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Autism : Return to India Vs stay in the USA

111 replies, Page 3

qass 2017-03-02 00:07:54

 

I strongly recommend you do. Just like you, other than seeing therapists, the only activity we do with kids is play in the backyard playground or nearby playground, which we can do all year round here in CA and tats very important to us. 
 

Kachu29 2017-03-16 12:33:00

 

hi, I am a mother of a 11 year old daughter who has been diagnosed with ASD, in US only. We moved from US six months back and the only advice I can give you is PLEASE PLEASE DON'T COME BACK. I can tell you how difficult is this in india when you look for facilities for your special needs kids. I live in a capital city and then also having a hard time. so please stay there for your daughter's better future even if you have to make few compromises. thanks
 

 Former member 2017-04-08 19:49:21

 

Hello Thepinkdad, I have sent you an invite...read your post and wanted to know more as we are considering to move to US...am currently in India and our son will be ten soon...any guidance would help...
 

Mouri 2017-04-09 09:18:35

 

Hi Can anyone give me a lead how to contact Thepinkdad...I've already sent him a personal message here... it's bit urgent...regards.
 

Mouri 2017-04-09 09:34:17

 

Hi I'm new in Parentree. I've a 10 yrs old son with mild autism. He is out of therapies and goes to a mainstream school without any support. But he needs lots of individual instructions in a group for his attention. His language and academic skills are almost age appropriate. Though he doesn't initiate a conversation by his own or initiate a friendship but answers when questioned ask or ask questions in his interests and plays with friends maintaining all the rules with a little adult supervision. We r planning to move in US (Dublin,California )or Australia. Still not decided. Wanted to know about the school support system over there. Will they allow my son to a mainstream school with a shadow or put him in a special classroom. How is the peer pressure there and bullying??? My son goes for lawn tennis, swimming, Tabla and drum classes here. He is very good In music. If I want to continue these classes there will it be very expensive??? Or from school they provide any sports. And which state in US we can get maximum support. Plz reply. As a mother I am really worried for my son's future. TIA. Regards, Mouri.
 

qass 2017-04-10 07:20:05

 

Hi Mouri, I sent an invite to you. If you have any pvt questions I can help with. PM me, I'll try to answer. 
As for some of the questions in your prev post.

I am still in a grey area of whether India would have been better for us. I will never know. If you have made that decision and decided to move out of India, I would suggest US and not Australia. I would assume at some point, you might want for permanent Residency, but Australia (or any other country with social healthcare) has very strict rules for ppl with disability immigrating to them. Search the internet, you will find hundreds of horror stories. It would be hard to be believe, but scores of ppl with disabilities are denied permanent residency in such countries everyday outright because of the disability.  For this reason, US is better than every other country on the planet. 

I haven't lived anywhere else, so I cant give you a relative opinion, but our experience has been ok-goo in bay area. Schools are crowded but not so much to affect quality. I haven't heard of of too many bullying stories (there are always some), so I don't think that's a major concern here. Dublin is is a nice place with India Like climate, so kids can play outside all year long, which is a huge plus. Your son seems to have lots of skills,  the bay area defenitelyhas facilities where you can continue all the activities you listed. IT might be a lot of driving and lil bit expensive , but not unavailable.   As for mainstreaming, obviously, its a case by case decision, I do not have much experience with this question, I will refrain from commenting.  There is a group called 'Jeena Parents' in Facebook, Its a group of families of indian descent who have kids with special needs. Its a great support system for new comers. I will be glad to answer any other questions you might have. 


 

Mouri 2017-04-10 09:01:52

 

Thank you qass for all ur inputs...yes even I read a lot about Australia's PR rejection based on disability...we wanted to go in a work visa...same for US...still didn't decide for PR...but even for work visa also Australia will permit or not donno...my husband is very keen to go to US...but after TRUMP, the kind of news reading against indians or Asians, it's scary. Here in India we are ok...but somehow I feel the world for my son becoming narrow slowly...though he goes classes and all there is no problems, even people are also very supportive but schools are a big issue here. Either u take shadow teacher and without their absence ur child is not allowed to go to school or the option left special school. So before that situation comes we want to move. Still in dilemma. Will PM you very soon. Thank you.
 

qass 2017-04-10 22:20:10

 

just to clarify, I am thepinkdad, changed my profile name, for, I dont remember why. 
 

qass 2017-04-11 00:03:07

 

IMHO there is nothing that is equivalent to a supportive family anywhere in the world we might go. But , If your concern is with recent political changes, take those happenings with a grain of salt.
Consider these
1- You are moving out of your country and entering a completely new society. There WILL be some uncertainties.
2 - Sentiments against foreigners are there in every country and usually appear much more widespread than they really are because of the (needed) media attention.
3- Staying in India does not guarantee there wont be sentiments against us based based on our cast/religion/our kids issue or many other things. Discrimination is everywhere.  It is an unfair world. 






 

Mouri 2017-04-11 07:26:21

 

Absolutely...things r getting cleared to me...thank you so much Qass (thepinkdad )...BTW it's the case of lost and found 😊...
 

anshmom 2017-04-15 15:23:57

 

Hi - My kids dependent visa got rejected for Aus recently due to Autism. You need to consider Aus out of choice
 

Prateek1105 2017-04-18 19:47:30

 

Please visit my blog on this topic at prateekshrivastav.com
I get many calls on this topics of US/UK/India and I have collated my feedback in the blog on my site.
Regards,
Prateek



 

Mouri 2017-04-18 22:05:25

 

Thank you Prateek...will definitely visit...
 

MaheshWisc 2017-04-25 02:10:33

 

From my observation, usually during the child hood days Western countries have better therapy and support for kids with autism. But once the autistic kids become teenagers and adults there is very little hope for them in the Western countries. In the western countries it is very hard for even non-autistic people to make friends. Western countries have a very low population density with life mostly oriented towards work. Most of the time after school, high school and some times college the autistic kids are left to living at home while rarely venturing out. They will have zero social life and interaction. During a recent study of autistic kids in the UK they have concluded that suicide is one of the leading causes of death for autistic adults because of depression and loneliness. In the Western countries you have to initiate conversation and have to be outgoing to even make friends. The dating scene in college and high school tends to be the survival of the fittest and autistic people fall at the end of the ladder and most of them will not have girl friends or never get married. Also the minority factor and they don't look like me factor plays a big role and usually hinders any chance of meaningful interaction.

India as a nation is much more accepting to people who are aloof or with people who keep to themselves. But in that sea of humanity there will always be a chance for them to make some friends who relate to them or if they are lucky enough some one accepting enough to marry them. I know a family from Chicago where both the husband and wife were doctors with an autistic son. The son was verbal and could talk and do his daily household activities but he was very bad with keeping a job or managing his finances. The parents moved to India when he was 20 and retired in Pune. Luckily they were able to find an accepting women that was willing to marry their son. They were married in 2010 and now have a son and a daughter luckily both were non-autistic. So now the son had a meaningful life with a family to look after him when the parents are gone. I also heard of a couple who published an article last year that their autistic son really improved when he moved to India. 

http://www.bonobology.com/marriage/family-dynamics/364-caught-in-indias-spell

The best thing I suggest is to raise your kids in US/UK during childhood years but move back to India around the time they are around 10. It might hard for them initially but they will adjust over time. And also apart from looking after your kids, the best thing you can do at this point is to concentrate on your careers/business and plan on saving and leaving as much as possible for your son/daughter. You have a life and a career too and the success in your career will spill over to your child's future. Remember, having an autistic child is not the end of the world, it is only the beginning of a life which has a much more meaningful purpose!!
 

Mouri 2017-04-28 15:20:42

 

Hi Mahesh...really nice to read ur thoughts...and felt really happy to know about the family and the boy who got married and have children...convey them my best wishes...read the link u sent too...and now I am totally confused...my son is going to be 10 very soon...this year we r changing his school ...as he was in an alternative school without any support...he become very independent...but there are many areas which I think he needs to develop...so putting him in a school where they r aware of his needs and work accordingly in a formal setup with typically growing kids without any shadow...will see 1 year how it is going and accordingly decide that will move to abroad or stay back...but as u said when the child is 10...better to come back in India...makes me totally confused...
 

Mouri 2017-04-28 15:43:19

 

Hi Anshmom...sent u a friend request plz accept...r u back in India??? Wanted to know about Australia...as u said ur son's dependent visa got cancelled due to autism...wanted to know more about it...do we need to tell them before applying visa??? Suppose My husband will go for a project for couple of years...obviously me and my son will join him as a dependent...we have no plans for applying PR...still it will be a issue...plz need some more information about it...
 

abcd0 2017-06-14 12:28:23

 

Hi,

This is a good thread and got a lot of info. Thanks to all for your points.

My son is not diagnosed yet and was initial diagnosed as features of ADHD, and I'm in India but I have an opportunity to go to USA for some time(may be 3 yrs max). My son is now 2 and I'm wondering if it is good decision to move to USA now both with the political scenario and my son showing a lot of red flags (learnt very few words but now no words, very less eye contact, doesn't respond to name, can point to objects on a board or TV). 

The doc suggested to keep him in regular play school school but i can see that it hasnt helped him with the problem areas though he learnt actions for rhymes. I'm looking to go for a second opinion now after 6 months.

I will be going to Newark, NJ. Can someone throw some light on insurance, facilities, etc for NJ? and if i should take my son along of keep him in India for sometime until I settle in and find schools before moving him there?

Appreciate all the help
 

GilBaki 2017-06-15 03:02:20

 

All the above comments help some one who's transitioning to USA ... but the unseen side of it which i'm facing now , looking for some suggestions and info... I live in detroit with a 6 year old in ASD and another one typical child. With all therapy and school he's the one who cannot attend even a half a day special school or even one hour OT ... crying inconsolably often and i get calls from school and to come and pick him ... then in therapy even the therapist cant handle him (which is weird) and send him in between... i'm talking about best school and a therapy center who treat 100 's of autistic kids... now i have to have him at home crying and screeming for the whole day or atleast half of the day , not able to cook or take care of my husband and lo... running to doctors alone with him looking for some solution.... but in vain... in this situation i feel a helping hand is important which will be in india , as long as my parents or some relatives can atleast feed my lo and us ...
  i'm seriously upset and feel like goin back to india and send him to some special school and get some help ... and try some other medical approach like sidha , homeopathy... tired of running ,i dont know if i'm missing something or US doesn't work for everyone. 
 

Ganesh1122 2017-06-15 22:12:39

 

We live in Connecticut. Let me know if you need any information. you can contact me @309-533-0326
 

qass 2017-06-16 04:41:22

 

 GilBaki, have you tried talking to some parents in the same situation through some local support group? Detroit must have a significant Indian community and probably has channels where you can discuss with other parents in the same position, which could be support in a way. Sorry about the struggle.I know its tough. 

Definitely nothing works for everyone, if you think you should give India a try, maybe you should.  Maybe the informal, more intimate environment is better for them, We never know, that was what my dilemma always was and why I started this thread. 


 

GilBaki 2017-06-16 17:45:37

 

qass, i spoke to some parents who have kids in high school or middle school, and all they say is "we have faced it. yes its tough" . everyone have different kind of situation and issues , but i should say their determination is the main key here... some of them have close relatives or family members for help in close proximity which is another key factor. 

About goin back - yes even i have the same dilemma. Pros : they have grandparents , who can love them even after all of their bad behavior , then we'll definitely have help physically and emotionally , kids who have socializing issues will meet more people (relatives, surrounding vendors, shopkeepers, maids , neighbours ) who talk to them.  Cons : weather , waiting , travel time, school rules, fees , therapy expenses ... the list goes on ... so we should balance which works ... so its a never ending dilemma... please apologize if i'm wrong. 
 

GilBaki 2017-06-16 20:54:22

 


Hi abcd0, 
Even my son had "SAME" issue when he was 2 1/2 yrs and now he has PDD. So the best suggestion is to act quickly. Send him to some therapy, and child psychiatrist may help you with the process in India. In US i can give you some info which i've been thinking about writing for a while ... 

the process : (Mostly based as per Michigan laws ...hope its more or less the same in other states)  

1. Insurance : 

ABA :----

     Most of the US states have autism coverage ,but please check if they have ABA coverage. Most of the psychiatrist prefer ABA here as this gives good results. They dont stress like indian doctors ... they say its upto us. But personally i will suggest any parent to definitely go for it. So first its better to call the insurance before moving and check the ABA coverage.    Once its confirmed that you have coverage , to start therapy in an ABA center (called providers here) you need a doctor diagnosis report - which is not from india but from a valid US behavioral specialist/psychiatrist. So for that you should ask your pediatrician (primary care physician here) to refer a behavioral psychiatrist for the assessment. 

    Normally the waiting time varies from 6 months to 1 year. After you receive the assessment report , contact your ABA center with the reports and they'll find a BCBA for assessment(different from doctor, they plan their goals) and then therapy starts... which normally takes 3 months ... some places the waiting list is even a year. 

 Why ABA because , they work on potty training , verbal communication, behaviour, and mostly they spend more time with the child- which ranges from "25 - 40 hrs a week"... and the therapist is mothly assesed by the centre's BCBA and they change goals once its met... this gives good improvent for the child ..so when you start early say 2 yrs you can definitely see changes in 3 yrears down the line...

Other therapies :
 ---------------

OT / Speech : which is convered in most of the insurance. Insurance allows to take 2 hrs speech and 3 hrs OT a "week" max i believe... 

Floortime , physical therapy: similar to OT and speech , talk to your insurance about the allowed hours. 


2. School: 

  Before deciding the apartment please check with the school district if they have special ed in their district and what are the options ... some have early childhood options ranging from 0-3 .. then 3-5/6 yrs in pre school (early childhood special education services). You should register your kid first in your school district then they do a assessment (which is a team of speech therapist, occupation therapist, psychologist, social worker , special ed teacher) then they normally take 30 days to take him in ... show your india assessment to them and ask them to take in special ed... this is helpful bcos they have speech and ot in the class ... 
 
half a day - 4 or 5 days program is provided in schools. may be you can try him in day care in the morning , so that he watches normal kids ... 

3. At home: 

    Since therapy and school is a time consuming process and environment is new for the kid , it takes time to adjust. By then parents especially mom can work at home with the kid , OT, speech with flash cards , walking , neighbors etc... mom should be independent - driving mainly which is a MAJOR factor here. 


Note : Please double check with the insurance and centers for "in-network" doctors , therapies, assessment.  (ABA in the morning and school in the afternoon is best i heard from most of the parents during early childhood days) 


please correct me if i'm wrong ,or if i missed something. 
 

qass 2017-06-17 05:57:15

 

GilBaki, you are right on the pro/cons in India. We can attempt to recreate the intimate and more personal environment in india here. It wont be as in india, but close. 
I bring my parents or in laws over alternatively so that its only a few monts a year that we are by ourselves i nthe house. 
I ask for multiple ABA therapists so that she is used to more ppl. I pay and have different caretakers come and take care of her so that she interacts with more ppl. I take her Everywhere with me when possible, it is very difficult and I dont know how much longer I can do that. But i take her to the park, grocery, eat out often, hikes, car service etc. All in hope of just forcing her to live in a social setting.   In India, all these things happen by themselves.  But I dont know, the benefits are also here. Work is less stressful, I can work from home and be with her, life is comfortable, you can save more money for them, special needs understanding in society is btter than in India. I dont know. I am not trying to give a solid answer, because I am sur e noone has one. But just passing my thoughts. 
 

hope57 2017-07-23 19:15:53

 

@GilBaki If you are already aware that your kid is autistic, then what do you mean by it takes 6 months to 1 year to get assessed in USA? In our case, our pediatrician in india said that my son is autistic. Actually we are planning to move to US, can you please help us in understanding the process to get assessed there?
 

GilBaki 2017-07-23 20:51:33

 

Here some therapies(aba) won't accept assessments from india. . They wanted a behavioural psychiatrist or pediatric psychiatrist in US to access and give report... so the process is your pediatrician will refer your child to a hospital who does these assessment. But there will be a long waiting list ... it normally takes 6 months to get an appointnent... but you can find other docts in nearby city and try to get an appointment quicker... but it depends on availability...
 

hope57 2017-07-24 05:26:14

 

@GilBaki, 

Thank you for the information. Once we get the appointment with behavioural psychiatrist or pediatric psychiatrist, how long will it take to get the assessment done? Will there be many clinical tests etc..?

Can we voluntarily(spend out of pocket) find therapists to get treatment started instead of waiting for final assessment? 
 

rad2013 2017-07-24 22:37:05

 

@hope57
the wait time differs for different city.
I moved to US(Texas) last year  and the wait time was just 4 months. As soon as We got here, we got referral and assessment order from general pediatrician and got on wait list for ABA. In the meanwhile, we got assessment for autism in 2 months time. How old is your kid? If your kid is 3+, you can start school services till you start ABA.
 

sb83 2017-07-24 23:48:35

 

@Prateek1105

Thank you for sharing the blog. It was very helpful and informative. 

I am in a situation about deciding between India and USA. My son was born in the USA, till 2 yrs was not talking and was delayed in most of the milestones. We got him evaluated and the results were he was developmentally delayed and there was no conclusion on Autism. He had none of the evident autistic symptoms of Stimming, flapping etc. 

We decided to move to Mumbai India where I have all my relatives in Mumbai or Pune. He was evaluated in Umeed foundation Mumbai and Dinanath mangeshkar hospital pune at age of 28 months. He was diagnosed with mild autism.

With all the social interaction he developed speech at 29 months. He is 34 Months now and started speaking 3-4 words sentence, asking for his needs, interacting with kids/cousins/friends. He is more vocal and social as well. But with all these he also has echolalia (its decreasing as he gains and understands more vocabulary). He currently goes to a international nursery in Mumbai and has been responding well. He is going through the therapies 3 times a week. We have also start the GFCF diet and her is responding well to it.

I am in a situation where I have an option to move to the US for a long term assignment. I am unsure if I should move back or continue in India considering the Echolalia situation. I am not sure if the therapist I am going to in Mumbai are capable to handle the situation. Just judging between the pros and cons of being in US/India is becoming very difficult.

Any suggestions here will be very helpful.

Thanks!
 

 

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