Positive progress in coming out of Spectrum.

29 replies, Page 1

ghk888 2019-09-13 02:37:02

 

Dear parents,

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 :

Positives :

a. Renowned Name

b. Big Campus,

c. All equipment is available for behavior, OT and speech therapies.

Negatives :

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.

Humiliations :

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

Please provide your valued feedback...



Suja22 2019-09-16 21:38:30

 

Hi ghk88......u people are great parents and ur efforts surely pay you .my daughter is 22months old and diagnosed autistic. Your experience really helps us.thanks for posting.
 

killautism 2019-09-17 03:11:52

 

Hello  ghk888,


Great informative post.  Whatever method you in-corporated by appreciating him for good thing is one the concept of Applied behavioural analysis.  Doing that along your Job is great thing.

Am father of 19-month-old kid diagnosed with Autism. I stay in  Denver USA.  previously I stayed in NJ for 3 months.  The best thing about the USA is there is a lot of awareness about Autism.  Government invests money to help families. Currently an occupation therapist, speech therapist come to our home for one hour per week and try to help my kid for free.  You can always put him for ABA therapy in therapy centres. There will not be fake people in therapy centres. only Board certified people will work in those centres because health insurance will be involved. but many places because of less availability these therapy centres will have a waiting list.

If you are not interested to drive, life in the US is hell. I would say if you don't have a car you are like handicapped. Uber can help if you just use it for office commute but more than that it would become expensive.

the other social benefits you get in India like relatives, grandparents will be huge missing. NJ is a winter state and kids will not be able to play outside for 5 months of a year.

If you need more inputs feel free to connect with me on whattsup @ +1 856-313-5226





 

ghk888 2019-09-17 21:16:51

 

Thank for the information..will reach out to you over Whatsapp.
 


ghk888 2019-09-17 21:34:24

 

@Suja22, Your kid can definitely come out of spectrum, don't lose hope and make them involved in all activities you do...all the best and please feel free to IM me for any support
 

ghk888 2019-12-19 22:27:35

 

To all parents, 

Another update !! 

From Past few month's we saw significant progress in our son's behaviour might be  because of school, continuous intervention and blessings 

He is able to write alphabets in school , matching with alphabets,letters , counting till 100 ,singing songs and reading poems 
and up above all he himself bringing the books to do homework and not getting up till done ...such a drastic change

This was never expected 2 years before when we first identified, Still a Lot to go...

I'm sure all of us would be able to get out of it with some extra efforts , "Keep Trying " and All the very best
 

bhavya1 2019-12-19 22:34:58

 

Nice..very informative...any tips on how to control hyperactivity and running?
 

ghk888 2019-12-20 00:09:19

 

@Bhavya1 : 

We still have this problem till date and trying all ways to bring it down ..but it got reduced compared to initial days , 

Steps we followed : 
Reduced Sugars 
a. Identify what makes him hyper ..like his favourite song or a rhyme or game in phone 
b. Delete the song or rhyme and don't let him install again ..we added a lock to youtube and playstore from mobile.
c. Made him engaged in books by storytelling with actions
d. Joined him in a small school nearby and told them to make him seated for more than 2-3 hours a day at least 




 


bhavya1 2019-12-20 10:57:16

 

Thanks..are you still in Hyderabad or moved to US ?
 

ghk888 2019-12-21 01:57:51

 

I came alone to the US now and getting things settled up, family will join me in March 2020
 

bhavya1 2019-12-21 06:53:31

 

Ok have you used any medication .if yes .what's the purpose of it..and have you seen any positive results for the usage ..can you share the doctor name and medicines prescribed ?
 

ghk888 2019-12-27 01:15:38

 

@bhavya :
we followed Homeopathy but there is no medicine name given as such, doctor name is Dr. K.G.K.Sastry from Nallakuntla Hyderabad,

Let me know if  there is any alternate which we can try to reduce hyper activeness.
 

987cd 2019-12-27 10:13:29

 

Hi gk 888 Your information is very valuable, I think my son also have some symptoms of autism we didn't conformed with doctor till now ,he is 2 years 4 months old. Every one considered him as a normal kid but I suspect him due his some activities When he is 1 year hand flapping and toe walking but not now He is speaking but language is not understandable. He respond to his name, Eye contact is good Some times he understands our commands some times not ,he interested to see rhymes in TV and phone .he is not interested to play with his age group but play with his sister ( 6 years),big issue is speech .I am a working women please give me some suggestions
 

987cd 2019-12-27 10:16:21

 

Is speech therapy useful to him, in which center ur kid took therapy,we are staying in kphb.please suggest good center for speech therapy as per ur experience
 

ghk888 2019-12-27 14:08:54

 

I don't think your son falls under autism as he is responding to his name , there is Good eye contact and speech is also there ..some children will get speech lately, we personally saw kids who got their speech at 4 years and they are normal too ..if there are other behavioural symptoms apart from speech that should be a point to worry but now I would say to get him engaged more with other kids in parks or public gatherings or join him in playschool...you will see the difference once they are into play school..if you still want to join him to speech there is Priyanka speech center in nizampet where we went for few months and once after he started speaking we stopped sending to speech therapy as most of the words are grasped by following videos or by communicating with us ...
 

987cd 2019-12-27 17:05:29

 

Thank you for your reply and suggestions today IAM asking his school teacher about him she also said as he is normal,he respond to his name in school also but not sitting in more time in one place,the is talking but not understanding.
 

Makkan70 2019-12-28 06:22:42

 

Thank You for your patience in providing the detail report, appreciate your support for other parents, happy to hear your kid is doing well, God bless.. 

Best Regards.
 

ghk888 2019-12-31 01:35:54

 

@987d: 
To improve sitting tolerance for your little one , please make sure to engage him in any of below activities
a. Animal puzzles 
b. Beeds with wires (it makes at least 30mn to sit in a single place)
c. Use Start/Stop technique in playing his favourite rhymes , only play the video when he sits.
d. No kid in pre school will sit steadily at one place ( your one might be more active) but things will fall in your place eventually.
e. Even If the speech is not clear at this age , if he is able to express his feelings and needs in a meaningful pattern (blabbering is still ok) there is no need of  speech classes.

 

987cd 2019-12-31 11:05:44

 

Thank you ghk888, I will definitely try what you are suggested , one more concern with him is he recognizes all of us(me, his dad and grand parents) but he called everyone with either tatha or Amma or nanna , some times he called me nanna , some times he called his father as Amma, every time I corrected him but he didn't not understand. Please give me some suggestions about this. Thanks in advance
 

ghk888 2020-01-06 08:02:49

 

Hi 987cd, in recognizing parents wrongly why can't you try by playing game of identification and cheer him up when he makes a right pointing , you can keep correcting him initially and over a period of time I'm sure he will pronounce correctly .
 


newbeginning 2020-01-06 19:58:33

 

@ghk888 Are you in NJ now?
 

ghk888 2020-01-07 04:27:00

 

Yes im in NJ now.
 

SG2225 2020-01-07 20:34:57

 

Hello, 

Is there any ABA therapy good in hyd ? How does this work in USA also ? is there any way I can talk to you if thats ok ?
 

newbeginning 2020-01-07 22:09:46

 

@ghk88 that's great.  where in NJ? I am in South Brunswick. May be we can meet some day.
 

ghk888 2020-01-07 22:49:31

 

Hi I'm located in Parsippany , my family would be joining me in March 2020 , surely we can meet
 

SG2225 2020-01-08 01:29:07

 

Hello, 

can i call anyone of you pls ? I am in kansas
 

ghk888 2020-01-08 03:01:33

 

Hi please pm me ,I'll share my number and we can discuss further
 

987cd 2020-01-12 18:30:07

 

Thanks ghk888,I will definitely try what ur suggested.
 

NaveenBalanagu 2021-03-15 06:37:10

 

Hi ghk88

Thanks for the detailed post and you definitely made a great progress with your kid. I have 2.9 years son having Autism symptoms and waiting for evaluation (Chicago, IL).

Looks like you have used Homeopathy. I would like to get some information from you. Can I contact you. Here is my number +15857293578
 

Navya6689 2021-04-28 15:16:50

 

Very well explained.
 

 

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