Parents of severely autistic kids in Trinidad & Tobago

[ttlimer]

Hi all

Just curious if anyone else who has non-verbal autistic child could point me towards local resources? Or any advice on applying for disability grant? Just a bit overwhelmed.

Can PM me if you prefer, to be clear not begging for money just would like to talk to someone who went through this already.

Thanks

[Duane 3NE 2NR]

You can try contacting The Autistic Society of Trinidad and Tobago
http://autismtt.org/

[axe]

You can acquire a grant for 1 year of speech therapy from social services. Sirlon George of Cocoyea is an excellent speech therapist. You may need assistance from your MP to get the grant, it's a cheque payable to the speech therapist, and receipt is to be returned to social services.

[axe]

Your child can be assessed by a professional which is expensive...$1000 by Dr Bahadursingh at Southern Medical. You will have to get a form from social services for disability grant which is $1500 a month. They will visit the child and make yearly visits too. You need to get acquainted with the social worker for your area.

[axe]

If the child is still young you can use baby babble and baby bumblebee videos to stimulate speech, that worked for us together with the speech therapy.

Letting you know getting the grants is an uphill battle, social services can be very unfriendly that's why you may need the help of your MP

[axe]

How to Apply from social services site

New Clients
Obtain a Medical Form from any Social Welfare Local Board Office.
Once the Medical Report is Certified by an authorized Medical Practitioner, proceed to complete the application form which is available:
Online – www.social.gov.tt
Social Welfare Local Board Office
Health Centres
ttconnect Service Centres
3. Have the child examined by a Medical Practitioner who completes the Medical Report.

4. Return the completed application form and Medical Report to a Local Board Office nearest to you.

5. Obtain a receipt as proof of your application.

[SMc]

Nice work axe

[bluefete]

Excellent advice in here.

No one knows the struggle unless you have an autistic relative.

[ReidDesigns]

So, the term I like to use is "on the spectrum" And not all kids on the spectrum exhibit the same markers. It's said if you meet one person with Autism, you've met one person with autism." Having a child with autism in the this country is an extreme challenge. I'd not like to be "that guy" and say "is the government fault" but in a way the government, especially this recent one, has done nothing or very little to support families with children on the spectrum. I can go into a host of challenges and examples, but I will stick to just this: If your child is diagnosed with Autism, (usually that would mean paying for a diagnosis out of your own pocket from the few experts in the field that exist here (and a few were mentioned previously)) the next step usually is to find a special school/space/place where they can be cared for. Depending on the spectrum, in extreme cases when the the child/person needs round the clock care, you have VERY few options. (In the 21st century we are sending autistic kids to St Anns cause "they mental" this still happens.) Additionally you need to pay for everything here. The Gov't used to pay subsidies/subventions (I forget what the proper term was) to special schools that helped alleviate the costs of educating special needs children, for example. This has since been done away with. So special schools and parents were at a disadvantage. For way too long government did nothing to help the majority of these schools. There was a school in the East in Trincity that they stopped assisting and it was terrible for families in the East to fully fund their children's education. A few schools folded financially because of it.

NOW It's not all gloom & doom. There are still some places and people you can turn to for help (at a cost, sometimes great cost) the first place I would look to has already been mentioned, the Autistic Society of TT. The other is a good friend of mine Meghan Waterman, whos trained and has a lot of experience with kids on all sides of the spectrum. Her school is https://www.facebook.com/academy.specialneeds Unfortunately outside of Port of Spain the places to find help is few and far between, and especially after of the pandemic a lot of the places where autistic kids/people could go had to close down. These are private companies that relied on fees to keep them going. Again government help is nil.

Regarding the non-verbal aspect of the child's situation, get a tablet. And get the apps that encourage visual communication. https://digitalscribbler.com/blog/5-mus ... or-adults/ not the ones that teach words right now. As with all kids on the spectrum you have to get into their world and then guide them to work in yours. Its an expensive and sometimes frustrating process, but each child communicates differently. You need to find the one that works best with your child. And have patience. Someone like Meghan can help create a system to work with that. Its finding common language. I hope this helps.

In summary, can't, won't, don't rely on the government. I have a WHOLE other bone to pick about the so called self titled "Warrior Autistic Parents" in this country, that's another whole kettle of fish.

[Kenjo]

So, the term I like to use is "on the spectrum" And not all kids on the spectrum exhibit the same markers. It's said if you meet one person with Autism, you've met one person with autism." Having a child with autism in the this country is an extreme challenge. I'd not like to be "that guy" and say "is the government fault" but in a way the government, especially this recent one, has done nothing or very little to support families with children on the spectrum. I can go into a host of challenges and examples, but I will stick to just this: If your child is diagnosed with Autism, (usually that would mean paying for a diagnosis out of your own pocket from the few experts in the field that exist here (and a few were mentioned previously)) the next step usually is to find a special school/space/place where they can be cared for. Depending on the spectrum, in extreme cases when the the child/person needs round the clock care, you have VERY few options. (In the 21st century we are sending autistic kids to St Anns cause "they mental" this still happens.) Additionally you need to pay for everything here. The Gov't used to pay subsidies/subventions (I forget what the proper term was) to special schools that helped alleviate the costs of educating special needs children, for example. This has since been done away with. So special schools and parents were at a disadvantage. For way too long government did nothing to help the majority of these schools. There was a school in the East in Trincity that they stopped assisting and it was terrible for families in the East to fully fund their children's education. A few schools folded financially because of it.

NOW It's not all gloom & doom. There are still some places and people you can turn to for help (at a cost, sometimes great cost) the first place I would look to has already been mentioned, the Autistic Society of TT. The other is a good friend of mine Meghan Waterman, whos trained and has a lot of experience with kids on all sides of the spectrum. Her school is https://www.facebook.com/academy.specialneeds Unfortunately outside of Port of Spain the places to find help is few and far between, and especially after of the pandemic a lot of the places where autistic kids/people could go had to close down. These are private companies that relied on fees to keep them going. Again government help is nil.

Regarding the non-verbal aspect of the child's situation, get a tablet. And get the apps that encourage visual communication. https://digitalscribbler.com/blog/5-mus ... or-adults/ not the ones that teach words right now. As with all kids on the spectrum you have to get into their world and then guide them to work in yours. Its an expensive and sometimes frustrating process, but each child communicates differently. You need to find the one that works best with your child. And have patience. Someone like Meghan can help create a system to work with that. Its finding common language. I hope this helps.

In summary, can't, won't, don't rely on the government. I have a WHOLE other bone to pick about the so called self titled "Warrior Autistic Parents" in this country, that's another whole kettle of fish.

I guess you can leave out names , ‘ warrior autistic parents ‘ won’t be groups that share their experiences ?

[ReidDesigns]

No I wouldn't. I find before the pandemic there was a group on Facebook I joined that I didn't like the rhetoric of some of the people there. A lot of anger towards the government (maybe justified) and a lot of saying things like "We will fight until we die" and so on that if I was in the government I would probably ignore cause well, you sound unhinged. lol But it was a general feeling that you are at "war" when you have an autistic child here. I don't feel like that at all. I feel it's more of "We need help and I don't need someone ot fight for me, I need someone to SUPPORT me." But That's Not Important Right Now.

[De Dragon]

Your child can be assessed by a professional which is expensive...$1000 by Dr Bahadursingh at Southern Medical. You will have to get a form from social services for disability grant which is $1500 a month. They will visit the child and make yearly visits too. You need to get acquainted with the social worker for your area.

Send me your contact info/location.

[De Dragon]

Send me your contact information/location.

[axe]

Once I joined a support group. Only to realize it was a venting group. No parent wanted to share their successful strategies...it seemed they wanted you to struggle like they did. I did a pamphlet on how to potty train your child and gave it to my speech therapist to share...yes I dropped out the group

[ReidDesigns]

Once I joined a support group. Only to realize it was a venting group. No parent wanted to share their successful strategies...it seemed they wanted you to struggle like they did. I did a pamphlet on how to potty train your child and gave it to my speech therapist to share...yes I dropped out the group

Love this. Yes that was probably the same group. There is a place for that to be sure. But like everything else when you feel like it's just destructive behaviour its time to leave. I prefer to find concrete solutions. But in teh world of autism, what works for one, amy not work for another.

[Dizzy28]

Went by Dr Prithviraj Bahadursingh last month. It's $1050 for the assessment and $1500 if you require a written report.

Your child can be assessed by a professional which is expensive...$1000 by Dr Bahadursingh at Southern Medical. You will have to get a form from social services for disability grant which is $1500 a month. They will visit the child and make yearly visits too. You need to get acquainted with the social worker for your area.

[axe]

Correct

[De Dragon]

Went by Dr Prithviraj Bahadursingh last month. It's $1050 for the assessment and $1500 if you require a written report.

Your child can be assessed by a professional which is expensive...$1000 by Dr Bahadursingh at Southern Medical. You will have to get a form from social services for disability grant which is $1500 a month. They will visit the child and make yearly visits too. You need to get acquainted with the social worker for your area.

$450 to type up a report?

[Kenjo]

Went by Dr Prithviraj Bahadursingh last month. It's $1050 for the assessment and $1500 if you require a written report.

Your child can be assessed by a professional which is expensive...$1000 by Dr Bahadursingh at Southern Medical. You will have to get a form from social services for disability grant which is $1500 a month. They will visit the child and make yearly visits too. You need to get acquainted with the social worker for your area.

$450 to type up a report?

It should be a very in-depth review for sure . A report is probably needed by social support and for further followup and to assess progress over time for comparison

[De Dragon]

Went by Dr Prithviraj Bahadursingh last month. It's $1050 for the assessment and $1500 if you require a written report.

Your child can be assessed by a professional which is expensive...$1000 by Dr Bahadursingh at Southern Medical. You will have to get a form from social services for disability grant which is $1500 a month. They will visit the child and make yearly visits too. You need to get acquainted with the social worker for your area.

$450 to type up a report?

It should be a very in-depth review for sure . A report is probably needed by social support and for further followup and to assess progress over time for comparison

Yes, but why $450 more? Is it that people are going in to just have the test done and not asking for a report to take to the Ministry? Is it fleecing people who you know need the report?

[Dizzy28]

Looking back at the bill the assessment was actually $550. His doctor fee is $500.

Not everyone would need a report as not every kid would require further action.

Went by Dr Prithviraj Bahadursingh last month. It's $1050 for the assessment and $1500 if you require a written report.

Your child can be assessed by a professional which is expensive...$1000 by Dr Bahadursingh at Southern Medical. You will have to get a form from social services for disability grant which is $1500 a month. They will visit the child and make yearly visits too. You need to get acquainted with the social worker for your area.

$450 to type up a report?

It should be a very in-depth review for sure . A report is probably needed by social support and for further followup and to assess progress over time for comparison

Yes, but why $450 more? Is it that people are going in to just have the test done and not asking for a report to take to the Ministry? Is it fleecing people who you know need the report?

[nervewrecker]

I realize not much people contributed or came forward for obvious reasons.

Anyone with kids in this category around 5 years or so willing to allow socialization with other kids? Not sure as to what level they are autistic or may be autistic.

And on the issue, another other doctor in this field besides the one mentioned here? I'm not sure how far research has reached in this particular field as to if its something confirmed to be hereditary but these this one may be of some interest for anyone doing such in this field, or I should say these cases to be specific.

[shake d livin wake d dead]

I realize not much people contributed or came forward for obvious reasons.

Anyone with kids in this category around 5 years or so willing to allow socialization with other kids? Not sure as to what level they are autistic or may be autistic.

And on the issue, another other doctor in this field besides the one mentioned here? I'm not sure how far research has reached in this particular field as to if its something confirmed to be hereditary but these this one may be of some interest for anyone doing such in this field, or I should say these cases to be specific.

Dr.Vidya Ramcharita assists with speech therapy etc. As per research and personal knowledge (don't quote me). One cause is parents ramming ipads, phones etc down their children's throat from day one! Over stimulation of the brain, no interaction etc.

https://nortonchildrens.com/news/autism ... ears%20old.

That's one study and there are many more.

[xtech]

I have a kid on the spectrum but he was diagnosed as low on it called a high functioning autistic kid. With ADHD thrown in. My mistake was giving him a phone at an early age to play with as he got sucked in and was hard to get it away from him as he got very dependent on it.
. It was a real struggle to get help for him. Very expensive…his mother thought he was that way because i spoilt him she didn’t think he had any of this. He is a teenager now and he is learning how to manage his problems a little bit better. Stories like the one in the link below gives me hope for even severely autistic kids. They say Einstein was autistic


Meet Jason Arday, 37. Cambridge University's youngest ever Black professor, who didn't speak until he was 11 and he couldn't read or write until he was 18.

https://www.cbsnews.com/amp/news/jason-arday-cambridge-university-youngest-black-professor-didnt-speak-age-11-autism/

[maj. tom]

I read last night that microplastics and environmental pollution are a high possible risk factor for an autism spectrum during brain development in the womb and after birth. And that regular tire wear is the largest and constant source of microplastics in our lives, and that places nearer to high-ways are always getting heavy bombardment of tire microplastics pollution. It's always in the air and we don't even think about how bad this really is.

The studies are relatively new and not conclusive, so I really don't know what I'm talking about. Just found it interesting but really alarming for all of us if true.

[pugboy]

There is org in st James called cfko which also works with kids

There is also a forum site called wrongplanet which has lots of info in general from folks who are autistic in one way or another, not a venting forum.

[nervewrecker]

I have a kid on the spectrum but he was diagnosed as low on it called a high functioning autistic kid. With ADHD thrown in. My mistake was giving him a phone at an early age to play with as he got sucked in and was hard to get it away from him as he got very dependent on it.
. It was a real struggle to get help for him. Very expensive…his mother thought he was that way because i spoilt him she didn’t think he had any of this. He is a teenager now and he is learning how to manage his problems a little bit better. Stories like the one in the link below gives me hope for even severely autistic kids. They say Einstein was autistic


Meet Jason Arday, 37. Cambridge University's youngest ever Black professor, who didn't speak until he was 11 and he couldn't read or write until he was 18.

https://www.cbsnews.com/amp/news/jason-arday-cambridge-university-youngest-black-professor-didnt-speak-age-11-autism/

Is it that ADHD goes with it or can it be misdiagnosed as just ADHD just for the sake of calling it a day.

Third subject was not considered for any form of autism at all. If anything this person is above average intelligence wise. This one actually has synesthesia and from reading a bit it goes hand in hand with the broad spectrum autism and savants syndrome.

Other two of the three doesn't have much interaction with the outside world or much of any social interaction exclusive of mental and (one subject) physical trauma. I thought it might have been a good idea for them to socialize with others that fall in the same category.

All 3 are siblings. I can't give out much information without being granted permission.

From what I have seen first hand is discrimination against people with such from lack of understanding. I happen to know one autistic individual and the best explanation was that "well de Chile retarded nah, if yuh see de Chile wandering anywhere outside call de parents one time. Yuh know dah one de waak away from home dong point dey and dey fine eeem dead by de rivah". Couldn't be more disgusted.

[toyolink]

Parents of autistic kids are true super-heroes in my eyes, and my respect and support will never diminish.
We as a country need to step-up to the needs of these very special people, this is one of the indicators of social maturity.