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Swapna, Updates on the Kids (Page 6)

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tulipbaby53

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Posted: 24 September 2009 at 9:29pm | IP Logged

I think people are just closed minded! Like, they are always wanting unity and sameness, so when something challenges or changes their perception of normal, they get scared almost. I don't think they're reassuring you that your child is normal more than actually reassuring themselves that there's nothing wrong with being different.

I don't know if that made any sense, but I was trying to say something good...just not sure how to word it. LOL Made a lot more sense in my mind...ErmmLOL

 

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s.munagala

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s.munagala

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Posted: 24 September 2009 at 9:49pm | IP Logged
Mahika,
 
You read my mind so totally!!!  No matter which way any one might try and spin it, our kids HAVE autism... there is a reason why they have been diagnosed as so.  Trust us folks, there would be NO ONE and really I MEAN NO ONE who would want it more to be true that our kids don't have this horrible condition, but we have to be in reality if we want to do right by our kids and get them the help that they really, really need.
 
We have the same things going on with us Mahika, that you describe in your post..."Oh, he does not look autistic, he looks "normal", the doctors must be mistaken, he does not have it".  I can't tell you how many times I've heard that from people, and I've had to explain to them that he's on the borderline, but the fact is that he does have the disorder.  We have known instinctively about it since he was 3 and not really learning to speak, that something was wrong with him.
 
When he was diagnosed, I cried for weeks and weeks about it, wishing and praying that it was a false diagnosis.  I fell into a deep depression, and it has taken me YEARS to get to this state where I have come to terms with it and made my peace with this fact.  I will never truly "accept" it to be honest, since I think that would be letting the disorder win, if you know what I mean, and I would rather fight to raise awareness and for researchers to find a cure.  Hopefully that will happen in time enough for my son to benefit from it, and for me to be able to see those benefits.  :)
 
Take Care All!
Swapna


Edited by s.munagala - 25 September 2009 at 1:12pm

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Posted: 25 September 2009 at 6:55am | IP Logged
Oh, Swapna, I feel what you are saying. YES!! Also, not all autistic kids look it. There is sort of a way you can tell when they are moderate or severe; I can see their eyes and know they are autistic. But it's not as obvious as with Down's syndrome, so it's easy for people to say, "You are just not being firm enough with him; force him to get used to listening to you." Uh, yah. The best part is that we have an older kid who is not acting up, so why don't they process that if we are able to get her to behave, why would we drop the ball with the younger one..

We could tell from when my son was about 1 that something was not right, but the ped kept brushing me off. When he was 2, I approached the public school, and they said to wait till he was almost 3 because they didn't want to assume there was a developmental issue when he might just be a late bloomer. I accepted it and we waited, but I felt frustrated that I KNEW he was probably autistic and we were struggling, but we had to basically sit on our hands. The autism centres around here all have endless waiting lists just to get an eval, and they are expensive too. Now that the school has tested him, the ped is all apologetic and dying to write referrals. SNORT.

Thank goodness at least his school training has mitigated some of the craziness. Not all, since he is still so young, but it's not as hopeless as it used to be.

Swapna, have you ever taken Rish to India? I have never taken my son out of the US, though my daughter and I have gone to visit everyone before. There is a family trip coming up in a few months (my in-laws' side) and they want us to come too. But I am terrified about his food issues and how we will manage. His diet is so restricted as it is, and I am not emotionally strong enough yet to handle all the comments. Even the cousins who live in the US can be so ruthless with their opinions; I can tell myself all I want that oh, their talk doesn't matter, but this is my baby....

Mahika.


Edited by MahikaL - 25 September 2009 at 6:57am

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Posted: 25 September 2009 at 8:29am | IP Logged
For my favourite mums,
 
Sorry for this rather late reply…………..

 

While both the autistic and the hearing impaired  have little speech / articulate speech, the problem for both is a bit different.  The access to understanding sound maybe blocked by the brain (at times) in the autistic, but in the case of the deaf the ear (and/or the brain) plays the villain and obstructs sound from reaching in.  But teaching speech is probably the same.  As you know:

At ages three, four, and five a child's vocabulary rapidly increases, and he or she begins to master the rules of language. These rules include the rules of phonology (speech sounds), morphology (word formation), syntax (sentence formation), semantics (word and sentence meaning), prosody (intonation and rhythm of speech), and pragmatics (effective use of language).

Teaching the deaf child speech is probably a little different.  Hearing aids, implants etc are important to aid speech.  The child is more receptive, tries to gauge sound, tries to hear and reproduce sound.  What both the deaf and the autistic need is to "listen".

Children are children and our responsibility is to pull them into our circle as gently as possible.  Cajole them into interacting.  Even if you don't know which method to adopt as a mother, you know the aim so move towards it.  Take hints from your therapist and start home schooling at once.  "Reinforcement is the key to many questions.  Break things down and persist."  I was taught to say this along with my prayers every morning.  Your child needs mainstreaming and who better to initiate this than you as the mother?

 

Use plenty of colourful flash cards which may force him to pay attention to you.  Large colourful story books are helpful.

 

I have gone quite a bit around the net looking for data in my field, and I have several links for autism too.  Would you like to have them?
 
@ Swaps ...............I know the heart break you have gone through ...... and I am sure you're going to rise like the phoenix for your son  Thumbs Up Heart Heart Hug
 
@ Mahi ........ Take him and go visiting family in India.  There are autistic children here too.  People are the same ..... and there are plenty of decent ones around too. Hug

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ZindaDiltulipbaby53

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Posted: 25 September 2009 at 9:40am | IP Logged
Hi Mahi and Swapna. I just saw your post since I haven't been here for a week. It was very emotional reading for me....from your sweet happiness till your struggles with the insurance.
 
When I lived in India, at the age of 10 i met an 4 year old autistic child. She lived in my neighbouring building. My aunt who was a beautician used to go to her house for her mother's needs since she didn't have any time to go to parlour. At the time of myself being a kid, I didn't know why the child behaved this way or why she troubled her mother so much. I used to go to her house till the age when I was 18, but by that time we had became friends. It used to be twice or sometimes even 3 times a month that we visited her. I used to play with her when my aunty was busy with her mother probably doing a facial or something. What I wanted to say is this was a not a mild case, but with the therepy session, I could see a difference when she was 4 and 12. A very big difference.  
 
I am very dissappointed in the insurance companies in the States. In my country every autistic kids get proper attention, whether its extra speech therepy or extra money only for the kid. There is no waiting list. There are autistic centres, hostels, nurses available in every city.
 
My MIL who used to be a daycare attendent for autistic kids, has three kids at her place living like her own kids. One is with down syndromme, one a mild case of autisim, one a major case. All three are provided  24 medical assistance+ transportation+ expenses, special schools and activities. 
 
I loved reading your post since it helped me understand the emotions and feelings of a parent.

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skepticalZindaDil

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Posted: 25 September 2009 at 10:03am | IP Logged
@ Swapna & Mahika - this is my first post here to both ladies. I cannot even begin to describe how much I admire your strength. God has chosen you two to be mothers to special children because He knows that you have that something extra that ordinary moms like me don't have. You both are true angels.
 
About going to India - all I can say is a mom is like a lioness, no one can say or do anything to her cub...you have what it takes inside you not only to cope but to thrive in that situation - never doubt your inner strength, you have come this far & you will excel beyond. Never stop believing in yourself & your strength...
 
@Skep - always love reading ALL your posts!
 
God bless...
Kalyani


Edited by h&rblock - 25 September 2009 at 10:05am

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Posted: 25 September 2009 at 10:52am | IP Logged
@ Skep: I loved reading your post! You spoke everything so clearly, and it's very true. I love this line especially:  "Reinforcement is the key to many questions.  Break things down and persist." This is what I have to with my brother to get him to learn and remember his work.
 
@ Simz: Yeah, the USA is so-called "open-minded" and "broad", but it's very backward in many ways compared to other countries. Especially with assisting special needs children and their parents as well. It's really bad! Thumbs Down I really feel from my heart for all those parents that have to go through battles with the schools or insurance companies just to get their child the right attention.
 
@ Mahika: I don't know...maybe you all should just go to India? I'm not trying to butt in you all's personal business, but I think it might be nice for your son. I don't know how well he'll deal with the long flight, but your relatives do need to see him and accept him for who he is. It must be hard though to deal with people's narrowmindedness, but I think you both as parents will be able to handle it well! Big smile

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skeptical

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Posted: 25 September 2009 at 11:58am | IP Logged
Originally posted by tulipbaby53

@ Skep: I loved reading your post! You spoke everything so clearly, and it's very true. I love this line especially:  "Reinforcement is the key to many questions.  Break things down and persist." This is what I have to with my brother to get him to learn and remember his work. These words were told to me by my teacher when I became a teacher.  Its a motto for all those who take care of children.
 
@ Simz: Yeah, the USA is so-called "open-minded" and "broad", but it's very backward in many ways compared to other countries. Especially with assisting special needs children and their parents as well. It's really bad! Thumbs Down I really feel from my heart for all those parents that have to go through battles with the schools or insurance companies just to get their child the right attention.
 
@ Mahika: I don't know...maybe you all should just go to India? I'm not trying to butt in you all's personal business, but I think it might be nice for your son. I don't know how well he'll deal with the long flight, but your relatives do need to see him and accept him for who he is. It must be hard though to deal with people's narrowmindedness, but I think you both as parents will be able to handle it well! Big smileYes I agree.
 
Hugs to all of you............you all deserve it.  Hug

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