What after me?

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“What after me?” is the big question most families of people with developmental disabilities like ID and autism face. They worry about the future care and support of the people with developmental disabilities that they look after.

Within United Kingdom where I work, there are well developed social care systems, supported living, specialist residential care as well as short break arrangements. In spite of the availability of these provisions, I do come across parents who worr about the future of their children once they are gone.

Within a low and middle income country, this is further intensified due to lack of clear provisions for people with developmental disabilities to live with out family support. While strong family involvement in countries like India is largely positive, lack of formal support systems presents a significant worry for parents. This is particularly so in the context of nuclear families becoming a norm instead of the traditional joint set ups, sibling migrating to different part of the country or even world to pursue thier livlihood.

In this context it is important that parents / families of people with developmental disorders like autism have the right support as early as possible to think and plan the support. A number of issues would need to be carefully weighed for parents to make these decisions.

National Institute of Mental Health and neurosciences (NIMHANS) produced a leaflet called “What is after me?” to provide a reasonably comprehensive, yet succint guidance for parents.

What after me?

Assisted living (Supported living) provisions in India

There is an increasing interest in the development of assisted / supported living for people with Intellectual Disability and or autism in India. Action for autism web site has some useful information on this.

Action for autism information on assisted living.

Report of Expert Committee on Assisted Living: Kerala state planning board set up a committee to scope assisted living.

In this context, I am so pleased to see the supported living project by the Akshadhaa foundation, a parent based charity in Bangalore.

Akshadhaa foundation- Bengaluru

Akshadhaa has been actively involved in supporting children and young adults with developmental disabilities over the last 10 years. Akshadhaa is led by a dynamic couple (Sumana and Anirban) who have a daughter with autism and are passionate about changing the future of people with developmental disorders. Please see below an infogram describing the evolution of Akshadhaa over the last 10 years.

Akshadhaa supported living (assisted living): Bengaluru

This project is currently in development and expected to be ready by early 2024. This is set in a rural background, yet close to Bengaluru.

Akshadhaaa aims to create a vibrant community where people with special needs can thrive with as much independence as possible. For the parents it gives the opportunity to participate or sit back and relax to see their child lead an independent life. The facilities are meticulously aimed to provide a healthy, happy and fulfilled life for all the residents.

The project envisages residential quarters for the special needs individuals with the parents quarters in the same campus but in a separate sections. Apart from these residential facilities, There will be provision for a Resource center, Hospital, staff quarters, canteens, auditoriums, guest house, vocational training centre and a lot of free open spaces. The project with aim for the highest Green Rating, in an effort to ensure sustainability and environment friendliness. The project aims to adopt smart environment management policies to ensure the rhythm with the overall harmony of the AALP community. I look forward to this shaping up as this is a collaboration of like minded parents rather than a commercial venture.

International Yoga day 2020

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Yoga’s roots goes as far back as probably the Indus Valley Civilisation (BC 3000). Sage Patanjali summarised the wisdom of centuries in to 196 short verses called “Yoga Sutras”.

Yoga, although popularly symbolised by the body postures called asanas, has always been focused on “finding the inner you”. The whole purpose of the asanas is to still your mind so that you begin to see the real you.

Yoga has been put in to therapeutic context because of its profound effect on body and mind. There are a number of health conditions where Yoga has been used either as an alternative medicine or an excellent addition to other treatment modalities. The table below summarises some examples of these. It has to be said that although Yoga has been an excellent addition, its role is still being assessed for the extent of therapeutic benefit. Therefore people should not jump into yoga after abandoning other treatment expecting wonders from Yoga. Any benefits of Yoga emerges gradually over a period of time when it is practiced regularly under the supervision of a good teacher.


Health Condition
Evidence
Anxiety Effect of yoga-based interventions for anxiety symptoms: A meta-analysis of randomised controlled trials
StressEffects of Yoga on Stress Among Healthy Adults: A Systematic Review
DiabetesDiabetes Prevention through Yoga-Based Lifestyle: A Pan-India Randomised Controlled Trial
Depression and other psychiatric conditionsEffectiveness of Yoga Therapy as a Complementary Treatment for Major Psychiatric Disorders: A Meta-Analysis
ADHDInterventions Based on Mind–Body Therapies for the Improvement of Attention-Deficit/Hyperactivity Disorder Symptoms in Youth: A Systematic Review
Asthma (as an adjunctive therapy)Effect of 6 months of yoga practice on quality of life among patients with asthma: A randomised control trial
Overall evidence is pointing to the role of Yoga as a health and well being activity rather than a treatment for specific condition. It as an adjunctive (an addition to the standard treatment) improves the quality of life and general well being which is very important.

Yoga in Autism

The core features of autism currently has no treatment. The use of various treatments is for helping autistic people to adapt to their surrounding better and reducing additional problems such as increase in anxiety or problem behaviours. Yoga is not an exception to this.

That said, Yoga has been found to be effective in the following situations

Teaching Yoga to autistic people

A Yoga teacher for children or adults with autism needs to take account of their ability level, sensory needs as well as other preferences. Knowing your students well is an important element of any teaching but most important in this context.

Some general tips as below (adapted from Teaching Yoga to people with autism)

  • Take time to ensure that people are comfortable in the personal space that they have.
  • Do not expect eye contact. They are listening even with out eye contact.
  • Break down the sequences in to simple components.
  • Teach each component by repetitive demonstration (Visual cues are important for autistic people)
  • Be prepared to repeat sequences until students have understood these well.

Yoga for Children in a fun way- please see it in youtube kids

Surviving this difficult time

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As you all are experiencing, this is a difficult time. For children with autism in particular this period presents additional challenges (change of routine, loss of familiar people etc). I have been speaking to people (families, people with autism, special school teachers and health staff) both in UK and India about how families / carers are overcoming the challenges during this period.

I hear both positive stories of how people have overcome these challenges as well as how families are struggling. I spoke to Akshadhaa foundation in Bangalore and heard their inspiring experience of using technology to provide support and educational activities for the children who use their service.

Listen to the Akshadhaa foundation story.

I have heard how an organisation in UK has used video exercise lessons, online mindfulness sessions adapted to the needs of people with autism. They also used imaginative weekly challenges and prizes to keep service users engaged. I was impressed by their creativeness around this. Further information on this is not fully online yet but you can get a feel of this following the link below

Heroic care news

I spoke to a teacher from rural India who is leading an exceptional special school for children with a variety of disabilities. She talked about the efforts they have taken to contact families over phone, whatsapp etc. They provided instructions and then followed up the children’s progress over phone or whatsapp inspiring and motivating children to continue the work.

In spite of the above efforts, I am also aware of people with autism and their families really struggling to cope with the locked down leading to an increase in anxiety and behaviours and over reliance on medications to manage behaviours. There were also some extreme situations in India where some families had to lock up their children in a room even if it was for a short duration.

I hope that we can learn from the innovations which came out of this adversity but it is very important that we learn from the hardship as well. A society is considered developed when it is thinking of the most vulnerable members. I do hope governments and governmental organisations would consider the needs of people with autism and people who are similarly vulnerable as we continue the locked down and if we have to go down the same route in future.

Enabling the development of professional artists with autism- Sense Kaleidoscope

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Children with autism are so variable in their abilities and talents. However, most of them struggle in meeting the demands of the traditional educational system. Some children with autism are luck in the sense that persuasive parents or other people around them mould the system in such a way that becomes supportive of the individual. When this happens, we get talented successful and happy adults with autism.
Unfortunately, in the majority of the cases, this does not happen and subsequently, children shut down and become reclusive, rebel and become challenging in their behaviours or underachieve their potential. In any of these situations, we lose a wonderful talent, a magnificent individual and an asset to the world we are living in.
clay work
Sense Kaleidoscope led by Akshayee Shetty who has an art background and Anima Nair who has techie background, strives to create an environment for children and adults with autism where they can achieve their true potential using art assisted by the right educational technique and technology.
I was so impressed in my visit to the centre in December 2018 by their dedication to this cause, the systematic approach to building an educational process and highly creative use of resources.
Akshayee has done a TEDxBMSCE talk on this work and her ambition. This talk is very informative.
stencil
Sense Kaleidoscope ’s aim is not only to use art as a medium for educating children (which of course they do in a number of creative ways) but also create a sustainable career for the talented artists with autism. They do this by presentation in important events like “art biennale”. There is very little efforts currently in creating a sustainable career for people with autism. A great effort by Akshayee and Anima. Please check out their Facebook page and Instagram.

Steppingstone center

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Stepping stone centre believes in the potential of every child and is focused on supporting children with autism and other developmental disabilities in achieving their potential. Myself and Nasser were delighted to meet the Cheif Operating Officer of the steppingstone centre K. Amritha when I was in Bengaluru in December 2018.

Using the framework of Applied Behavioural Analysis (ABA), the centre has teachers, psychologists, occupational therapists and Speech and Language therapists to provide truly multidisciplinary support for the children. There is a strong emphasis on a multidisciplinary approach and collaborating with mainstream facilities in enabling children to achieve their potential.
Introduction to Steppingstone for a child and family start with “Early Intervention Program” which is a 6 weeks program for the child and parents focused on enabling parents with skills in supporting their children and “Individual Education Plan (IEP)” for the child. Steppingstone is focused on creating a clear pathway for the children both within the organisation as well as with their partner organisations.
They have also developed a strong academic link with Binghampton University in New York and Christ University in Bengaluru for development of training programmes and research which has to be congratulated.

Please find more information on their web site.

http://steppingstonescenter.in/

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Pet therapy for children with autism

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Interacting with pet animals will be helpful for children with autism. There have been a number of examples of children benefitting from interacting with animals. Dogs and horses are the pet animals commonly used for this purpose.
Studies on the effect of pet therapy on children with autism show generally a positive effect.
Parents must, however, consider sensitivities of their child before considering if a pet therapy would be helpful or not. It is also better not to expect any dramatic improvement in their autism with pet therapy alone.
There are not many places in Bangalore which offer pet therapy as an option for children with autism.
The Paws and Hooves project is an excellent initiative by a group of people of people who are passionate about the potential of pet therapy led by Subhadra Cherukuri who have extensive experience starting from her childhood in working with animals and Rachel Issac who is a physiotherapist. They are innovative and passionate about the potential for pet therapy in children with developmental and other problems.  Please see below brief information and details of their own web site. Pictures provided here are supplied by “The Paws and Hooves Project”
The Paws and Hooves project from Wag-ville is an integrated multi-disciplinary animal-assisted therapy center in Bangalore which provides Equine Assisted Therapy (Hippotherapy or Horse-assisted therapy) and Canine assisted Therapy (dog-assisted therapy) through a team of certified Animal Assisted Therapy practitioners, consulting physiotherapists, psychologists, psychiatrists, and neurologists.
Links to their websites for more information
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Importance of Hope

Writing this on a Xmas day (2017) which symbolises the universal hope. Having a child with autism has its ups and downs. It is easy when everything seems difficult or impossible for one to feel so beaten and loose hope.

I have seen a couple who brought up two children with autism and admired their resourcefulness. I asked them “How did you manage to pull through those difficult times?”

Their answer was simple yet most important. Finding hope in even the difficult time by focusing on a small ray of sunshine – a smile that the little Ines had, a small skill that they have recently acquired or something that they have done (even if a small activity) which parents thought that they would never do). They counted on these small things to build up their hope. When I saw them both parents were very elderly having managed to get the two children in to a good supported living place where they have lots of independence, opportunity to work, mix with people but all in a supported and protected environment.

Hope makes what is seemingly impossible possible. Don’t give up that. That is what makes or breaks. Hope comes from faith ( in whatever you believe in), focusing on positive even small positive and supporting each other to do that.

Have a merry Xmas and a happy new year 2018.

Satheesh

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Resources for supporting Gifted children with autism 

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Gifted children with Asperger’s syndrome: this article is very useful in identifying and responding to gifted children with Asperger’s syndrome.

GBeing gifted and have a special educational needs: an article exploring the needs of children who are gifted and talented while having special educational needs at the same time.

Paradox of giftedness and autism: information for families from the University of Iowa.

Paradox of giftedness and autism: information for professionals from the University of Iowa.

Advocating for your gifted child with autism: This is a very useful,information for understanding how the child could be supported.

Helping Gifted Children with Autistic Spectrum Conditions Succeed.

Twice Exceptional Doesn’t Have To Be Twice as Hard: Experience of a mother and her gifted daughter.

Myths about gifted children busted

Swanand foundation – nurturing gifted children, a pune based organisation providing information and support to gifted children. This organisation is not specific to children with autism though.

Mind Springs – An organisation started by Usha Pandit, a renowned educationalist. This organisation is Mumbai based.