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Swapna, Updates on the Kids (Page 7)

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s.munagala

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s.munagala

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Posted: 25 September 2009 at 1:43pm | IP Logged
Thanks for the encouraging words everyone, we really appreciate them, and it helps us when we feel down in the dumps to know that people out there understand what we go through, and that we can always come to this forum and hear a kind word to lift our spirits. Big smileClapStar
 
Mahika, I have taken Rish to India two times.  Once when he was 2 years old before he was diagnosed, and then again when he was 6 years old.  He was ok for the 1st trip, but the one when he was older was quite traumatic for him, since it was not a happy one.  My mother-in-law had just passed away, and when we arrived in my husband's house, there were a bunch of relatives (ladies) sitting on a mattress/sheet in the front room literally WAILING/crying, banging their hands on their chests and screaming in grief, and that scared the living daylights out of Rish!  He ran from me and shut himself in a bedroom, only allowing me to come near him.  He sat in the middle of the bed, refusing to let go of me, burying his head into my chest.  Nothing could console him them, he just wanted and I quote "The crying aunties to go away".  That set the tone for the rest of the trip, and even when the people all left and we were in the house with just our family he was still so badly affected by the whole thing, he would just want to be stuck to me all the time.  I fianlly pre-poned my ticket to come back home and came back leaving my husband over there to complete all the formalities.
 
But, I have taken Rish many many times to England to my folks place in Manchester, and he LOVES going there.  We have a lot of friends there and they are mostly Indian.  They all understand about him and include him in  everything, every time we get together for parties and whatnot.
 
I'm not sure about how to deal with your sons food issues, but since India is so diverse in the type of food that's available, it may not be such a big deal to handle... maybe! :)  The one thing we were EXTREMELY careful about was our water intake.  We made sure that we got bottled water from places like medical shops, since apparently they have bottles that are not containated or doctored with.  We would just buy them in bulk and store them at home
 
 As for dealing with crass comments and people's lack of understanding, I don't know what to say except that maybe instead of reacting, you could perhaps try and explain to them that there is a lot more going on with your son, and that autism is a disorder that needs more exposure there.  The show may be a great tool for you to do this too, since you can tell them to watch a few episodes to help their understanding.  It will surely hurt though when people say things, I know it will, but we cannot control what people say can we?  We can however control what we feel and do about it, so take the high road Mahika, even if you shed a few tears and most likely you will (knowing how blunt people can be in the way the express themselves over there!), you can feel better in the knowledge that you are increasing the understanding of ignorant people :).  I hope I'm making sense! :)
 
Take Care everyone :),
Swapna


Edited by s.munagala - 25 September 2009 at 1:45pm

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MahikaL

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MahikaL

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Posted: 25 September 2009 at 2:06pm | IP Logged
I appreciate you writing about your experience with travel, Swapna. I haven't taken the kids to India, but my daughter has come with me to SEAsia, where my immediate family is. Even before we had a diagnosis for my son, I sort of knew he would scream through the flight etc. And my parents are pretty elderly, so they can't help me a whole lot.

We've taken him on trips within the US, and he usually adapts pretty well, as long as we keep his routine the same. The food has always been a nightmare, though. He won't eat unless I cook the food and make all the textures how he likes, and his digestion goes nuts if there any new ingredients. And countless times we were made to throw away soy milk at security checkpoints, leaving him with nothing to drink on flights.

Poor Rish, I can just imagine how he felt. I'm glad he enjoys his UK trips, though. Will you ever move back, you think?

I am also afraid of my MIL's reactions to people's comments. She is very invested in other people's good opinions, plus she is very upset about my son's diagnosis, so we keep having to deal with her drama also. Sorry, I don't mean to be so disrespectful, but it's the truth. She is having a hard time accepting him as he is, and there is a lot of pressure on us to sound upbeat about the whole thing around her. This makes us feel alone and tired.

There are so many posters here who have some connection to special children. That is awesome. It's so nice to read everyone's experiences and observations. I feel like I know some of you already.

Mahika.

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s.munagala

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s.munagala

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Posted: 28 September 2009 at 10:11pm | IP Logged

Originally posted by MahikaL

I appreciate you writing about your experience with travel, Swapna. I haven't taken the kids to India, but my daughter has come with me to SEAsia, where my immediate family is. Even before we had a diagnosis for my son, I sort of knew he would scream through the flight etc. And my parents are pretty elderly, so they can't help me a whole lot.

We've taken him on trips within the US, and he usually adapts pretty well, as long as we keep his routine the same. The food has always been a nightmare, though. He won't eat unless I cook the food and make all the textures how he likes, and his digestion goes nuts if there any new ingredients. And countless times we were made to throw away soy milk at security checkpoints, leaving him with nothing to drink on flights.

Poor Rish, I can just imagine how he felt. I'm glad he enjoys his UK trips, though. Will you ever move back, you think?

I am also afraid of my MIL's reactions to people's comments. She is very invested in other people's good opinions, plus she is very upset about my son's diagnosis, so we keep having to deal with her drama also. Sorry, I don't mean to be so disrespectful, but it's the truth.  Mahika, being truthful is far from being dis-resprctful!!! She is having a hard time accepting him as he is, and there is a lot of pressure on us to sound upbeat about the whole thing around her. This makes us feel alone and tired.  I know EXACTLY how you feel, we have many people on our side who give us the same grief, incl. my younger b-i-l, my f-i-l to name two.  But if your m-i-l cannot come to terms with it that is her issue to deal with, NOT yours.  You have enough to worry about without taking on someone else's issues on your shoulders.  Just go about trying to enjoy yourselves and making it a memorable first trip for your kids... it's an AMAZING country, you should  experience it as a family and enjoy it while you're there.  My opinion honey, though I know there are no blacks and whites ulimately, but all the same, you are not obliged to accept everyone's opinion, especially someone who should really be trying to make things easier for you.  What's the meaning of unconditional love otherwise.  Tell your m-i-l to take a leaf from your kids' book and learn how to love and accept from them.

Plan your trip Mahika, don't worry about pleasing everyone, it's a practical IMPOSSIBILITY. 

Take Care,
Swapna

There are so many posters here who have some connection to special children. That is awesome. It's so nice to read everyone's experiences and observations. I feel like I know some of you already.

Mahika.

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MahikaL

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MahikaL

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Posted: 29 September 2009 at 9:00am | IP Logged
Hi Swapna and everyone! Smile

Hope you all had a great Dussehra. We had such a blast. I just love all our festivals.

We just got back from taking the little guy for his speech eval. He roared the place down initially, then found a toy to play with and wouldn't participate much. Sigh. He finally did a huge poo, then was all nicey-nice. LOLAnyway, she has recommended therapy, but there is a long waiting list.
One very interesting thing she pointed out was that he makes this very weird sound in his throat, and we cannot even replicate it, it's so gag-inducing. She says that because he is prevented from stimming in other ways, he seems to have developed this throat sound as a way to stim which is unstoppable by any physical means. So it will need to be mentioned to his school therapists, and they can work on stopping it.

We are going to the gastro doc soon.

How is the Rish-man? Is he loving the weather?

Mahika.

s.munagala

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s.munagala

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Posts: 144

Posted: 29 September 2009 at 9:42pm | IP Logged

Hello Mahika & Everyone,

How's things going?  We are finally moved into our new home as of yesterday, Yipee!!!  Now all is left is to unpack and make the place into our own little heaven.  Rish is OVER THE MOON to be out of the apartment and into a place with a bigger bedroom, his own bathroom and his own playroom. Big smileLOL  He is also thrilled to have all his toys out of storage and back with him where they belong.  He played and played with them all day yesterday and today (we kept him home from school today since we did not have anything in place to have him ready for a school day)!!!  You guys should have seen him, it was like he was greeting long lost friends.  LOL  He had not seen these toys for 13 months, and was so happy! 
 
How was your Dussherra friends?  Hope you'll all had a great time, we did even though it was moving day for us.  We had a bunch of friends/relatives over to help, and made it into a party, it was good.
 
Take Care Folks!
Swapna

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Posted: 29 September 2009 at 10:21pm | IP Logged
Oh wow..Swapna! It's great to hear that Rish has adjusted well! Yeah, I'll bet he was excited to see all his stuff and toys again! When we moved to Texas, our stuff was gone for like a couple of weeks, and I was sooo excited when all my stuff came in! LOL
 
Congrats on your new house too! Big smile
 
We didn't really do anything for Dussera...I was studying for a test, so my Dussera was spend with my books! GeekLOL 
 
 

s.munagala

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s.munagala

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Posted: 01 October 2009 at 8:44am | IP Logged
Hi everyone,
 
Varsha hope your exam went well, and if it's not yet done, good luck!!!
 
Mahika, did you ask if there is any way for you to be pushed up the waiting list?  Sometimes if the need for the child to have therapy is great enough, they try to accomodate and find a therapist willing to help.  I wish that could happen in your case.  Did you have the Gastro appt. yet?  Were there any issues/answers you got?
 
Mahika I wanted to ask you, what is your take on the whole vaccine/thimerasol Autism issue?
 
Take Care All,
Swapna

MahikaL

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MahikaL

Joined: 14 June 2009

Posts: 377

Posted: 01 October 2009 at 2:28pm | IP Logged
Hi Swapna.

I am just a little overwhelmed right now, with my son's food issues. With his tummy obviously bothering him, his repetitive behaviors are also increased, and we are having more trouble redirecting him. Sorry to say, I am worn out and weepy. Cry Can't wait for the gastro appointment, which is next week.

His toilet training is also going on, both at school and at home. Based on the suggestions of the research study we are in, we are making a folder of pictures for him, each of which shows him doing one of his activities, so when it's time to change the task, we show the picture. It should be fun to see his reaction to a book full of his own pics.

I honestly have no strong opinion about the vaccine theory. I know it  has been disproved, but I can't help but remember that when my daughter was a baby, I had taken her back home for several months, and the vaccine schedule is slower there, so she took longer to get all the shots even after we came back. With my son, we were here all the time,and he had the whole battery of shots like how it's done here. So my unscientific observation is that he was more typically exposed to the vaccines, so if the vaccine theory is true, he was certainly in a more vulnerable position.

I heard that they no longer use thimerosal in vaccines, is that true?

I am more inclined to think of autism as a genetic condition which needs enough environmental toxin exposure to become fully developed. NJ has such a high rate of autism, NJ also has a lot of environmental pollution and dumping due to chemical industries.The two appear linked. Plus our food sources are so compromised here, so even if we try to eat organic food, we are still exposed to chemical run offs.

Do you feel more settled in the new house now? How did Rish sleep in a new place?

Mahika.


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