We are from Hyderabad and I'm going to explain our journey so far (2 years) and progress of our son who was tagged as autistic at 2.2 years.
Try to read completely as you might come across all the hurdles which we went through.
Initial Symptoms at 2 years:
a. Head Banging
b. Destructive (Used to bite when angry)
c. Temper Tantrums
d. No Speech
e. Hand Flapping
f. Hyper Active
g. Sleepless ness
h. Bedwetting(Not a serious problem at that age)
i. Isolated (Not mingling with any other kids or his elder brother)
ATEC Score in 2017-May: 48
Current Age: 4.5
Symptoms Now :
a. Head Banging - Not any more
b. Destructive (Used to bite when angry) - Cured, he will say "I'm Angry" when he is angry
c. Temper Tantrums - Not any more
d. No Speech - Big Improvement he speaks a lot, now started singing too with ads in TV, echoes all ads and songs from phone and tv.
e. Hand Flapping - No more
f. Hyper Active-Still a problem (Jumping and Running here and there)
g. Sitting Tolerance: Still a problem
g. Sleepless ness - Cured
h. Bedwetting - Minor problem now only wetting, potty he says and waits till we take to the washroom.
i. Isolated - No More ..he plays with all kids and loves to play with his brother.
ATEC Score in 2019-May : 14
Initial Analysis done at Hyderabad Rainbow Hospital.
The doctor mentioned as "Autistic ??" but asked us to wait and see as he was just 1.8 years old.
We were completely trashed and I was working on-site back then. I came back immediately leaving the job.
I was not in favor of "wait and see " as the initial period is considered as precious and saw this as a challenging project with very specific goals to accomplish
I quit the job for 3 months and started observing below patterns from his routine for a few days and made a note on every aspect.
a. Area of intrest (Games, Water, Cars, Wheels(Rotating))
b. Hyper Active Scenarios (His favorite rhymes, Games from Mobile Or any specific case where he gets hyper)
c. Food Habits (Amount of Sugar, Gluten in regular food)
d. Destructive Behaviours (when and why ?? Was really worried about headbanging ..it was a real pain to see banging his head to a nearby door or wall )
e. Speech patterns and Expressions (how was he trying to communicate >> he used to cry when he wants something)
f. Why Alone and Isolated ??
Family members started many pooja's and I don't want to stop them by doing so.
As a first step went to some famous Neurologist in Hyderabad and asked him to verify the brain development and any seizures ...Doc did an MRI and found its perfectly fine and no known issues --Doctor Suspected him to be Autistic and recommended Psyhriatist
Without any late we started searching for therapy centers,
please note that these are our personal experiences which may differ with others
We stay at Miyapur in Hyderabad and started exploring all the available options.
Diet Tried: GFCF Diet - Kept feeding him dishes made of coconut oil and Almond Milk instead of Normal milk for 6 months
Result: Not a very major gain with respect to behavior.
Stopped Sugars: Tantrums got reduced and so is hyper ness.
Therapy Centers Tried :
Ruled Out: Praveen Kumar Saxena -- BioMedical Treatment (not comfortable with mixed reviews)
As a first step going to
1. SWEEKAR :
a. Renowned Name
b. Big Campus,
c. All equipment is available for behavior, OT and speech therapies.
a. The analysis is done by students who are pursuing their degree
b. Hanumantha Rao (Doctor) is old and Institute is out of his control mostly
c. He will prescribe very heavy drugs which make children to sleep for more than 10
hours (Sleeplessness is gone but my kid got addicted to that drug without which he was not able to sleep)
d. Medicines were very costly (>5000 per month)e. The doctor used to shuffle the same medicines whenever we pay a visit, enquired a few other parents whom we met there and found very bad results.
d. Therapies were taken by some random staff .e. MONEY minded ..purely commercial.
Suggestion: AVOID ..if you are nearby to sweekar only consider taking Occupational Therapy.
We stopped Sweekar after 3 months as there is no much improvement and mainly because of heavy medications.
2. SPARSH: Nizampet
Center was small and we have to drop the kid at 9 AM in the morning and pick up at 12.30, parents not allowed inside
No improvement for 3 months and every day they used to complain that he is sleepy and not very active.
They have kept a maid to pamper him and to feed him but not for activities
This center seems to be good for Highly autistic kids above 7 or 8 years and who are physically challenged
We went there for 4 months and stopped as there was not much progress with respect to behavior.
Parallely we stopped Allopathy and started Homeopathy
3. Rainbow Speech Center - Nizampet: Speech Therapy
Trainers are young and follow a regular routine, found useful as it is near to our home.
4. Varun Training Center '" Miyapur
Parent Training was helpful
Very money minded and no respect given to parents
From all experiences we understood one thing ...we have to slip into his boots to understand him
Thereafter we started training him on the boards, cards but MAINLY started interacting with him more and more rather than leaving (believing) at some therapy center.
a. Area of interest (Games, Water, Cars, Wheels(Rotating)) --
Started installing puzzle games and memory games in phones I used to play in mobile initially along with him and praised him whenever he solved any puzzle and he started reaching out to me often whenever he wants to be praised. Ex: He started to look at me after jumping ..if that's not a positive sign I used to stay calm, he used to shout, scream but I would remain unattended.
When he does any nice thing like seeing at us when we called by name(even once in 10 times) we all used to praise him loudly clapping ..this increased his concentration and he started listening to us every time.
Result: Now he starts turning whenever someone calls his name , and HE KNOWS HIS NAME .
He Stopped Jumping almost as no one praises and he jumps only when he eats choclates or icecreams which is by sugars.
Improvement: He solves puzzles faster than anyone of us .." fastest fingers"
b. Hyper Active Scenarios (His favorite rhymes, Games from Mobile Or any specific case where he gets )
Removed rhymes app and added a lock to youtube .. Ex: when he comes asking about youtube we used to open only at a specific time(during Lunch/Dinner) which made him wait till we give it.
Started giving him his Cartoon books, a story collection and made him sit in a chair for more than 1 or 2 hours daily,
Result: His Patience increased, he would wait till we give the phone or he eats slowly chewing as we will take the phone back if he completes soon.
He even started understanding stories (Still a long way to go ) .. opens and sees the cartoons, animals and starts pretending like them
c. Food Habits (Amount of Sugar, Gluten in regular food) We stopped giving him candy and biscuits --> Yes Sugars have to be stopped. d. Destructive Behaviours (when and why ?? Was really worried about headbanging ..it was a real pain to see banging his head to a nearby door or wall )
Installed Posters to all walls (Posters with Cars, Animations and we kept watching him), Result: Adding posters stopped headbanging as he used to see before he hit the wall. Now the symptom is totally gone, we do believe Homeopathy and Age is also a factor here
e. Speech patterns and Expressions : This was the toughest one and it started when we started interacting with him often and insited him to ask.
Ex : When he signs asking for any toy, we signed back him to speak ..for this both me and my wife used to act pretending like him Before him, my wife used to sign asking for toy and I used to sign back to her to shout and then she speaks ..after some days he started following it and started asking for things.
We followed this for many approaches even for feelings ...
Ex: I used to act as if I was beating his mom and she pretends to be crying ... initially, he used to stare and I asked our elder son to console mom when she was crying ... we made him observe and practice this multiple times Result: Now whoever cries he comes, hugs and kisses them ..people keep saying he is the most caring among everyone.
Same for showing Angry: I used to shout loudly(Intentional) when he did any naughty thing and His mom used to cuddle him showing me as "Daddy is Angry now" and used to say sorry and now he says "I'm Angry" when his mom doesn't give the phone:-).
There were many such scenarios which we created ...not sure if the approach is correct but wanted him to include in every activity we do.
Relatives and Social Engagement:
This was the bigger benefit of staying in India, he loves his Grand Parents and wanted to be with them all the time.
He even recognizes all siblings from relatives, other kids from society but playing and mingling with them is completely on his mood.
1. Some parents stopped sending kids to our home : we went to multiple parks making him play with whoever is available ..this made him be active with his playgroup.
2. Positive Advice: Welcome with a smile and look for any improvement.
3. Negative advice: Ignore and move ahead.
4. Outing and Functions: Used to take to all functions even though people laughed at him/us, our intention was to get him mingled with group.
Yes, there were scenarios where I slapped him out of frustation, anger and cried later..but HOPE was never lost.
Still a lot to go ..he is not fully forming sentences, not able to follow commands or understand the scenario as a whole but I'm sure one day he will.
Would like to Thank God for giving him and making us more creative and mainly love cherished in our family ....we were more together
Suggestion needed from people staying Onsite:
Now I got an offer to move to the US (NJ) and confused to shift as it is completely new country. moreover, I'm not used to driving and we have another kid(typical) to handle
We are worried if this growth slows down as we were able to see a positive sign every month in his development. I dont want to re-pent myself due to relocation
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