of the big picture ,extremely intelligent, aware, intuitive and sensitive, courageous and exudes a positive attitude …at the same time he also has severe challenges. Mainly he could not plan his movements, he has difficulty with motor planning, which meant he could not speak or write .He also has difficulty at times with regulating his mood.
In the early days I took it as a challenge to “solve” this enigma. I trained myself in many methods, read over a hundred books about Autism. Researched on the internet and worked hard with my son. He now communicates with an iPad , is an avid trekker and cyclist and is undergoing skills training in the areas of computers , cooking and fitness .He always liked music and listens to a variety of genres and his newly discovered interest is drawing with MSPaint and also sometimes likes to shake a leg with friends .
Along the way I started sharing the techniques I had learnt with other parents and families , I would help assess their children for their learning styles and areas of strength and gaps in skills and guide them to the appropriate interventions for their wards and also counsel them through hard times .
I would also conduct training for teachers and other professionals and guided some of them closely to work with children/persons with Autism. Sometimes, some of the children improved beyond even our expectations, however for some we had to find workarounds...alternate ways to help with their communication and behavior using AAC and Assistive technology .
AMAZE was founded in September 2012 by my husband and I when we realized that there was a scarcity of services for older children and persons on the spectrum also there was a need for an Autism focused organization in Coimbatore .
We are focused on providing services that are new or not available such as Technology based intervention , Employability training , Sports and Fitness training and Social skills training. We also conduct training programs for parents and teachers and offer free parent counseling. With each child we take a lifespan approach working on skills that help the child to Engage with his environment, Learn skills and become functional and productive.
We have no enrollment criteria for any of the programs. We also look at families of our students as partners in this process and strive to empower them too. We are an open-door center and we have had a number of people from other organizations in the region visit us and learn from us .
We integrate evidence based techniques for Autism such as TEACCH, PECS, VBA as well as innovative techniques such as RPM, DRAMA, and ART based techniques into our programs
Positive belief, Scaffolding the learning process, Adapting lessons to learning styles and interests of the student, Process based learning with a focus on skills, Positive behavioral supports including sensory breaks , visual schedules and instructions are few of the core values and techniques that help our students learn better and at a faster pace .
- Q) Technology plays an important role in your programs Akila, tell us more about that.
Technology has been something that has fascinated me from when I was a young child and my career in the software industry was a result of this passion. Technology has also been a savior for my son and helped him communicate his thoughts and feelings with us in spite of not being able to speak or write!!
I have used several technology tools for him right from the early days to help with his attention, literacy and leisure skills. I was using a touch screen laptop for him since 2007-08 and a software called Clicker 5 which helped accelerate his ability to respond thorough typing .He also used VOCA [Voice output Communication Aid] like Techspeak /Go talk for communication. This was much before the iPad days; the Ipad makes it all much easier in terms of access.
Project Prayas – Daksh, conducted by Autism Society of India [ASI], Bangalore initiated in 2011 and proved conclusively that technology based intervention was very useful for children on the spectrum. I am involved with the project in an Advisory capacity and also am one of the founding members of the ASI .We were looking to replicate the project throughout the country and I volunteered to do the first outstation replication of Daksh in Coimbatore to make a beginning.
- Q) Tell us about your program Daksh and how it’s helping our kids on the autism spectrum?
Daksh – Coimbatore offers technology based intervention for children in the age group of 5-15 years .DAKSH means skill and we use technology to work on the 4 ”C”;s – Cognition , communication , Creativity and Computer skills . It is a process based approach .It is an add –on program – after school – where the child comes in for 45 minutes daily. The child is assessed when he is taken in, attention and motor skills are also included in the assessment and worked on or adaptations are provided if required . An individual learning plan is devised and worked upon. Parent participation is encouraged and the skills are transferred to the parent also. We also offer Daksh as a part of our summer programs for those who cannot take it up during the school year.
We have created hundreds of worksheets for Daksh which are based on ABBLS –R Checklist, Regular school Curriculum and Functional Literacy curriculum. These worksheets are then customized according to the students learning needs.
We also use software tools such as Clicker 6, Earobics and sometimes Educational CD’s and DVD are used to reinforce the learning as well as Ipad /Windows based apps. We have a touch screen monitor, adapted mouse and colour coded keyboards which help further with access and accelerate learning.
The third batch of Daksh is ongoing .We have trained about 25 students, about 12 students are doing very well in mainstream environments after this program. They have improved remarkably in the areas of communication, cognition and couple of them are into creativity. Some students with severe motor and learning challenges have progressed well with the use of technology and adaptations.
- Q) That’s a great program! Tell us about the Daksh@home program.
This year [2015-16] we have introduced a 6 month Daksh@Home program where we are helping outstation parents learn to use these techniques with their children and become empowered to teach them at home using technology .
Parents come in with their children twice a month on 2nd and 4th Saturdays for half-a- day . The parent is taught hands-on how to work with their child using technology. They are taught to use the technology tools as well as strategies to customize the program according to their child’s learning needs.
- Q) Tell us about your program Ameya.
AMEYA - Amaze program for Mentoring and Empowerment of Young Adults …AMEYA is also one of the names of lord Ganesha meaning Boundless Potential.
The objective of AMEYA is to tap into the boundless potential of Young adults on the spectrum and teach them skills that take them to the next level of independence whether it is in basic living skills or employment.
This is whole day program [10am – 5pm] program for students with Autism who are above 16 years of age. We take a holistic process based approach where we train them in Technology based skills, functional Literacy, Communication, Creativity, Cooking, Independent Living skills, Sports and Fitness and Group and Social skills. Students are given 1-1 instruction for 3 sessions to learn new skills and other sessions are in a group with ratios like 3 teachers to 6-7 students.
Our long term goal is to create a successful replicable training model which takes a Lifespan approach for students with Autism which can train them irrespective of where they fall in the Autism spectrum. We assess the students in depth when they join and expose them to various activities in order to discover their abilities and interests and then devise an Individual Learning Plan [ILP] for them to take them to the next level from wherever they are .We are documenting our work extensively so that we can help replicate the model in other centers.
In the past year and a half student of AMEYA have overcome severe behavioral challenges, developed important skills such as communication, reading, writing, typing. computer based software tools like MS Word, MSPowerpoint and MSPaint, learnt formatting, printing, cutting and lamination to prepare educational material such as flash cards and schedule cards, discovered interests like cooking, music, art and so on .They have become an integrated group, they take care of each other, help each other and surprise ..Surprise …show empathy [a skill which persons with Autism are supposed to lack]
We started with a pilot of 3 students. One of these students is currently working with SAP Labs at Bangalore. Currently we have 5 students in Batch 1 who are already processing orders for educational material and improving with their advanced life skills like shopping gardening, meal planning and cooking. Batch 2 has 4 more students who are also settled in and responding well.
Long terms goals is to have sheltered and self employment options for these students and to place those with higher level skills in open employment. Independent and Assisted Living options are also being planned for.
- Q) Programs like Ameya are the need of the hour! I would love to know more about the learning materials prepared in this program and other achievements.
There are two categories of learning materials being prepared.
Firstly there is the laminated material which is available as standard products for young students with Autism as well as customized options. Some of the products that have been in high demand are the Standard and customized communication files. These are used as PECS based communication aids for young children and students who have little or no speech and more severe challenges. The schedule boards , time cards, schedule cards and calender cards are also in demand , they help students follow a visual schedule based on time and date and learn time and calendar skills .
Vocabulary cards are also available for a large range of vocabulary. Ameya students prepared the entire set for their literacy program themselves...this is an example of process based teaching .Besides our standard picture sets , we are also open to taking the pictures given by the parents/teachers and making customized cards to meet the specific need of the child .Size variations are also possible.
We are also processing the entire flashcard set for a leading preschool chain in Coimbatore based on their needs and requirements. Secondly we have designed an innovative functional literacy curriculum and life skills curriculum for which learning and review material and assessment tools and which will soon be available as a product along with capacity building programs to help replicate the AMEYA program at other centers.
We are also in the process of developing apps to help with the learning process and improve productivity of our students and help them Navigate the real world.
- Q) Tell us about your program Achint.
ACHINT means carefree and the goal of the Achint program is to develop this attitude in our children with ASD [Age 5-15] .The seeds for this program were sowed way back in 2003 when I started a small inclusive social skills group for Nishant and a few friends to help him develop group skills that were essential to survive in a mainstream environment . We used Art, Group games, Music and dance to bring this about.
The Drama for Autism course was an inspiration for me to revive these activities with young children on the spectrum and I started by including the social skills program as a weekend program for a group of young children. We used Drama techniques, group games, Movement, Art and Music based techniques and saw really “dramatic” improvement in all the participants over a 3-6 month period.
They improved in the areas of imitation, initiation, joint attention, turn taking and understanding group instructions and rules of a game. This helped them improve overall in their communication, speech [volume, length of utterance], group and social skills .Sensory sensitivities were also reduced.
This encouraged me to make this a regular bi-weekly hour long program …the Achint social skills group.
Nishant was also always exposed to sports and fitness activities that included trekking in Nature, Cycling, Swimming, Skating, Football coaching [though he could never get the rules of the game] and was also in a gym based fitness program .This was something he enjoyed and it also helped to keep his restlessness down, sleep better and kept him attentive in class.
Hence we decided to offer 1-1 sports , fitness and play skills training through Achint program on a daily basis . A number of young students have learnt to skate , cycle, ball skills , develop a exercise and fitness routine whether indoors or outdoors , learn physical games like running and catching, hide and seek and so on .They have improved in the areas of attention, agility, flexibility, strength and endurance, motor planning and coordination and so on, and many have gone on to learning cycling , skating and participate in sports in their mainstream schools.
This chat to be continued in the second part of this interview...