Wednesday, January 16, 2008

Here is some advice from me to me
Please do flooritme by following the child' lead
We had a really boring and depressing time last evening because I took out some blocks and wanted him to play with them
I really really should just focus on stuff he likes to do
Sensory stuff
Water and music based stuff

Tuesday, January 15, 2008

double post
I want to say that we suspect R also has Apraxia
His desire to communicate is very high – particularly for the things he wants and likes – So for example if the Baby Bumble Bee video is on – he will drag me in front of the TV and when they show the image of Pizza he will look at me with such keen expectation on his face and do a happy dance when I say out the word - “Pizza”
And this is literally all day!
The use of PECS honestly has been just great in whetting his appetite to communicate. Thank you everybody who encouraged me to use PECS
Numbers which are his special love – I know he is just so keen to say them – and he knows them all and he can count things etc. like if I ask him “how many teddy bears are there “– he will touch them one by one and then hold up the right number of fingers – but if he is holding the symbol “1” and uttering something – it will sounds TOTALLY different like “aaaaaaaaaaaaaaaaaaaaaaaah”. I also sometimes hear him whispering “papa” so many times in a day. The other day he said the word “bubble” but did not say it again
Then reading another person’s post here about how their child never graduated beyond the infant nipples “on the bottle – That was R – he also started solids at 14 months almost .
Starting solids was a HUGE struggle and even today he will not eat any vegetable – I still feed him dinner by hand – which is usually some kind of spicy chicken rice veggies stir – fry – which I STILL puree and he is 3 years and 2 months old .
Suddenly it just clicked in my head and I felt that its not just his lack of desire to talk but that he Cant!
We asked his pre-school and his SLP said that makes sense – I love his Pre-school and also his teacher but I really hate that they did not tell us earlier .
It seems the more challenges we overcome the more they come up. But surprisingly my feelings over this latest development are not down and dejected. I am actually very happy that we found something that we can work on and I am VERY grateful that this thought clicked.
I am just glad that we can develop a gameplan to help R do something that I know he really wants to
Sorry for the long post but I did want to write this in case this is the situation some other parent is dealing with but not knowing why – it may not simply be the case lack of symbolic understanding but also a case of mouth muscles not working right and disability in motor planning – all the sounds together to make the word

Monday, January 14, 2008

After many many days - this weekend - I just paused from life and had a real Floortime weekend - and I really mean after many days
Lots of swing, sing swim and cuddle time
We even did Pretend Play with the Little People - I loved the weeknd and R was sooo happy
I have got to learn to press the "Pause" button on the rest of the world and on laundry and on cooking and Swiffering and just focus on the most precious part of my life which is R and A
Truly I am not in crisis mode any more – I do feel a pinch when I will hear a child much younger than Rohan chattering away and their mom/dad telling them to be quiet- but most of the time I just don’t compare –

And surprisingly many times I compare proudly – Last month a friend had come with two NT kids – one of them is Rohan’s age and I was bracing myself – but her kids though wonderful were just sooooo demanding and noisy and when they left my main thought – believe it or not was -“I don’t know how she does it “. I don’t bother about all the evaluations much either –

Earlier this month we were at the first meeting for preschool and two of the evaluators said two totally different things – one whom he liked and performed well for said he was amazingly bright and knew colors , shapes, numbers etc – the other said he was cognitively really low functioning and did not in fact know colors, shapes numbers the alphabet. ( he knows them all by the way and points them all out correctly when he is in the mood)

Yesterday DH and R met his neurologist ( we meet her every 6 months just to show her how Rohan is doing ) and she predicts that he will be a savant ( genius with some special skill ) . When two skilled professionals can evaluate him- within a matter of weeks - as a genius and as cognitively low ( read retarded ) – I don’t put too much weight on what any of them say – I think nobody knows and they are all making educated guesses. What I do know is that - I am not going to let anyone else define and classify Rohan and tell us what he will or will not do. I don’t see anybody making those predictions for NT kids – like your kid is so defiant and aggressive – in 20 years he will surely be in jail and doing drugs – why is the intense scrutiny reserved for those kids who are not the norm .
I truly hope for him to do great and have a happy good life and be independent one day !

Well enough of the philosophy – looks like I am not capable of brevity even in an email
Someday I feel like R really really really wants to talk - you should see the great look of expectation on his face as he looks at me as he sees a number Example if a number comes up on one of his videos - he will quickly drag me to the TV and then look at me eagerly till I say the number - yet when he tries to speak the word sounds nothing like the number - for example - "1" will be aaaaaaaaaaHe really wants to talk and I am starting to feel that he really can not - its not just a situation of "autistic kids dont think symbolically , the think in pictures"its that he actually physically cannot Today DH mentioned it to his teacher and she said that his SLP also thinks so Duhhhhhh could have mentioned it Something else to research - in one ways its very discouraging - in another way I think its better to just face it and come up witha game plan

Vaccines or not ?

Actually there are a lot of people who say vaccinations cause autism- I do believe there are many roads to autism and autism is a blanket diagnosis for when the doctors cannot tell why your child is not developing the way he should –
I do believe that they large number of vaccinations that were giving to very young children may have been responsible for many of our woes – by the CDC”s schedule our kids get 30 vaccinations or more by the time they are 18 months

We believe Rohan’s Autism started at 17 months – between 12 months to 17 months had 6 ear infections and 6 rounds of antibiotics. He also had the MMR vaccine which is a combo of three vaccines some of which are live virus
So basically we were introducing new viruses into an immune system that was already compromised with repeated illnesses. In my heart I do not know whether we caused ASD or this was just a natural regression

But if I could do it again I would
– Delay his vaccines.
– NEVER get the flu vaccine either when pregnant or when baby was young( I did both because doctor told me I should ) – its one additional vaccine and no one tells you this but it contains mercury as a preservative – the ingredient is thimesorol ( spelling ?)
– Split up the MMR – ( split it into three different vaccines – one for measles, one for rubella and one for mumps and give them 4 weeks apart)
– NEVER give vaccines when they had been ill in the last months etc, maybe choose a daycare till he turned 2 where they had 5-6 kids total not a large daycare so he did not fall sick that much in the first 2 years
I mean its ridiculous the doctors actually insist your child gets a vaccine when he is 2 days old.
I feel so bad - we spend so much energy finding out all the reasons to not circumcise your child (which also I am strongly against ) but did not research something else which has had such a profound effect on our lives. The stats for autism in a male child is 1in 94 – so if one has a boy one should do a lot of things to just be careful

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