Autism and ADLs

Autism and Activities of Daily Living (ADLs)

Dated 23/7/18 to 28/7/18

Activities of daily living are routine activities people do everyday without assistance.The performance of individuals in the spectrum in basic ADL skills (eating,bathing,toileting,dressing,telephone skills,finance management ,shopping and so on...)determine the type of long term care and assistance required for the individual in the spectrum.

The discussion focused mainly on 1.Finance management and
 Shopping skills
2.Telephone skills
As requested by Dr.Priya Manoj.

Finance Management and Shopping

The discussion revealed the pre requites required for finance management as the following

*number skills
*money skills (identification,counting,managing a wallet etc)
*using money efficiently
*problem solving and decision making
*budgeting and purchasing
*using and managing credit cards....

A child in the spectrum from the early ages itself has to be taught identification of currency notes,coins it's values and basic math skills of addition and subtraction with mental calculation or with the help of a calculator.Parents stressed on the fact that the concept of "saving and spending" should be taught with prime importance.Many spoke in favour of teaching transactions through a credit card as currency might change and we are moving ahead to a cashless society. Spending money judiciously is another important skill to be acquired.It is quite important to teach them distinguish "what's needed and what's wanted" from a purchase list for wise money expenditure.

It is quite important to develop healthy money habits and identifying unnecessary expenditure .For this setting up "mock banks" for older kids and "piggy banks" for smaller kids to understand and practise the concept of saving is inevitable.

Therapists demonstrated how a mock shop was set up to teach shopping with items having price tags and model/original currencies and coins.The pre requites required for shopping is  learning
*MRP
*Bills
*Matching currency and price tags.
Therapists pointed out that they were quite successful in teaching the kids shopping skills initially with assistance and later by fading away assistance.

Parents were in favour of providing a fixed income as pocket money which challenges the learner to determine what's necessary and what's dispensible from the list of items the individual has made.It was adviced always to follow up shopping with a budget calculation that should be rewarded.

Shopping help

*Give the written list (with/without pictures)
*start with one or 2 items
*practice is same shopping centre during quiet hours
(These visits should not be used for actual shopping.Remember we are teaching them to be independent)

Telephone Skills

One of the most important skills to be acquired in this age ,parents had many doubts  owing to sensory pertaining sensory processing disorders and those were cleared by professionals.

Pre requisites for telephone skills
*identifying and recalling phone numbers
*Dialling
*Answering verbally/through Acc
*Typing messages
*Using camera responsibily
*Listening to recorded messages.

Parents revealed that some kids prefer video call or text messages than attending to audio calls.Many preferred speakers as well.Dr Susan Mary Lincoln explained why some kids prefer stereo sound to mono sound.She also suggested ear phones for our kids.

It is observed that background noise or static on the line will make attending quite difficult for our kids.Keeping the phone in loudspeaker is a solution for the same thereby amplifying the voice on the receiver.
Video calls (skype/imo) were observed to be more effective for our kids to understand the emotion of the person speaking in a better way when compared to audio calls.

How to help develop telephone skills

*Role play
*Telephone scenario cards
*Practice talking to friends ,family and relatives

We analyse that the discussion didn't favour parents of kids who struggle with basic ADL skills and the discussion was focused towards children with 6+ years.However any issues you deal with can be posted in the group and the members will try to help each other

We express our sincere gratitude to Swaminathan Rajan who provided us with Resouce materials on iADLs.

Active participants

Lakshmi Jayakrishnan
Maya Suresh
Priti Vadakkath
Gina
Kunjala
Viji
Chitra Paul

Thank you all

#Asd Parents and Therapists Group,Kerala

https://mymanycoloureddays.com/2017/03/10/shopping/

https://mymanycoloureddays.com/2017/03/10/shopping/

https://www.pinterest.com/pin/157837161914311887/

https://youtu.be/rjFwdUf8dAk

http://lastingthumbprints.com/8-ways-to-teach-children-their-address-and-phone-number/

https://www.yourtherapysource.com/blog1/category/autism/

Books for Asd beginners

*Books for beginners

Lady Bird series
Jolly Phonics
Navneet reader series
Peppa Pig
Bubbles books
Bob books
101 moral stories from Inikao.
Hansel and Gretel
Puffin books
Scholastic books
Eric Hill Spot Collections
Random house books
Pratham books
Mo willems series
www.starfall.com
http://oxfordowl.co.uk
http://www.readworks.org

#Asd Parents and Therapists Group,Kerala.

Autism and Challenging behaviours (Aggression)

Summarizing the whatsapp discussion on Autism and Challenging Behaviours (Aggression)

Dated 20/7/18 to 26/7/18

Challenging Behaviours are a type of behaviour to adjust to a situation.They can be disruptive,offtask or avoidance behaviours.

The discussion mainly focussed on identifying the triggers,observing addressing and managing challenging behaviours as well.Though challenging behaviour is manageable in an early age,it's quite stressful for the parent of a teen or adult in the spectrum.

Triggers for disruptive behaviour

*gain attention from adult or peer group
*gain an object,activity or event
*unbearable pain,health issues(ADHD,epilepsy,OCD,psychiatric comorbidity)
*a feeling of no control over the situation or event
*communication deficits and incapability to understand what is happening around them
*problems in decision making
*change in routine
*transition between activities
*sleep disorders and tiredness
*anxiety and stress
*Sensory issues (proprioceptive,gustatory,kinesthetic,visual,auditory...) and so on..

Parents pointed out that a child who insists for a car ride or on a swing at any hour of the day could be to satisfy his sensory needs.Discussion moved to the relevance of identifying core temperament traits like the degree of adaptability,mood swings,attention span,intensity of reactions,considering sensory threshold etc

Self abuse was said to be common in children with emotional regulation problems.Biting (self or others) would be providing strong proprioceptive inputs for jaws as well as to arms.Sensory overload,uncertainty and physical pain is at the root of self abuse.

*Gina very well explained the role of testosterone surge during puberty as a cause for aggression. She also pointed out that kids who are abused at home or are bullied in public places are prone to disruptive behaviour
*Asha Sanjeev revealed performance anxiety as a cause for aggressive behaviour.
*Damage to limbic system of amygdala which controls emotions is another cause for aggression. Mutation of Monoamine oxidase A is another reason to site.MOA deficiency is associated with a wide range of problems including aggression.
*Chitra Chandran very well explained the triggers and ways to tackle the behaviour according to ABA methods.She suggested that functional communication,self concept and motivation as the key to control aggression.
*Maya Suresh explained on how to manage  aggression. According to her analysing the situation,followed by calming the child using coping mechanisms with minimal verbal instruction is the necessity of the hour.She also pointed on the emotional health of the caretaker (parent/others) who's dealing with the situation.
*Chitra Paul suggested that frustration can lead to aggresion. Playing sound tracks of the child's choice would help to calm down.She also mentioned that some kids in the spectrum once calmed down would feel resentful and apologise for their behaviour.She explained the disadvantages of physical punishments  in dealing an aggressive behaviour.Asking to take deep breaths and typing instructions might work as there are high chances for the auditory processing to shut down.
*Rosemy pointed at physical illness as the culprit for aggression
*Ditty Sheebu,Principal ,Vigyan Valley provided information on how they deal with their students who throws an aggressive behaviour which was well appreciated by many and their behaviour management strategies were quite positive.

How Homeopathy can Help Aggresion.

Mr Karthik Ramaswami described the role of Five Phos.6x, Kali Phos, Ferr phos,Nat Phos and Calc Phos in calming the kids down.Parents suggested Rescue remedies gave temporary relief from aggression.Mrs Saswati Singh pointed out that holistic approach and homeopathy helped to deal with aggression.

Controlling aggressive behaviour in public places

*planning is the key ,show Google pic of the place in advance
*avoid peak hours
*make sure the child is well fed and hydrated
*carry emergency reinforcers
*move to less crowded area
*use shortest phrases for communicating
*visit the child's favourite place at the end of the trip.

Managing Challenging Behaviour

*Help to develop self control
*Respect their opinions but at the same time be firm on behavioural limits
*Be a good role model for the child
*Model of ABC Recording sheet was provided (antecedent,behaviour,consequence)to better understand how to help aggression.
*Modify the environment
*Teach presocial behaviour and social skills which are alternatives

Discussing further on behaviour management, it was adviced to remove edibles for efficacious management and to introduce socially contingible reinforcers (pat on the shoulder,words of praise and so on).Punishment was told to be a temporary fix and dint provide a long lasting behaviour.


The discussion ended on a positive note with a single question from Mr Karthik Ramaswamy."Is aggression a means of communication?"
Definitely Yes
Aggression is a VOICE.It is an attempt to communicate ,but since they lack skills to communicate in the right way, teaching functional communication is the key to tackle aggression.

Participants
Dr Gayathri.S
Dr Roshni Anirudhan.
Priti Vadakkath
Veena
Eilu
Beena Balakrishnan

Thank you all

(The discussion is in no way conclusive or decisive.It definitely holds the scope for extension studies. )

#Asd parents and Therapists Group,Kerala

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4922773/

http://PDFcampbellmgold.com

https://www.google.co.in/url?sa=t&source=web&rct=j&url=http://campbellmgold.com/archive_health/biochemic_handbook_schuessler.pdf&ved=2ahUKEwjp-NGB0K_cAhXDvI8KHYaNA3cQFjABegQIBRAB&usg=AOvVaw2TXxdGD7BIwhL86LZ2Cae3

https://www.ncbi.nlm.nih.gov/pubmed/10904119/

http://orthomolecular.org/library/articles/webach.shtml

Sensory Help for Asd

Summarizing the Whatsapp discussion on activities for sensory diet,accomodating sensory diets in routine,preparing kids for school and environmental accomodations

Dated  30/5/18    to 4/6/18

The discussion mainly highlighted the requirement for body awareness (proprioception) as the foundational stage for strong tactile,fine/gross motor activities.Activities required for strengthening spatial relations were suggested.The advantages of writing on vertical and horizontal surfaces to improve writing skills were too mentioned. Many parents suggested the use of tweezers,air writing,bubble wrap popping etc to strengthen sensory integration.

The worth of tactile awareness by using brushes, massages,tactile bins,bubble bath,foams,textured mats and weighted blankets were discussed.

Sensory integration dysfunction emphasized on why kids are being hyposensitive or hypersensitive to varied  stimuli.

Many therapists pointed out the importance core strengthening activities which automatically helped for improving fine /gross motor activities.Parents and therapists were equivocal in introducing daily chores as pre vocational skills for 8yrs and up.

Many highlighted the relevance of nature friendly games  and cooking prep skills like peeling ,washing etc to satisfy the sensory needs.

Many parents preferred  providing a sensory diet suited for the child before school hours began;ranging from massages to swings to resistant bands.Parents discussed on the relevance of keeping sensory toys in School bags or sticking velcro on table top to satisfy sensory needs and to improve sitting tolerance.They also suggested providing strawed water bottles, providing textured books, filling lunch boxes with crunchy chewy balanced food items.

Therapists and parents cautioned on the negative responses (shortness of breath,excessive yawning and sweating) to be observed while undergoing a sensory integration programme.

The merits of oral placement therapy for  normalizing oral sensory system to augment proper feeding,speech production and clarity were discussed.Oral sensory seekers usually try to stimulate the tempero mandibular joint ,and those with oral tactile sensitivity avoided to try varied food items.

The importance of ear defenders, wobble chair ,use of lycra undergarments(for hug lovers),use of aromatic sweat bands/wrist bands were mentioned.

For kids with oral sensitivity Collins curve toothbrush and unflavoured paste Oral nurse were recommended.

Washroom sensory strategies and snack time sensory strategies were discussed under environmental accomodations for school and Child settings.The discussions were wound up on how to prepare the kids for school reopening and  suggestion  on considering ICSE syllabus  as a reference for homeschooled kids.

_Active participants_

Maya Suresh
Devyna Lembard
Sanjaya
Shija
Parvathy Ragesh
Shereen Idikulla
Chitra Paul
Jasmeet
Swaminathan Rajan.

Thank you all for making the discussion as fruitful as possible.

Thank you all.

https://theinspiredtreehouse.com/10-calming-sensory-strategies-for-school/

https://docs.google.com/presentation/d/1Ut9didJPfM7Pj6oZhYsdKry3bEu4nlLT-78ihdSyyqs/mobilepresent?slide=id.p4

https://epidemicanswers.org/is-this-your-child/symptoms_and_diagnoses/sensory-processing-disorder/

https://epidemicanswers.org/is-this-your-child/symptoms_and_diagnoses/sensory-processing-disorder/

http://www.123homeschool4me.com/2017/03/number-line-missing-numbers-clip-sticks.html?m=1

https://www.yourtherapysource.com/product/sudoku-for-kids/?ref=14

http://mosswoodconnections.com/help-for-hands-fine-motor/

https://www.learning4kids.net/2016/03/27/fine-motor-work-station-or-centre-activity/

http://ilslearningcorner.com/2016-03-palmar-reflex-where-the-problem-begins-with-poor-handwriting-pencil-grip-and-fine-motor-development/

https://www.yourtherapysource.com/blog1/2016/09/28/task-analysis-bathing-children/

http://www.therapystreetforkids.com/CrossingMidline.html

http://ilslearningcorner.com/2016-08-rewire-the-brain-handbook-for-emotional-control-and-fine-motor-development/

https://youtu.be/v5rYiUlXL3Y

https://www.nationalautismresources.com/fine-motor-handwriting/fine-motor-activities/

Asd Parents and Therapists Group,Kerala

Multidisciplinary Approach in IEP

IEP and Multidisciplinary Approach (WhatsApp discussion)
(Suggested by Nidhin, SLP)

Dated 16/5/18 to 22/5/18

Discussion on the topic  highlighted the merits,choices,preferences,apprehensions and uncertainty in the area of IEP.

IEP focuses mainly on physical ,communication,social , emotional and developmental abilities of the child with enormous support from SEN,LSA,General education teachers and co ordinators of the concerned sections to find the potential and the deficits of the child and to nurture his skills.The child's interests,skills and hobbies form the pivot of framing IEP goals.Goals attained or unattained remained regularly monitored by various strategies.

Parents and professionals examined the merits and demerits of peer tutoring,co-teaching and multisensory approaches in IEP.
(Special thanks to *Maya Suresh* who enormously supplied with resources to augment the discussion.

On a comparative analysis on ongoing researches ,direct government aided funds ,inclusive education,public awareness and services provided for cwsn, our country is not at par with the western countries ;of which the most apprehension from the parents side remained on inclusive education..

Uncertainty reflected mostly on inclusive education or accomodations provided (providing lap tops,question paper design to suit the needs of the child etc) by Indian boards when compared to IB,IGCSE or similar ones though some were happy with the State Boards.Most concurred that 'inclusion' remained only on files.Discussion did not provide any information on how Iep goals were set in *Ernakulam*.


Suggestions were mostly on tuning in the academic assessment criteria to suit the ability of the child considering their motor deficits (e.g..Word/picture MCQs esp for nonverbal kids) and revised acts for the use of technology for cwsn. Training of general teachers to help Asd kids were too proposed.

Participants proposed to allow enough trained support staff  in the field and hoped for their regular monitoring and appraisals by an authorised body to provide quality education for Asd kids.

For lack of support and inclusions many parents have preferred homeschooling which could lead to NIOS to help structurally engage the kids.NIOS (par with CBSE/ICSE) at the same time is found to be a tad easier and flexible providing various accomodations in terms of academic assessments.

However parents were concerned on the post NIOS options for higher education.Participants were quite anxious on the future of adolescent and adult programmes available in the country though the works by NGOs like " *Oorjja* " is commendable.

http://www.oorjja.org/about-us.php

To end the note ,the challenges are met by the parents with much zeal fighting all odds.Discussion hoped the probability of various amendments and massive  awareness  for the  betterment of our community.

https://ldaamerica.org/accommodations-techniques-and-aids-for-learning/

https://www.understood.org/en/school-learning/partnering-with-childs-school/instructional-strategies/8-multisensory-techniques-for-teaching-reading

http://mamaot.com/30-fun-multisensory-writing-activities/

https://edufocus.blogspot.in/2015/03/multi-sensory-approach.html?m=1

https://youtu.be/zZCVxcvtP_w

https://hes-extraordinary.com/vestibular-input-activities/

https://vitallinks.com/therapeutic-listening/



Thank you all

#Asd Parents and Therapists Group,Kerala

NIOS,Homeschooling and Typing for Asd

Summarizing whatsapp discussion on NIOS,homeschooling , Facilitated Communication And Independent typing.

Dated 7/6/18 to 12/6/18.

The discussion started with @Venki The IllustSir's awesome  presentation to re emphasize  that most of our kids are visual learners .He explained how certain concepts can be taught by making some alterations to cartoon series of the child's choice.


To start with NIOS, Open Basic Education  is at three levels A,B and C corresponding to 3/5/8 standards.The discussion shared OBE  syllabus ,criteria and eligibility for enrolling OBE .However @Swaminathan Sir informed based on the NIOS prospectus that  Secondary (10th) can be done without OBE or schooling with just a self certification. The minimum age required is 14yrs.

Discussion further revealed that there is no need to attend a special school for enrolling into OBE and it can be done through NIOS  accredited centres ,of which 'Adarsh' is one in Kochi.The child should be 9yrs to do OBE level A. In certain cities like Mumbai to avail concessions submission of the disability certificate of the child documented with the concessions required (extra time,reader ,writer etc)is necessary.However in cities like Delhi there exists no such rule..Hence it's advisable to check the modifications required in disability certificate owing to regional differences with NIOS.

Regarding allowing a scribe for exam ,the scribe should be younger.(9th std child for 10th and allowing a caretaker for behaviour issues ) Now MOSJ have clearly clarified allowing adult writers.However a  10th pass opens the doors for group D Govt jobs and 12th pass for group C .For nonverbal kids the exam allows usage of laptops.Parents advised to arrange a  meet up with the scribe to  interact with them; and also have some practise before the exàm so that our children will be comfortable with a new person.

For 12th
https://www.quora.com/What-is-the-difference-in-stream-1-and-stream-2-in-NIOS/answer/MADHVENDRA?share=3083145e&srid=KSs6

http://www.niosadmission.com/nios-requirments/

For 10th(secondary) OBE is not a pre-requisite. A simple self certification by the candidate that he/she is ready for the exam suffices

For 12th the kid should have cleared the exam by a board recognised by NIOS )most state boards and prominent international ones are. List is given in prospectus

In case a foreign board is not in Nios list the a certificate by Indian embassy of that country and association of Indian universities to the effect that the board is equivalent to indian secondary board suffices .
In Kochi,Adarsh  http://adarshrehab.org is an accredited centre for OBE.Choice school has secondary NIOS  and Vigyan valley has secondary,senior secondary,NIOS 4yr IC and Push start programmes.

Facilitated Communication (FC) or Supported Typing is a form of alternative and augmentative communication (AAC) in which people with disabilities and communication impairments express themselves by pointing and  typing.
It often is referred to alternatively as Facilitated Communication Training because the goal is independent typing, nearly independent typing.

Discussion further lead to the prerequisites,prompts ,keyboards,software  and apps that are of use to help our kids attain independent typing.

Keeping the touch screen devices upright helped many kids perform better than when kept horizontally due to poor eye hand co ordination.

The pre requisites for typing included recollecting from memory,being able to understand  'wh' questions ,aspects of theory of mind.Therapists added that providing visual cues for beginners will help them understand  the  expected outcomes from them; greatly reducing the stress levels.Starting with reinforcing items followed by introducing personal narratives. Caution should be on the choices the child have instead of the facilitator deciding things for the child( guiding )

Regarding homeschooling we received only fewer responses so that it should be deduced that the parents definitely chose to send their kids either to a normal school or a special needs school owing to it's advantages.

Typing is a complex process which involves lots of hand eye coordination,  midline crossing, bilateral coordination, visual scanning and tracking, letter recognition, differentiation between capital and small letters, then the entire, executive functioning skill repetoire that include, planning, focus and attention to detail, organising, working memory, initiation, staying on task , auditory and visual processing too.  Working on all these individually also helps develop typing skills

To help with scanning , cover off the keyboard leaving only one row of alphabets exposed at a time. Parents demonstrated how they have adapted the keyboards to suit the child's needs.Typing skills can be initiated by copy typing if the child possess some of the prerequisites like scanning and differentiation of alphabets and keys.

Parents pointed out that vision therapy helps a lot for developing typing skills.Many preferred the use of real keyboards instead of touch keyboards as it provided the proprioceptive input required for the child.It was suggested to try out multiple types and sizes of keyboards. Speed is a pre requisite in data entry, which is a good job opportunity for many of our kids.

Parents were happy with Avaz keyboard and Clevy keyboard.Some pointed out the disadvantages of using a colour keyboard were some kids will stim or get distracted with it.
Typing however is a higher task ,it can be attained by patience and practice.

The discussion was supported by anecdotes, notes,and demonstrations and resources .

http://www.mediafire.com/folder/89sutmub6gn3t/nios_subject_wise

http://www.mediafire.com/folder/e7zzslbg6eih7/nios_main

Active participants

Chitra Paul
Swaminathan Rajan
Vijayashree
Ditty Sheebu
Priti Ajay
Ismet Assenar
Gina
Lakshmi
Shereen Idikulla
Smrithy Rajesh.
Anitha Pradeep

Thank you all

*NIOS - USEFUL LINKS*

http://www.niosadmission.com/nios-requirments/

http://www.nios.ac.in/online-course-material/secondary-courses.aspx

http://www.mediafire.com/folder/89sutmub6gn3t/nios_subject_wise

http://www.mediafire.com/folder/e7zzslbg6eih7/nios_main

http://www.mediafire.com/folder/xpqqh4v1y718h/auditory_processing

*Homeschooling*

https://www.quora.com/Is-homeschooling-legal-in-India

*Typing Help*

https://www.bbc.com/news/10338131?ocid=wsnews.chat-apps.in-app-msg.whatsapp.trial.link1_.auin

https://itunes.apple.com/us/app/interactive-alphabet-abcs/id383967580?mt=8

https://www.englishtype.com/specialASD.php?subMenu=1

http://www.assistiveware.com/product/proloquo2go

https://www.amazon.in/dp/B00A17MNHU/ref=cm_sw_r_wa_awdb_t1_zLMhBbMCB5A9N

https://play.google.com/store/apps/details?id=com.visionobjects.stylusmobile.v3_2_store

https://play.google.com/store/apps/details?id=com.mah.big.keyboard

https://play.google.com/store/apps/details?id=com.bigbuttons

https://play.google.com/store/apps/details?id=com.aitype.android

https://play.google.com/store/apps/details?id=com.google.android.apps.handwriting.ime

https://play.google.com/store/apps/details?id=com.jbak.JbakKeyboard

https://play.google.com/store/apps/details?id=com.appstech.huge

http://www.typingmaster.com

http://www.qwertynomics.ca


#Asd Parents and Therapists Group,Kerala.

Epilepsy and Autism

Autism and Epilepsy

Summarizing whatsapp discussion on ,epilepsy-precautions,medications and connection with Autism.

Dated 13/6/18 -19/6/18

Epilepsy, a brain disorder characterised by recurrent seizures (hypersynchrony of impulses) can begin at any age.The medical diagnosis is based on ,

Medical and family history
Number of episodes
Results of diagnostic tests such as EEG and MRI.

A seizure can temporarily and adversely affect sensory perception ,posture and locomotion,attention,language functions and consciousness.However a seizure doesnot necessarily indicate an epilepsy.When someone is diagnosed with epilepsy;they have an increased risk of future onset of seizures.

The discussion started of with an analysis from the parents side on the benchmarks for identification of a seizure.They observed drooling/excessive salivation before the onset of a seizure.They also noticed involuntary jerking (lasted from sec to min),heavy muscle spasms,rigidity or flaccidity of the body,eyes rolling up,coughing during sleep followed by nausea and jerks,lack of response,loss of consciousness,unusual stare for a long period and so on

Many parents cautioned on the necessity to be alert on swimming pools and suggested a one on one monitoring since there is  a high chance for seizures in water and the situation is quite risky

Diagnosis is usually done by an 8hr long video EEG. Parents raised the effectiveness of sedatives like pedichloryl or similar as it would affect the reading.Some informed that in U.K melatonin induced sleep is preferred as it doesnot affect EEG readings.They also shared the instructions to be followed before getting ready to take an EEG. Dr Gayathri pointed out the disadvantages of taking short EEG in ruling out conditions where epileptiform discharges themselves cause autistic traits
E.g..Landau Kleffner Syndrome.

https://rarediseases.org/rare-diseases/landau-kleffner-syndrome/

Parents and doctors suggested strong links between autism and seizures. Precautions to be practised during a seizure are:-
1.never restrain the patient
2.make sure the airway is not blocked
3.tilt the child so that he is in a lateral position
4.Be calm and composed
5.Make a video for easy diagnosis of the type of seizure

Discussing further on antiepileptic medications many first line and second line drugs specific for each type of seizure is available.Dose titration and addition of drugs might be required,based on seizure control.They are started only after the onset of 2nd seizure.Most medications have some sort of side effects and some doctors prefer to check blood ammonia when on carbamazepine and valproate . Monitoring the drugs is a key factor since multiple drugs can have synergistic effect but at the same time influence each other's metabolism as well. Generally a 2yr seizure free period and the neurologists discretion is the right path towards tapering off medicines.

Instructions to parents

1.On consultation  with a doctor, the parent should always list out the medicines the child is currently on (e.g... antihistamines,antibiotics etc)
2.The prescribed dose of medicine should be given at the right time (Keep a reminder to help ourselves)
3.Never miss a dose

Homeopathy claimed bright light,imbalance in copper and zinc,high fever,emotional outbursts,head injury and asphyxiation as contributing factors for epilepsy.The significance of Thuja,the pillar of sychotic miasm was provided.

Dr Santhosh George Thomas provided an insight into surgical remedies for intractable epilepsy,when multiple medicines in maximum doses fail to control epilepsy.He informed that after a seizure,the patient would experience intense muscle pain after waking up and feel completely exhausted.He contributed photic stimulation and sleeplessness and hormonal variation as triggering factors for epilepsy.He  adviced to be careful with sensory stimulations provided in A/V rooms. Vagal nerve stimulation and ACTH (works partially) was suggested for intractable epilepsy.Patients with inborn errors in metabolism are also likely to have epilepsy.

Ayurveda foresee epilepsy as the structural and fun tional abnormality of brain.Dr Roshni informed that fluctuations in blood glucose,calcium and magnesium levels can too trigger epilepsy.Tiresome travels ,stress,digestive errors are also factors. She informed that atypical febrile seizure is more common in asd kids.She pointed out that hyperpyrexia (high temperature) induced seizure is not a pathological condition.

Dr Gayathri pointed out the relevance of head to toe examination to look for dysmorphism or neurocutaneous markers.She suggested a genetic evaluation  and MRI as many genetic syndromes share risk of autism and seizures. Studies suggested a peak in seizures due to exitatory-inhibitory neurotransmitter imbalances.

Parents and docs examined the use of Vitamin B6,E,Folate,Mg,DMG and progesterone in controlling seizures. Ketogenic diet to an extend controlled recurrence of seizures.
Parents also suggested to avoid eukalyptus essential oil as suggested by MAPS doctor for kids prone to seizures.

Notes were provided on

Catamenial seizures
Supplements and seizures
Reflex epilepsy
Ayurvedic remedies for epilepsy.

Active participants

Dr Gayathri .S
Dr Santhosh George Thomas
Dr Roshni Anirudhan
Sona Raghavan
Preetha Suresh
Gina
Vinitha Dev
Beena Balakrishnan
Prasanthi Vankamamidi
Priya Koundinya

https://www.ncbi.nlm.nih.gov/pubmed/27513702/


Thank you all

(The discussion is in no way conclusive or decisive.Medicines should be given only on prescription from a licensed medical practitioner)

#ASD parents and Therapists Group,Kerala

Ayurveda and Autism

Ayurveda and Autism

(Summary of WhatsApp discussion)

Ayurveda is the natural healing system of India that has it's origins from the Vedic culture.

The discussion provided us with the likelihood on how far ayurveda can help individuals with Autism.The discussion mainly derived knowledge on the bioactive compounds that can be of use to improve cognition,communication,to reduce sensory issues ,hyperactivity and aggression.

Parents discussed on the effectiveness of Curcumin (BCM 95) ,best bioavailabe compound to rebuild the immune system and the use of Virgin coconut oil (high lauric acid)for its anti-inflammatory,antipyretic and analgesic properties. Piperine is said to enhance the bioavailability of most herbs. Luteolin another anti inflammatory found in peppers is said to have Neuro protective function.Parents preferred Ajwain water to reduce bloating.

The potential of probiotics to maintain a healthy gut was much appreciated.But many suggested that a single strain probiotic specific to the child was tolerated well.So finding the right strain was by trial and error method.Many tried natural probiotics like Water kefir or Kombucha ,but observed either the child dint like it or were intolerant.As a prebiotic ,parents were happy to use Apple Cider Vinegar.

Parents agreed on food intolerances with *uzhunnu* and suggested alternatives as *moong dal* Suggestions came in for IgE and IgG testing to find further food intolerances.

Parents pointed out the advantages of using
Sarawathariahtam
Indukanthakashayam
Kalyanaka ghritam
and many more ...for its cognitive enhancing capacities.Doctors and parents implied on the necessity for strict diet restrictions when under ayurvedic treatment.

Some were concerned on the possibility for liver issues or lead toxicity when undergoing ayurvedic treatment ,that should definitely be checked with proposed tests from the physician.

Doctors suggested the use of *Triphala* and to avoid spicy foods to improve gut flora.Honey Gooseberry and "Pazhankanji" were proposed to help improve the gut microbiota. Ash gourd was suggested to improve the gut brain axis.

Dr Roshni Anirudhan found a corelation between the levels of serotonin and ASD kids. According to her there were an increased levels of serotonin in 35% of kids and lower levels in 5%.But she noted that the results were not directly linked with the severity of the disorder.

Herbs like
Bacopa monnieri (Brahmi)
Centella asiatica
(Kudangal)
Glycyrrhiza glabra
(Yashtimadhu/Irattimadhuram)
Convolvulus pluricaulis
(Shankhupushpi)
Acorus calamus
(Vayambu)
helped to increase neuronal plasticity and improved cognitive and behavioural disorders by releasing  BDNF.

To reduce aggression,mood swings ,temper tantrums Ashwagandha ( Withania somnifera) was suggested the best since it did not directly impact the hormonal axis .

The discussion was augmented by notes on Prebiotics and Panchkarma.Many parents came forward to appreciate Ayurvedic  practises to help them not just with Autism but for general health as well.

The discussions were lead by
Dr Roshni Anirudhan
Dr Gideon Paul
Dr Hemalatha N Potti
Sanjay
Devyna Lembard
Priti Vadakkath.

Thank you all.

(The discussion is in no way conclusive or decisive.Medicines should be taken only on prescription from a licenced medical practitioner)

http://medicalkerala.com/roshnianirudhan/kaumarabhrithya/detai1s-doctor/trivandrum/department-of-kaumarabhrithya

https://youtu.be/OPd5P4NLaPc

https://ayurvedicscience.com/articles/ayurvedic-practice-for-assisting-patients-of-autism/

https://doctornishal.com/2016/06/20/regrow-brain-cells/

https://www.ncbi.nlm.nih.gov/pubmed/19789214

https://www.ncbi.nlm.nih.gov/pubmed/19501822

https://www.ncbi.nlm.nih.gov/pubmed/23796876

https://www.ncbi.nlm.nih.gov/m/pubmed/24497737/

https://www.ncbi.nlm.nih.gov/m/pubmed/24330893/

https://lifespa.com/benefits-differences-brahmi-gotu-kola-bacopa/

https://googleweblight.com/i?u=https://ayurvedicscience.com/articles/ayurvedic-practice-for-assisting-patients-of-autism/&hl=en-IN

#Asd parents and Therapists Group,Kerala

Autism and ADHD

Autism and ADHD

Summarizing the whatsapp discussion on ADHD as comorbidity with Asd,- Parents perspective

Dated 20/6/18 to 26/6/16

ADHD characterised by hyperactivity,inattention and impulsivity was the wide sought topic for discussion from the parents.
Discussion started off by sharing problems many parents faced in dealing with their adhd kids.They shared their apprehensions on self talk (cartoon dialogues or ads) and mood swings when left unmonitored and unoccupied.They noticed that adhd medications like methyl phenidate in controlling the core issues with adhd was ineffective after the effect of medicine subsided.Parents pointed out that there was a noticeable increase in aggression and irritation which could be a sign of child reaching tolerance levels.

Many parents doubted if core adhd management practises like swimming and trampoline exercises make them more hyperactive by arousing the brain beyond a level, than making them calm.Parents suggested the necessity to differentiate 'primarily hyperactive' from sensory processing disorders.They suggested that the activities should be age appropriate and time bound considering individual differences and aptitude.

The common adhd medications prescribed by doctors are
Addwise
Adderal
Dexedrine
Ritalin
Modafinil and so on..

Though the 'controlled meds' are taken only on prescription of a licensed medical practitioner ,parents cautioned on its side effects.Some of the side effects included..
_Vocal tics
_Abdominal pain
_Restlessness
_Drowsiness
_Loss of appetite and sleep
_Involuntary muscle movements and so on.

Parents discussed on dealing with the above mentioned side effects especially for a nonverbal autistic child with adhd.It was advised to discontinue the medication on persistence of the aforesaid symptoms.

Long term side effects of Adhd medicines

Many adhd meds were claimed to be neurotoxic in the long run(damages dopaminergic nerve endings).
Though the tolerance level reached can be reversed by taking breaks;the developmental effects on young children are irreversible

Parents criticized on some of the educational institutions demand to medicate the child for receiving services.However it's imperative that no educational or training institute have the right to impose such a demand though the choice to medicate or not is purely with the parent.

ADHD management practises

In addition to trampoline and swimming ..parents suggested therapy ball exercises,bilateral co ordination activities,midline crossing activities,slow swinging and bouncing,yoga,meditation,reflex integration and MORO exercises to be integrated in an ADHD's life. But some parents concerned that physical activities have no positive role in controlling adhd symptoms.

The fine line distinguishing being hyperactive and having spd remained unanswered since the symptoms overlapped to a great extend.Hence many parents advice was to move forward focusing on the remedies for specific symptoms.
Parents analysed that ADHD is overdiagnosed and be careful with the implications of labelling.(as L.D,ADHD,OCD...) Apprehension was mostly on the functional impairments in self esteem,academic/job/parenting difficulties,poor peer relations etc when they reached adulthood.

According to homeopathy ADHD's pathology is related to lungs.They are more prone to lung infections.The homeo remedies for Adhd are:-
Tuberculinum
Carcinocin
Sepia
Phosphorus
Sulphur
Calcarea phosphoricum
Camomila
Arsenic album
Tarentula hispanica
Apis
Reference :-Materia Medica

Parents claimed that comparatively the side effects with homeo medications was less ,but at the same time quite difficult to find a competent homeopath.

Many suggested the effectiveness of power point presentations as a teaching strategy for kids with adhd,autism and apraxia.Its important to identify the learner as visual,auditory,kinesthetic and so on for effective learning.

Discussion revealed that those with adhd tends to be obese since they can't control their impulse to resist overeating.Contributing factors included increased corticoids ,ghrelin,leptin resistance and vagus nerve stimulation issues.

As parents,though we need to deal with a lot of issues with adhd most parents dint forget to focus on the positive traits of adhd as well.

Discussion was augmented by notes on

School accomodations for adhd
Behaviour manageme t schedule for adhd
Tackling adhd and spd at home
CBT
www.vitallinks.com

*Suggested experts
Dr Sheshadri ,Nimhans
Dr Rajan Sankaran,Homeopathy

Active participants

Sona Raghavan
Beena Balakrishnan
Jayalakshmi
Geena C.S
Rifana rasheed
Chitra Paul
Swaminathan Rajan
Devyna Lembard
Priya Koundinya
Litty George
Zahi-r- Ibrahim
Sanjay
Simi Babu
Lakshmi Jayakrishnan
Renu. S

Thank you all for participating.

(The discussion is in no way conclusive or decisive.Medicines should be given only on prescription from a licenced medical practitioner)

#Asd Parents and Therapists Group,Kerala

AUTISM AND DYSPRAXIA

Summarizing whatsapp discussion on Dyspraxia and Autism

Dated 27/6/18 to 3/7/18

Dyspraxia is a common disorder affecting fine/gross motor co ordination in children and adults that affects participation and functioning of everyday life skills in education, work and employment.

The discussion started of with infographs on the subject and sharing blogs written by people affected with the same.

Dyspraxia can be easily *recognised by
lack of driving skills
Illegible handwriting
Flapping of hands and feet on running
Difficulties with physical coordination and motor skills
Difficulty with planning a set of instruction
Struggle with balance and posture
Immature behaviour though with above average intelligence
and so on...

Dyspraxia is used as *synonym to developmental coordination disorder (DCD),Motor learning difficulty,Apraxia of speech etc

*Causes for dyspraxia included
Premature birth with low birth weight
Family history with DVD
Alcohol or substance abuse during pregnancy etc
Often found as a comorbidity with autism

Dyspraxia can be *categorised as:-

-Ideomotor- difficulty with single step task
E.g. waving hands
-Ideational -difficulty with sequencing e.g..brushing teeth
- Oro Motor _verbal apraxia characterised by slurred speech
-Constructional - difficulty copying or using building blocks

Therapists informed that *identification of subjects is when singing or counting is unaffected but volitional speech being affected.Kids will have inability to imitate sounds or movements.Verbal apraxia can be diagnosed in the absence of muscle weakness ,but at the same time can be found co morbid with muscle weakness as well (dysarthria).Characteristics of verbal dyspraxia was listed out by Sherren Idiculla SLP .She also added that dyspraxia comorbid with autism is very difficult to diagnose because it's difficult to differentiate if the child has no intent to communicate or imitate or/if it's difficult to imitate due to motor planning issues.

Rofina Babin SLP very well *explained and demonstrated* with ppt's on speech sound accuracy hierarchy as...
1.Imitating actions
2.Imitating functional sounds
3 using sound combinations of vowels (V) and consonants(C)
4.Repeating strings of CV,VC
5.Applying mastered sounds in New structures or adding structures
6.Develop sound accuracy
7.Developing sound accuracy in connected speech
8.Using complete sentences.

It was suggested to add a *tactile component(Ref talk tools) to help brain understand how to create an oromotor movement.

Marwa SLP too suggested the sequences to be followed for effective speech as

Nonverbal oro motor movements
|
Verbal oral movements
|
Whispering to voicing labial sounds
|
Visual sounds
|
Bisyllabic simple words.

Therapists differentiated oral dyspraxia from Verbal dyspraxia and dint forget to stress on the relevance for screening autism and apraxia.On an estimate 65%of children with Autism are affected with apraxia.On the contrary apraxia without autism occurs in 1/2 per 1000 individuals. Studies showed CAS affected more boys than girls(Autism Speaks)

*Interventions included
OT-perceptual motor training
Speech therapy-promote exercises
Physical therapy
Hippotherapy (Refer notes)

*Classroom help needed are...

Adaptive equipment for writing
Preferential seating
1:1 aide
Alternate means to demonstrate answers
Assistive technology
Allotment of Extra time
Written task directions etc

Maya Suresh very well explained the 5 step approach to deal with kids with dyspraxia as
Readying,Imaging,Focusing,Executing and Evaluating .
Notes were provided on typical milestones to recognise dyspraxia

https://aapos.org/terms/conditions/138

Though we dint get enough inputs on whether an individual will grow out of dyspraxia..hopefully all the interventions and techniques mentioned by the therapists must definitely play a positive impact on the individuals.

The discussion was supported by
Power point presentations
Notes
Workbooks
Books
Links
Side notes on selective mutism and aphasia
Venn diagrams
Articulation cards
DIY Kauffman cards .....

*Active participants

Shereen Idikulla,SLP
Rofina Babin,SLP
Nidhin,SLP
Marwa,SLP
Zahi-r-Ibrahim,Ophthalmologist
Chitra Paul,Parent/Spokesperson
Renu Singh,Educator/Parent
Gina Vijayakumar,Parent/Spokesperson
Maya Suresh ,Parent/Educator

*Sites/apps for speech issues

https://play.google.com/store/apps/details?id=com.tactustherapy.apraxiatherapy.lite

https://play.google.com/store/apps/details?id=com.speechtx.jennifer.flashcards_s

https://play.google.com/store/apps/details?id=com.imagiration.mita

https://play.google.com/store/apps/details?id=com.bhavajeet.charan.myspeechtherapy

https://tactustherapy.com/

https://www.readandspell.com/how-to-help-a-child-with-dyspraxia-in-the-classroom

https://itunes.apple.com/us/app/speech-therapy-for-apraxia-1/id512647583?mt=8

https://www.speechandlanguagekids.com/articulation-cards-cv-vc-cvc-cvcv/

https://jakes-journey-apraxia.com/2012/05/30/diy-apraxia-flash-cards/

https://www.speechandlanguagekids.com/4-components-speech-therapy-children-childhood-apraxia-speech/

http://testyyettrying.blogspot.com/2011/06/apraxia-therapy-materials-kaufman.html?m=1

https://www.home-speech-home.com/word-vault-app.html

https://www.speechbuddy.com/blog/speech-disorders/the-best-speech-therapy-resources-for-the-treatment-of-childhood-apraxia-of-speech/

https://www.understood.org/en/learning-attention-issues/child-learning-disabilities/dyspraxia/understanding-dyspraxia

https://www.aphasia.org/aphasia-definitions/

https://www.merakilane.com/speech-therapy-activities-14-articulation-exercises-for-kids/

https://www.arktherapeutic.com/blog/10-tips-for-kids-who-need-to-chew-an-oral-sensory-diet/

https://aapos.org/terms/conditions/138


Thank you all

*#Asd Parents and Therapists Group,Kerala.
SHARE

Autism and Sleep Disorders

Summarizing whatsapp discussion on Sleep disorders in Asd population - Causes,Lifestyle modifications and Treatments

Dated 15/7/18 to 21/7/18

Sleep disorder is the primary red flag parents of an Asd child comes across.Current data shows that 40-80% of children within the Asd world have sleep disorders.Since disorders impact mood,cognition and behaviour (hyperactivity,aggression) not just of the child but the whole family,the topic was dealt with much enthusiasm with participation from medical professionals and parents as well.

We express our sincere gratitude to
Dr Rafeeqali ,ENT
Dr Gideon Paul
Dr Roshni Anirudhan
Dr Hemalatha N Potti
Dr Gayathri .S
for providing us valuable informations on examining,evaluating and managing sleep disorders.

The *major symptoms a parent might come across are
*Difficulty to initiate sleep
*Inconsistent sleep or poor sleep quality
*Waking early and waking frequently
*Resistance to go to sleep
*Easily wake up on presence of feeble sound or presence of light

*Factors affecting sleep

*Low levels of melatonin
*Yeast and parasite infection
*Seizures
*Sensory issues (increase cortisol and decrease melatonin)
*Gut issues
*Vit D deficiency (low in mitochondrial disorders ,genetic mutations VDR taq,VDR basm. )
*Lower Magnesium levels which results in poor VitD absorption.
*Metabolic errors
*Dr.Gideon Paul provided enough journals to give an insight into Wireless radiation as a culprit for sleep issues
*Vitamin and mineral imbalance
*Hormonal changes in puberty
*Sleep apnoea characterised by snoring,mouth breathing,paused breath,mouth dryness


Dr. Rafeeqali pointed out the significance and need for a good medical history and examination for a proper evaluation (polysonogram) and further sleep management.Adenoid features (open mouth,high arched palate..) must be evaluated for *adenoiditis.
Nasal polyps,allergies,GERD ,laryngomalacia contribute to *apnoea
He further adviced to focus on evaluating sleep related disorders like irritable leg syndrome,nightmares,night terrors ,sleep walking as well.Pharmacological interventions was suggested to be a last option since it can cause dependance,agitation,liver and kidney functions.Melatonin was adviced to be a safer choice.

Remedies/interventions for sleep disorders as suggested by medical practitioners and parents

*Most parents agreed on the need for physical exhaustion for a good night sleep
*Life style modifications included Aromatherapy as sprays,lotions,baths thereby reducing cortisol levels (lavender,vanilla,cedar wood,vetiver,sandalwood),low lighting,calm music ,chamomile tea,following strict gfcfsf diet, and following a sleep hygiene(switch off Wi-Fi,keeping e devices in airplane mode,warm bath,healthy dinner etc)

*Dr Roshni Anirudhan and
*Dr Hemalatha N Potti
adviced on how ayurveda can help intervene sleep disorders.
Ksheerabala oil
Ashwagandharista
Milk with nutmeg(only occassionally)
Himasagara tailam
Check heavy to digest proteins(cashew,groundnut,)
2hrs of strenuous exercise
Thalam
Shirodhara
Ksheeradhara
Takradhara
Abhyanga ;were found to be effective for correcting sleep disorders in Asd kids.Parents provided positive remarks on ayurveda for sleep disorders.However some parents were also concerned and doubted if ayurvedic medicines are high in oxalates. Dr.Roshni cautioned on using melatonin as it manipulates the hormonal axis.

*Homeopathic remedies were very well explained by Mr Karthik Ramaswami.Yhe significance of
Bach flower remedies
Rescue remedies
White Chestnut
Yellow Lady's slipper ( _Cypripedium pubiscens_)
Bushmaster/Lachesis
Opium
were discussed with the help of *materia medica
Many parents spoke in favour of homeopathy as a remedy for sleep disorders while some parents pointed out it dint work for autism.

*Dr Gayathri.S revealed her positive  experiences dealing with sleep disorders with high doses of  biomedical supplements :-
Vitamin B6
Magnesium (sunflower and pumpkin seeds are natural sources)
Folate
Vitamin C
Co factors for enzyme synthesis for serotonin and so on.

*Sensory Integration Therapy elicits the production of neurochemicals to counter balance one another to support regulation and arousal of sleep.Deep pressure therapy increased serotonin levels and thereby melatonin levels.Proprioceptive activities like weighted blankets,sleep bags,body pillows and swaddling for babies were suggested by parents.They also suggested to satisfy the sensory needs by providing a decluttered calm,neutral tone,bed room with enough blinds to prevent unnecessary entry of light.

*Use of melatonin/precursors/supplements was suggested to be the safest option to induce sleep.Though many parents admitted it helped to induce sleep, some reported it failed to sustain sleep.Some even noticed anxiety and irritation when on melatonin.Since melatonin the natural hormone is produced only in dark,reducing exposure to all lights during sleep time will help to produce enough of it.

Though some parents still struggle with sleep disorders and routines; as age progresses most kids will attain a healthy sleep routine .It's appreciable to note that though many parents and kids were sleep deprived even during the time of discussion,each parent showed much curiosity to learn on sleep disorders.Hope the discussion helps a few...

Thank you all

Participants
Sophy
Gina
Jayalakshmi
Catherine Figarado
Priti Ajay
Deepa PG
Sanjay
Prasanthi Vankamamidi
Chitra Paul
Chitra Chandran
Chitra Subramanian
Asha Sanjeev
Jasmit
Sona Raghavan
Renu S
Priya Koundinya
Mahalakshmi Anoop

https://www.autismparentingmagazine.com/helping-your-child-with-autism-sleep-an-overview-of-sleep-hygiene-and-behavioral-strategies/

https://www.webmd.com/brain/autism/helping-your-child-with-autism-get-a-good-nights-sleep

https://www.andnextcomesl.com/2016/03/diy-weighted-blanket-tutorials.html

https://www.thechaosandtheclutter.com/archives/sleep-solutions-children-sensory-needs

https://chopra.com/articles/7-ayurvedic-bedtime-rituals-to-help-your-child-sleep

https://www.collective-evolution.com/2018/07/05/more-research-shows-what-wireless-other-emf-radiation-is-doing-to-our-brain-overall-health/

https://www.nontoxicliving.tips/blog/8-tips-to-prevent-emf-sleep-disturbance

https://www.henriettes-herb.com/eclectic/cook/CYPRIPEDIUM_PUBESCENS.htm

https://www.dailypioneer.com/sunday-edition/agenda/trend/treat-sleep-apnea-with-homeopathy.html

https://www.ncbi.nlm.nih.gov/m/pubmed/16638513/

http://www.homeoint.org/books/boericmm/c/cham.htm

https://www.autism.org.uk/about/health/sleep.aspx?utm_source=The%20National%20Autistic%20Society&utm_medium=email&utm_campaign=9674552_18.07.2018%20-%20July%20monthly%20enewsletter%20active&dm_i=YA3,5RCXK,SAKD4B,MG9EH,1#


#Asd parents and Therapists Group,Kerala

Residential care and Legal guardianship

Summarising Whatsapp discussion on residential care and legal guardianship

Dated 4/7/18 to 14/718

 One of the most relevant topic for discussion owing to lack of awareness and implementation is on future support systems for our kids.We as parents have empowered ourselves from the whining "what after me " scenario to resorting practical solutions for the issues.Eminents like Swaminathan Rajan, Akila Vaidyanathan,Dr A.K Kundra,Mrs Saswati Singh provided us with vital informations on the subject.They were kind hearted enough to share their previous discussions and fool proof project informations for the welfare of our kids.We as a group express our sincere gratitude to all of you and all the participants as well

The discussion started off on analysing whether marriage is a viable option for life long support.While many parents chose to respond positively to marriage ,a few others expressed their concerns and necessity for the society to set an example by coming forward to marry those in the spectrum.Parents exemplified the successful married life of autistic individuals with support systems from a "trust" to manage finances ,legal affairs and so on.At the same time some parents raised their concerns on the neurotypical sibling sacrificing their life to take care of the special needs sibling.They pointed out that the Nt sibling undergoes immense  pressure to take care of the SN sibling.The discussion ended with a conclusion that marriage is a personal choice based on independency,emotional maturity and interpersonal skills..

Dr A.K Kundra suggested Residential home for the future well being of these kids  as they would need a little assistance in their lives.He advocated for setting up more reside trial homes for the support and care of these individuals.
Mr Sanjaya Ganesh came up with the idea of "microtrusts" as an option for future care with local tie ups depending on localities,requirement on occasional supports from therapists and vocational experts

A few parents were extremely happy to inform the successful living of spectrum individuals who were employed ,shared a home ,lived independently and had functional social skills.

Though residential homes are an option,parents were apprehensive if the projects built were autism friendly enough with respect to the infrastructure and vocational facilities available.
Mrs Akila Vaidyanathan provided the link to  a fool proof project which can be considered as a template to future projects in India

http://www.covaicare.com/wp-content/uploads/2018/03/CovaiCare-Master-Document-for-Persons-with-Disabilities.pdf

Legal Guardianship was dealt and discussed to it's core since most parents were unaware on its details Legal guardians take all decisions on behalf of the person and property of the Sn ward after he acquires 18yrs.Though till 18yrs parents are the natural guardians,they cease to be one once the child is 18yrs.If not applied for legal guardianship the parents can no longer take legal decisions on the child or legally represent the child.

Application form for legal guardianship is available online and Mrs Jasmit very well explained the requirements necessary for applying online.

Raksha,Mattanchery is the local level committe in Ernakulam Dist for the same.(nodal agencies for other dists too were provided).LLC meets once in 3 months and consider appointing or removing the guardian according to National Trust Acts.
(REF..Who can apply for appointment of LG)

The discussion was supported by word documents on Assisted living and Guardianship shared by Swami Sir


Parents doubted if legal guardianship was considered and implemented with enough importance despite the laws and provisions provided by national trust.Many parents liked the idea and emphasized on the need for a trust  as decisions concerning the individuals will be taken on consensus by a group of persons rather than an autocratic decision by the individual.
Mrs Anitha Pradeep detailed on the procedures for providing application for LG

Though not mandatory ,Since National trust act 1999 had made provisions for the same,it is always advisable to apply for LG
(REF..Who may apply for LG)

Mahadevan Sir of Adarsh Charitable Trust provided information on promoting special village for our community up to 90 families.Priya Koundinya participated in the discussion by explaining her experiences on how LG can be established in U.K.

The discussion ended by explaining the conditions and procedures necessary to remove legal guardianship if necessary..

We analyse that this was one of the most need of the hour and  productive discussions we had..

https://cis-india.org/accessibility/blog/central-government-schemes

http://thenationaltrust.gov.in/auth/llc_pwd.php

http://thenationaltrust.gov.in/content/innerpage/schemes.php

http://vikaspedia.in/social-welfare/differently-abled-welfare/schemes-programmes/legal-guardianship

http://www.thenationaltrust.in

http://www.maxshome.org

*Participants
Gina Vijayakumar
Padmini Hariharan
Prasanthi Vankamamidi
Beena Balakrishnan
Zahi-r-Ibrahim
Prasanth Gangadharan,Learning Alternatives
Vidula
Chitra Subramanian
Anitha Pradeep

Thank you all

#Asd parents and Therapists group,Kerala.