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Submitted by PatientsEngage on 12 October 2015

What do you do and where do you start when you get a diagnosis for autism? Hear it from Juhi Ramani, co-founder of I Support Foundation, which offers education for special needs children and the underprivileged. 

“I remember all the hard days spent in that small town with people having no knowledge about autism and about what Shivam was going through.”

Their brother Shivam’s autism, and the family’s struggle to find the right support for him, inspired Juhi Ramani and her sister Bobby to establish I Support Foundation. Based in Lucknow, they also hold workshops in Bangalore. 

Here, Juhi talks of the challenges such families face and what you can do to help your special needs child flower.

What are the main challenges for families with autistic kids? 

  • Societal acceptance - an inclusive society; there’s not much awareness about autism in India. Mental retardation is considered as autism or vice versa.
  • Most of schools are focused on quantity not quality. Sufficient staff should be there to handle the kids, else fewer kids should be enrolled.
  • Autistic kids are not able to take denial or no for an answer, dislike shift/change in routine and have picky food habits, so daily life becomes a challenge.
  • Parents constantly having to entertain autistic kids as they lack the skills to meaningfully engage themselves.
  • The kids vent their frustration when the parents don’t understand, despite their effort to communicate.
  • Each child is different, so handling each one is different. Even the same child in a similar situation - what worked earlier may not work another time.
  • Some kids have a habit of crying without any apparent reason. It can last for hours. 
  • For many children on the spectrum, anxiety is a daily experience. Anxiety is one of the most common conditions with autism/Asperger’s. The nervous system is so fragile that simple day-to-day processing and regulating our world is very taxing for those on the spectrum. What comes naturally for us is hard work for them. Much chaos and confusion naturally results in anxiety. This anxiety is often expressed in obsessive-compulsive behaviour, oppositional defiance, rigid/inflexible thinking, perseverance, rigid reliance on rituals/routines, compulsive need for sameness, mood swings, as well as a variety of other challenging behaviours.

What can or do special needs schools offer? 

  • Many of the schools don’t accept children above 18 years with ASD.
  • They offer general training for autistic kids. 
  • In therapy centres, only para professionals take classes. Qualified professionals only supervise or even that doesn’t happen.
  • The child should get all the necessary therapies at one place. Now the parents shuttle from one place to another; most of the child's valuable time is spent travelling.
  • Good holistic centres should exist for autistic kids/ special needs children where academics are also focused on.
  • Good centres for older kids where vocational training can be given.
  • More of genuine inclusion in schools with intent to socially include, not just focus on getting the child to do some academic work.
  • Getting good academic support in an inclusive set-up and access to sports, where the child gets to play with other children.
  • Most school-based special educators are judgmental whereas good guidance is needed.
  • Need the right teaching methods and patience.
  • Work on developing social skills.

How easy or difficult is it to find a special needs school?

It’s easy to find a school, but it isn’t easy to find the right school. Having said that, you have to go with the trial and error method. Each individual with ASD is different, have differed needs and different ways of learning, but all have positive characteristics that can be used for their overall development. 

Poverty and disability grow together, it is a vicious cycle. Unfortunately, families from low income groups do not get the necessary intervention for their children, very often due to financial constraints.  Read about Tamahar here.

Tell us about your school in Lucknow and the I Support Foundation.

Our school in Lucknow opened in 2014. It is a non-profit organisation. This is what we do:

  • Development Plan - Right from the beginning as the kids are enrolled. The plans are charted out depending on the mutual interest of kids and parents. 
  • Regular monitoring of the Development plan graph to figure out and track overall growth.
  • Regular interaction with parents to discuss the progress made over 2 months (progress chart).
  • Free Education to autistic children whose parents can’t afford to pay. Tips to create toys with recycled material at home.
  • Tips and best practices are followed and shared with the parents and the guardian to ease the process of learning, so we don’t create stress for the special kids. We teach them the way they want to learn.
  • Focus on recreational activities - Teaching them football, cooking, dance, playing musical instruments, depending on the interest of the kids again.
  • Inclusive Society- ISF supports autistic and underprivileged kids. Underprivileged kids support the autistic kids and help nurture them.
  • One-on-One session for each kid- Focus on quality, vocational training.
  • Social trips to malls, theatre and gaming zone.
  • Children’s safety training to be imparted to parents to avoid molestation of special kids, which happens a lot.

You also have outreach programmes in Bangalore?

Yes, in Bangalore we conduct activities in government regular schools, special schools and orphanages.

Your best tips for parents of kids with special needs: 

  1. Learn to be the best advocate you can be for your child. Be informed. Accept the problem, don’t succumb to guilt. Quit doctor-shopping and believing in spiritual values and start rehabilitation at the earliest.
  2. Learn to talk about autism and be open and comfortable describing the disorder to others.
  3. Carve out special time for your special child. You can enjoy special moments with the family member with autism. Children with autism thrive on routine, so find one thing that you can do together that is structured, even if it is simply going to a park for fifteen minutes. If you go to the same park every week, chances are over time that activity will become easier and easier… it just takes time and patience. If you are having a difficult time trying to determine what you can do, ask your family. They will sincerely appreciate that you are making the effort. 
  4. Get involved with the autism community. Make friends with other parents who have children with autism. By meeting other parents you will have the support of families who understand your day-to-day challenges. Getting involved with autism advocacy is empowering and productive. You will be doing something for yourself as well as your child by being proactive. Join a support group. It may be helpful to listen or talk to people who have been through or are going through a similar experience. Support groups can be great sources of information about what services are available in your area and who provides them. You may have to try more than one to find a group that feels right to you.

Have things changed since your brother's school days?

Shivam, my younger brother, is 19 years old. He is a lovely boy and had all normal sequences and interests till he was 3. Infected by typhoid at only 3 years of age, Shivam is now autistic and non-verbal. As a child he used to be lost in his own world with the inability to recognise his own family members. We visited many temples, tried lots of medicines. His autism has made him phobic of heights, making him especially fearful of staircases. Like every autistic child, his interest span regarding an activity is limited; but he has a growing love towards travelling and cooking.

Shivam had less interest in academics. We always made sure he got basic training in holding a pencil correctly, using the toilet, interaction with guests, dining etiquette and training him in accordance to his interest i.e. he was more keen towards cooking as he is a foodie; we trained him in cooking. But the most important and gruelling part was to teach him to be patient. He turned out to be an avid learner, showing his brilliance at iPad games, knows sorting, colour combinations, shapes, cooking. We have regular visits for him to the theatre, malls, games arena. He is well trained and has shown brilliant results in managing the daily routine activities - shaving, brushing, taking a bath, using lift buttons, using gadgets, calculator and laptop.

The only thing that worked out for Shivam’s progress was early intervention, accepting the fact of him being autistic and working on his vocational training. It took us 16 years to have him learn this and his cooperation to learn the same. 

What are some of the resources that parents of such kids can and will need to tap on? 

- Special schools 

- Psychologists, Special Educators

- Diagnostic Services

- Pediatricians

- Rehabilitation centres

- Recreational activities - dance classes, swimming, cycling

Plus, you may need to consult some of the following specialists and therapists. Here is a brief and certainly not exhaustive or complete list.

  • Neurologist
  • Speech pathology/therapy
  • Occupational therapy
  • Applied Behavioral Analysis (ABA)
  • Social skills classes
  • TEACCH - Treatment And Education Of Autistic And Related Communication in Handicapped Children
  • Mentoring
  • Daily Life therapy
  • Workshops

Resources in Bangalore: http://www.patientsengage.com/resources/resources-children-autism-bangalore

You can read about Juhi, Bobby and Shivam’s journey here

You can also find out more about their school at www.facebook.com/isupportfoundn

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