down syndrome watsapp group

29 replies, Page 1

juvi2015 2015-07-29 09:53:29

 

Hello all This is a mother of a beautiful down syndrome child..Now a days parents are getting in touch through watsapp group to discuss their challenges....i live in hyderabad.please if someone know abt any watsapp downsyndrome group from hyd then please do letme know... N in case hyd grp is not der then wil make a group. ..please help me..

specialkid 2015-08-09 06:48:55

 

@juvi2015
Would you kindly share with me what are the symptoms your child manifests because of down syndrome.
Is your child boy or girl? and how old is he/she?
Thank you
 

juvi2015 2015-08-09 11:51:16

 

hi specialkid My daughter is 3.9yrs now, n she has Mosaic downs, At the time of birth only we got to know that she has downs n she was diagnosed wit thyroid and small Vsd in her Heart,She was premature n vry weak...
 

swethasri2005 2015-08-11 19:34:40

 

juvi, same here with my boy,he has trisomy21 and we found that when he was 2 months old baby and 2 years back we diagnosed him with Autism. He had a ASD repaired with a open heart surgery when he was 3.6years. now he is doing good health wise. touchwood.:)
 


specialkid 2015-08-11 20:57:55

 

@swethasri2005
"He had a ASD repaired with a open heart surgery" what do you mean by that?
I understand his ASD was cured by means of open heart surgery, is this what you mean to say?
Please correct me if Iam wrong.
Thank you
 

swethasri2005 2015-08-12 00:08:55

 

Yes thats what I meant. 
 

specialkid 2015-08-12 00:29:35

 

@swethasri
So now don't have to worry about ASD and the only issue you are dealing with is Down's syndrome right!
My son had a PDA closure 2 yrs back does it have any bearing ?
 

swethasri2005 2015-08-12 01:20:19

 

what is PDA? With my boy, its both the diagnosis(downs and autism) taking its own impact on him. non-verbal, more of vocal and motor stereotypical behavior, poor eye contact, unable to express when he gets hurt, no social,... But with ABA he is definitely improving
 


specialkid 2015-08-12 01:29:25

 

@swethasri2005
PDA closure means for some kids at the time of birth the blood vessel of heart doesn't close fully there by some complications resulting less weight, frequent fever, infections , etc.
Your kids symptoms are still there as you mentioned "non-verbal, more of vocal and motor stereotypical behavior, poor eye contact, unable to express when he gets hurt, no social" in your earlier mail you said his autism was cured . Are these the common symtoms of Downs aswell ? How old is he ? and how long back you started his ABA.
We are planning to start ABA for my kid.
 

swethasri2005 2015-08-12 01:39:47

 

oh SK, I never said Autism is cured are you kidding me...... ASD means 'Atrial septum disorder'  which my boy had 2 holes in heart one is big and one is small. here in Children's hospital he had the surgery. he will complete 10 years in jan 2016. 
 

swethasri2005 2015-08-12 01:42:43

 

I started ABA 3 months back and his self stimulatory and vocal stereotypy reduced a lot.  now the sounds that he makes are all kind of a communication and we are giving words to him to use it but he struggles to use it functionally.
 

specialkid 2015-08-12 02:29:02

 

@swethasri2005
All this misunderstanding is because I thought  ASD stands for Autism Spectrum DIsorder. I have no clue it's a double entrand.
Thanks for understanding 


 

swethasri2005 2015-08-12 04:51:57

 

no worries
 

juvi2015 2015-08-12 09:45:54

 

My daughter Vsd has closed by its own...Now she is going to school...She understand evrything...the only prob wit her is speech n moodswings...The best part abt thez kids r there love is unconditional....We r sooo lucky that God has choose us as their parents..☺
 

swethasri2005 2015-08-12 19:50:26

 

you are very true juvi. my son is very quiet boy and no aggressive behavior. I learn a lot from my son.
 

specialkid 2015-08-12 19:59:04

 

@juvi2015 Swethasri2005
Yes you are true juvi2015 . Their love is unconditional but me and my wife have only one worry i'e how will my kid live his life after our death. Who will take care of him after us.  This world is not so beautiful as we think . Is there a place for him ? who will marry him? will he enjoy the bliss of becoming a father.......
 

juvi2015 2015-08-12 20:43:00

 

I know...sometimes i feel depress thinking about her future ...its vry painful..We dont have any control over tomorow or future...but we can hope positive...Its our challenge to raise these sweet lil kids...We have to teach them n train them in such a way dat they should live der life on der own independently...1 more imp thing is praying day and night fr our kids... U know i heard soo many positive stories abt thez kid....
 

swethasri2005 2015-08-13 01:02:08

 

SK, honestly I dont have answer for your(our) "only one worry". But how I am living my current life by just not asking any question about my situation because few questions cant be answered by humans few things happened without our control. :) How I accepted My Boy, I am a big believer of karma. I did little good karma so got a very good family, opportunity to live in US and get the services what My Boy needs, more than everything I have the basic needs of food clothing and shelter, and wonderful husband, beautiful kids, ...... I always convince myself thinking people who dont have the basic things and still have a child with special needs and struggle.  you know what "I am happy"!! So what bad karma I did, I dont know, but learning life lessons which no school or grades taught  who is the teacher here, "bad karma" 

Ok so now what is my prayer. "nothing" I just lit lamp in my pooja room morning and evening sit for sometimes without asking anything to god because my kuladeivam is taking care of my life and she knows what is good for me and my family. Rest is with HER!

May be I sound like talking philosophy, but for me thats the fact.


 

Hema123 2015-08-13 08:37:13

 

Hi swethasri2005 and juvi2015

i read ur post its very touch I m also in same situation my son is 4 year and 6 month I from Gujarat but currently in Australia I also thing same never ask God for anything but in my situation I can not use any services in Australia and not doing anything except taking him to playgroup and stay there with him I know he has change a lot with homepathy want to do bio test but he just like too much sweet thing so don't understand how to start so confused my situation is when I see those children in play group feel so depressed and sad my son know 1 to 100 A to Z can write on board with calk know all animals name with sound can follow instructions too this all happened after hompepathy 6 months treatment but still he his way far away from social life don't know when will things end up hope just hope that all 
 

specialkid 2015-08-13 18:48:11

 

@Swethasri2005
It was really heart touching. You seemed to be satisfied with your child's progress in US.  Was it you who posted few weeks back that you are planning to relocate to India? if yes when are you moving and to which place in India.
You live in which part of US? I came to know that services differ from state to state . Are you happy with the kind of services your child is getting in school.
Kindly reply

 


swethasri2005 2015-08-13 21:02:07

 

Hema I am so surprised why you are unable to get services in Australia. If its personal dont worry to answer. talk to him a lot and also allow him to play whatever and however he wants to play and spend his time. Does he loves music? any specific movies songs or slokas or whatever encourage him sing with him, dance with him ofcourse depending on his interest. Enjoy!
 

swethasri2005 2015-08-13 21:43:26

 

Specialkid, My Boy is definitely improving. He loves music, not any music he has his own favorites. He watch different language movie songs like tamil, kannada, hindi,slokas .. few months back he asks me for music in his ipad and then I randomly play his list of songs but now he want a very specific song that he wants to hear and watch so whats the catch here, I purposely irritate him putting my favorite songs to make him use his words, "I dont want this or change songs" mostly change song and then put his favorite. I am not much worried about "Academics" but I still still with him and do "home work time".

yes its me want to relocate to Bangalore, still planning dont know when thats going to happen. I live in Massachusetts. I am happy with the services and the school. Currently he receives OT-3 times in a week 1 after school 2 at school per week. Speech 5 times 1 after school, 2 individual at school, 2 in group of 3 kids including my boy at school and APE (Adaptive Physical Education) and Home ABA 4 hours per day for 5 days. Saturday and sunday is only family time but few hours of ABA I do at home like very basic daily living skills. 


 

specialkid 2015-08-13 23:32:17

 

@Swethasri2005
Nice to know that your boy is improving and you are very hopeful that he will definitely be capable of leading an independent life. 
I just want to know why you delayed ABA as you said it started 3 months back. How about OT ;SPeech therapy and APE when did you put these into his daily schedule?

 

swethasri2005 2015-08-14 02:27:11

 

During the early intervention, he was receiving Speech, PT and OT except ABA, so that continues once he started to go to school. 2 years back only he got Autism diagnosis, because of the employer self funded insurance we were unable to get ABA as soon as the diagnosis, So my husband requested his company for the coverage and then we got it. Get the maximum from the school. It was very hard for us when he was in 2nd grade, school wants to cut down on everything and they want to stop PT. we agreed to stop PT but rejected what they had proposed with other goals and services. we went through mediation and got what My Boy needed. Now again this year the IEP will expire in october, so depending on his improvement the team will change his goals and services and its a ongoing thing with the school

Where do you live Specialkid,  is your child receiving all the services that he needs. Are you happy with the school system? do they have monthly clinic meetings to talk about your son's development? Dont give up with school because our kids spend long hrs at school and those hrs they are very fresh and we need to get as much services as our kids wants and needs. Stay strong!
 

Hema123 2015-08-14 09:52:16

 

Hi swethasri2005 

mainly the the services are for Pr and the waiting list a lot I play a lot with my son and also he knows a lots of things but don't like music due to sensory things but so for homepathy has done good with him without all those therapy cause I have additional care taker on my cost at play group where they give review for him hope when I fly back India with therapy he recovers well 
 

specialkid 2015-08-14 18:38:17

 

@Swethasri2005
We recently moved to US, State of VA. My boy turned just 5 and will begin his KG this fall (september). We first got him evaluated incidentally when we went to his peadiatrician  for getting his health report  required for his school admission. His doctor asked few things about him and advised us to check for any Autism problem thats when we realised he had a problem until then we thought it's just normal for kids to speak lately  (upto 7 yrs). After taking him developmental Paediatrician he evaluated and confirmed that he is not a typical Autistic kid but he falls in the spectrum ASD, which is mild to moderate form of Autism. THe same doctor advised us to take this report and show in the school and ask for special education services in the school which he is getting enrolled. 
We met the school staff explained our situation and agreed to do the evaluations to enrol him in IEP. It took almost 2 months for the school to qualify him for the IEP which begins from this Septmber where his KG programme begins.
He was in the mean time admitted to Summer programme for special kids in the same school for about 4 weeks ,just to get some orientation. He will be getting only ABA  in the school and APE evaluation will be done when the school begins in the fall.
There is no OT,PT, Speech therapy  in the curicullum. I don't know whether they purposefully ignored it because there is no need for him or it comes at a later stage. His evaluations and progress is measured quarterly ,i'e for every 3 months and his IEP programme will be reassesd after 3 yrs.
Its long email please read 2 times so that you understand my case clearly.
Waiting for your comments...


 

swethasri2005 2015-08-14 23:19:49

 

Ok so now your homework starts. Again you need evaluation from the same doctor who diagnosed autism for speech, OT and PT. and Home based ABA get the evaluation . The doctor has to write in the letter saying that child needs so many hours of home ABA  I suggest you to pen down which are all the areas your child needs improvement. Please google for fine motor, gross motor and communication for 5 years old.
I hope the link will be helpful to you for assistance.  http://www.kamloopschildrenstherapy.org/gross-motor-preschool-milestones

 Set a realistic goal for the school to work with your child. Let the school propose IEP, read them and see whether the goals are OK for you. Get the maximum from the school. Gather more information about services from your state. I dont know anything about VA and also depends on which town you live whether its rich or poor to support funding special education. For school its all about funding ask them what do you want for your child. Teachers dont know about your child, you and your wife know all about your child. Have a very good relationship with the team chair person tell her that you want to work with her. 

Specialkid, its all about your childs need, how you want to see him in the next year, sort that out, get the evaluation from the doctors, talk to the chair person before the team meeting about your concerns, if you feel the proposed IEP goals is too little for the whole year, then tell her that you want to add more goals and then ask for the meeting date with all the team members.Keep in touch with your child's class teacher. Show your confidence with the school and tell them that you want to do observation in the class room to follow the same thing at home Basically be on top of them, they should know that you care about you child. 

I know I gave you too much information but just pick what you want and leave the rest. 
 

011015 2017-03-17 16:39:08

 

hello i amalso looking for the same. If you know please let me know.
 

011015 2017-03-17 16:48:25

 

@juvi2015 please let me know is there any whatsapp group. Otherwise I will create one. please share your numbers on my email sreekanthreddy999@gmail.com. I want to discuss a lot about my son. He is 17 months old.
 

Balu27 2021-03-17 00:20:51

 

Hello juni

I know it€™s been five years since your text here , just now found this forum online. If there are any whatsapp groups for downs please let me know. It€™s always good to get in touch and help each other.

please find my mail : maddalabharagav2@gmail.com


 

 

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