Kummi adi !!

 Nishant as a child was always very social – smiling at the person on the lift, waving to the neighbors – being a perfect host to someone who comes home and so on . At school also he would try to include himself with children his age or size and try to play the games they were playing. Later in integrated school and special school also he found a few friends and connected with them in some way or the other. Once he moved into Amaze and skill training started – he was a bit taken aback as the students who joined were younger than him and often had more challenges with socializing. He made friends with the some of the staff initially. Overtime he formed “silent” bonds with his peers @Amaze and currently I am glad to see them connect and support each other. [even through meltdowns and anxiety]

https://www.patientsengage.com/personal-voices/forging-friendships-spectrum

During this period 2014-2020, we had several setbacks on the personal front – like Ram’s parent’s falling ill and then passing on, Nivi entering 8^th grade and becoming less available for social outings, my parents moving in and needing more support. Our “social circle” just shrunk and so did Nishant’s [and I must say Nivriti’s] social skills. However, we were still in touch with the extended family and weddings and events were opportunities to connect back with them. Then Covid struck and we were home bound for 2 years and for another two years we battled the illnesses of my dad’s and Ram and then suddenly lost both of them and we slid down to "zero" in terms of  socializing for more than 4 years.

In 2024 we started making concerted efforts to go out on trips, visit relatives again, go out for lunch or dinner with friends and other outings. Nishant struggled with reentering the “social” arena at times. Sometimes he would not be friendly and sometimes the whole gathering would be too overwhelming for him.  He had started being polite with the people he saw everyday acknowledging them in his own ways and connecting back with his teachers and friends too . He missed his Dad a lot so if he saw any uncle who was around his Dad’s age or had a balding head he would approach them and sometimes kiss them on the head like he would for his Dad  .It seemed inappropriate to some, but once I explained it they would not object .

Last weekend I had travelled out of town and he was at home with my mom and they had some unexpected guests. He discussed their visit with me today as follows.

 

Typed on Clicker 

Towards the end of December 2024, we went to Chennai on a 4-day trip. My aunt had arranged for a get together of the extended family. Nishant enjoyed the train travel [after 6 years] and stay at my uncle’s place [where he was pampered to the core]. He also liked interacting with his cousins who were also trying to include him as much as possible. It culminated in a whole day [9am – 5pm] meeting in a hall with a loosely held agenda as there was no formal function or event. We reached the event a bit late- at 11 am as I wanted him to at least have lunch there and not run out before that. However, Nishant was very chill and comfortable in the gathering . He was also accepted and included by the relatives [some who had never met him before – these were some distant aunts /uncles, grand aunts /uncles, and cousins]. Initially he typed that he did not know how to interact - but later figured out that he just had to go with the flow .

I made a small speech about my aunt who I love and admire a lot and I started tearing up – he came right up to me and wiped my tears and the whole hall clapped for him – it was such a poignant moment for all of us. He enjoyed the lunch and did not ask to go back after that - in fact  we stayed on till the end. My aunt had composed a “kummi” and her granddaughters had practiced to dance for it – he decided to spontaneously join them and they also sweetly included him – it was so endearing. Following hs lead everyone joined in the "kummi"  and danced with each other. It felt so nice to find unconditional acceptance from the extended family [close family was always very supportive of us]. 

 

I am so heartened by Nishant's intention to socialize and be included and that he is thinking of ways to connect and he is asking questions about how he can go about that. I really hope he can slowly increase his circle and connect to more and more friends and relatives and find joy in connecting.

Kummi:

Kumi is a traditional group dance from Tamilnadu and Kerala .Here Kummi is an important social activity which brings the community together especially during festivals, harvest seasons, and family occasions. Primarily performed by women, this vibrant dance form combines rhythmic clapping, dynamic movements, and heartfelt singing to create a captivating experience. Rooted in agrarian societies, Kummi reflects the simplicity and harmony of rural life, making it a treasured expression of collective joy and unity. [Explanation adapted from the internet]

 

 

Summary of INTERVENTIONS DONE FOR NISHANT

Speech and Language  : [Age 2.5 – 6 ,7-8 ] [Done by leading SLP’s in Bangalore ]  His speech regressed from age 2 ,  Speech therapy was in place from age2,5 ..was vocal but inconsistent regressed  his speech further at age 5  it complete stopped  as oral imitation based drills were difficult for him   [he had apraxia of speech also ].This intervention  helped build receptive language  and concepts for him

Language and Communication : [Age 6- 9 ] Systematic methods -  PECS , VB/ABA[implemented by me   using the actual manuals and some basic training]  brought initiation and some learning behavior and functional communication [thru PECS[  ..further improved by use of Technology ..Voca devices ..Clicker on Touch screen Laptop and internet resources [Age 8 – 13] and ipad based ..Avaz and Clicker6 [Age 14 onwards ]

The programs in the book “Teach me Language”  , “Do– Watch –Listen– Say “ helped a lot to build advanced language concepts and  communication

RPM : [Age 8 – current][implemented by me .. I trained under Soma ]  Improved attention considerably , brought learning behavior like sitting at table for 45 minutes , responding … helped to bring consistency with response to written choices , improved speed of spelling on letter chart and later on keyboard and ipad . Still needs intermittent prompting by   familiar partner to comfortably maintain attention and response.

OT/SIT [Age 3-6 , 13-14, 16-17 ] Early OT [Done by leading OT in Bangalore ] brought about 20 % change with coordination and planning the first time around ..Hyperactivity and sensory issues remained or heightened .Later did a lot of activities from “Out of sync Child” which helped .
At older ages[done in Coimbatore ]  OT had no effect at all.

Gym and sports training  [Privately done age 7 onwards to date ] – Built stamina , endurance ..developed cycling , walking ,,,both for 7-8 km , some ball skills [football /Basketball] but was unable to play sport in team    ..became more hyperactive with this  but regular massage helped to regulate this .

Yoga :[Age 13- 17 ]  and practiced intermittently thereafter ..really helped with flexibility of joints .and improved coordination and planning largely .

Perception enrichment program  [Age 7-10 ] [Done by OT from US who was in Bangalore or persons trained by her ] Improved visual perception skills ..he started copying drawings and doing online jigsaw puzzles etc .Later following Chalk board training [Kephart ][from a book]   he started copying and writing at age 13 .Writing is not still his preferred response mode.We did millions of pre-writing programs before this which did not impact him. Loves Art esp on computer now

Berad’s AIT -  Age  10  in CT ,USA  – Helped with bringing down Auditory sensitivity , visual and auditory stimming completely disappeared and listening to multiple voices improved .He started listening to a range of music from classical to pop ..including whatever we were playing for him from childhood .Stopped watching videos repetitively .

TLP [The listening Program ]  [8 week program  CD based ] ..Administered at age 17  ..Improved /auditory/listening considerably  ..started responding to variety of instructors and requesting for music whenever he needed to calm down [self regulation came in ]

Vision  assessment and treatment : [Age 12 ] ..by Devt vision therapist [USA]   ..was prescribed prism glasses which he refused to wear consistently .

Behavior : Regressed with speech programs where he was forced to repeat orally  [age 5-6] , Regressed with diet infractions [Sweets , and heavy proteins including cheese , paneer and non veg] Crying , Sleep issues  ,Hyperactivity age [Age 2-6] and later Hyperactivity ,Self injury  [Age 13onwards] , regressed after mercury amalgam filling at age 6.5 [Self injury ,Screaming ], Regressed after antibiotics use as well as DTP vaccine [Age 9-10] [Sleep disturbance,Urine control]  further  regressed at puberty [age 11-12 ] chelation ??? [Self injury , Unable to focus ,hyperactivity], developed aimless walking [age 14 onwards ] when unengaged in special school …

Behavior severely regressed at age 18 transition to adulthood  .Root cause was  found to be gut issues ..when we treated for this  90% of behaviors went away. When he had stomach issues , he went through a  period  where he would get into sudden bouts of rage , shouting , severe self injury and aggression esp towards adult handling him  .He communicated through  ipad that he had severe stomach pain and was unable to regulate his rage .We helped him with medicines [Alopathic and Naturopathic ] to settle his stomach issues , diet ..reducing sugars and heavy proteins , lighter flexible schedule for activities , relaxation technique practice runs when he was calmer , Cognitive work for him to understand his body , digestion and sensory systems and Behavior etc etc . Now these have reduced to almost nil and are lower in duration and intensity and  his hyperactivity has also gone away completely . ABA based techniques, Cognitive Behavior training , Sensory diet ,were in place always 

Psychiatrist had suggested to increase mood medication [he is still on a low dose  ..which we are hoping to wean off] and use restraint  but did not so as we felt it is not tackling the root cause .

Biomedical treatments :

Diet [GFCFSF] :Age[ 7- 13] – Helped to improve behavior and focus by 20% at the beginning and further improved when we did Ayurvedic treatments and some internal herbs along with it …Behavior became very manageable at age 9 ..9 – 11 he coped well in mainstream school in the US , adapted to the new environment and new aide etc Tested positive in urinary peptide test for Casein .

Still reacts adversely to heavy animal protiens and sugars

Ayurvedic treatments : [Age 8- 10  ]  and later age 13-16. ..Massage Dhara , Kizhi and internally a few powders  .Responded very well ..reduced hyperactivity and Tactile issues . Improved attention and regulated gut and allergies

Gram + , Gram –ve , Antibiotics + Antifungal treatments [suggested by Devt Paediatrician , Hyd]  [Age 9.5] …Severe regression including toilet training went away ..we stopped after couple of months and had to use naturopathic and homeopathic medicines to recover his gut at that point  .

IV Chelation :[Age 11- 13]  ..no positive effects ..in fact probably further regression and had to be mildly medicated with Resperidone at age 12 in the US to remain in school due to mood swings and aggression .

Multiple Supplements  [including Supernuthera ,DMG Zinc ..tried almost 32 different ones ..not much effect  ]  Only Grapefruit seed extract and Probiotics seemed to help with some improvement at that point . We are currently using GSE and Probiotics  again from age 19 along with a Parasite killing protocol every 2-3 months , which includes allopathic medicines , Castor oil , Neem , Activated charcoal ..sometimes local herbs and kashayams …and it has helped tremendously with his stomach ailments and behavior 

HBOT [40 dives in a soft chamber ] : [Age 12 ] No effect on him  at that point .

Cranioscharal therapy  [10 sittings at age 13, 5 sittings at age 19 ] ..not much effect on him

Hippotherapy :Age [9-10] Bangalore ...No significant gains but enjoyed the activity and loved the horses

Mainstream Schooling with support  :Play school [age 2-3]  Montessori age 3-7 Mainstream school in Bangalore [Class 1-3] - helped  him with early literacy skills .peer interaction  .Helped us to understand teaching goals and social goals  and work towards outcomes.In the US for first 1,5 years did well in mainstream with an aide helping him then had to be transferred to special section due to behavior issues in 6th grade . Always supplemented by my constant work with him to understand concepts through experiential learning, visuals and videos and RPM

Special School :Age 13- 17 ..Helped with learning some splinter vocational skills but communication and behavior went down and learning was maintained only by 1-1 work with me . He liked being with a group of students his age and that was a plus .

Skill training program @Amaze Age 17- current :20 years  [10am – 5pm ] -Computer skills , Literacy , Lamination , Cooking , Gardening , Social skills ART, Music , Movement , Drama , Fitness , sports....

He is focused and responsible ..self regulated , follows his schedule ..works with minimum supervision with multiple adults .Communication has improved tremendously both through ipad and using gestures and body language .Social skills are good .Does computer based work [Graphics and Ms Office ]  , Lamination , Cooking .Some fatigue and laziness on some days .

100% independent ..in fact does multiple chores at home ..many without prompting example :he has taken it as his responsibility ..example bringing in the milk in the morning and keeping the packets in the fridge ,chopping vegetables ,making tea ,laundry etc..72 year old grandmother is able to manage him easily when parents are not around though he is 6 foot tall .

Adventure and travel: [Age 1-current ]We did this more often before initiation of  Amaze and he enjoyed and adapted thoroughly ..We have traveled the world by Air and in India by road and train . Of late as we  are busy as a family we are travelling less ..nevertheless enjoys himself …earlier would be super excited in a beach or mountain or with animals ..now is just okay with it  ..very adult reaction I think .

Drama for Autism : [since 16 years ]  mostly implemented by me under guidance of Dr Ram ..I have used these techniques individually and in a group sitting at Amaze with very good improvement in the areas of initiation , imitation ,joint attention social reciprocity , using the body and sounds to communicate , group skills like turn taking , waiting , following group instructions etc
Also Art , Movement and Music based techniques learnt at the Velvi festivals have helped students with engagement and exploration , general calmness and well being , learning to have fun in a group etc etc …

Technology based intervention : I have been using technology for him since age 1.5 even when he was not diagnosed he would love interactive games on the computer and I have always used it as a tool for teaching and engagement rather than as a baby sitter  .He uses technology in all spheres now …his ipad is his lifeline [Communication ], leisure tool [Music , Youtube videos[ususally cooking shows]  , Games] , uses it as a memory bag ..loves to browse old photos and videos …Computer also for literacy ,creativity and vocational skills