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

Break from Autism this week

I took a small break from Autism this week – it was really refreshing – I was in San fran this week on work( away from R ) and just did not go not think Autism at all
It was a good break and I needed it and I did not make myself take a break or anything – I just did not feel like thinking or talking Autism at all – It was good to visit the world of typical people and speak their language
R started Preschool – we really like the preschool – ver structured 3.5 hours per day 4 days a week – but this is what I have some stress with – all his individual services have been dropped – the school people assure us that it is going to be okay as ABA is their main method of instruction and for the first 12 weeks the ratio is 4 students with 1 teacher and 2 assistants so a pretty good ratio actually
But we will probably be stepping up the VB as soon as we can

How is Rohan doing?

Its so hard to answer that question – I feel I speak a different language now – In an Autie Mom’s language – we still have some oral defensiveness and sensory issues. He is not verbal – However he is communicating AMAZINGLY well through PECS – picture exchange system + sign language + hand leading and gestures. He also appears to be very intelligent and is really crazy about numbers, words the computer and most of all books – the kid cannot pass by the written word without trying to read it. In many ways he is a MUCH more loving child – I have only once before felt this loved and this much a center of someone’s world – it’s a great feeling All in all it rocks to be his mom

However NT kids are making geometric progress at the time when he is making arithmetic progress – know what I mean?- Socially - Rohan is like an 18 month old
90% of the days I am really happy with the way things are – 10% of the time I get bogged down by the demons – which really are – envy of my normal life – the life I was meant to have , (the why me demon), wistfulness and guilt( how simple life used to be before –anything I could have done so we could have stayed on the main road and not taken the detour to Autism – did the vaccinations , antibiotics cause his ASD- was it genetic ).
Truly 90% of the time I am very happy , living in the present and grateful for what Rohan is – I throw away the developmental milestone chart, and look at the way he is developing which really has its own wisdom . I really am growing up and I like who I am turning into!

Posted: Mon Oct 08, 2007 6:08 am Post subject: Speaking of diets : Sensory Diet

Could this really be key?( I am not saying THE key - but just key ) Last month we had had our first meeting with a Floortime consultant in Atlanta - I wrote at length about it on the asd-pddboard so if anyone is interested in the details of it http://www.autism-pdd.net/forum/forum_posts.asp?TID=20066&KW=Floortime Roughly during the evaluation - Rohan was pretty stressed out with new place + no sleep =spend the entire 2 hours stimming Well the psychologist main response was to focus ONLY On sensory diet and singing to him -as an end in intself - not as a means of increasing circles of communication - dont worry about speech or anything else ( her opinion was that the speech is the unfolding of a specific biological process that will eventually come on its own ) I had felt really offended after the consultation _ I felt she had evalutaed R based on the small snapshot of time- and also that she saw only his challenges not his strengths - R CAN be very engaged and loving and is at most times - but I felt like she thought I was making it all up ( I could have been oversensitive ) Yesterday however since his VB folks had come - and he was really stressed out - I wanted to relax him SO I basically had a total Sensory diet and lovey evening ( the other thing that Rohan finds amazingly soothing is spending time alone with him with me giving all my attention to him )

1. Lying in a rocking hammock singing songs and counting the leaves in the tree above us
2. Swing -
3. Another broader swing
4. Singing songs while holding him in a rug ( ie R lies in the rug and me and Nana are holding two corners of the rug each and swaying him in rythm with some songs )
5. Bath time - with lots of water play
6. Songs with Actions
7. Massage
8. More hammock ( this is the inside hammock ) and I basically while swinging him in it will rub my hands on his back ( from outside the hammock )
9. Draggin him through the house while he is lying in a rug

And not just did he LOVE this evening ( keep giggling and signing more ) he also seemed much more engaged and alert Could sensory diet be key ??????

Now you all know we have a lot of trouble getting R to sleep
Last week we bought a hammock and for some reason it + Mozart puts him to sleep really fast - 3 out of the last 4 times I put him in it he went to sleep sooooooo fast
Here is how the hammock is set up ( bought from overstock for $49 + $2,95 Shipping and some hanging stuff from Lowes for a few bucks )
[IMG]http://i3.photobucket.com/albums/y97/rohanmom/July0712-1.jpg[/IMG]
Here is him fast asleep in 5 minutes ( now he had not taken a nap today and was tired and who knows how long he will stay asleep) But still here he is looking so very sweet - my heart would melt
There is something about the swinging motion that regulates him
[IMG]http://i3.photobucket.com/albums/y97/rohanmom/July0713-1.jpg[/IMG]

Funny night
R woke up crying -in the middle of the night and woould not go back to sleep - I tried to nurse and comfort him for the next hour and a half but gave up and went upstairs to sleep - I wonder if he has nightmares -
How I wish he could tell me

Overall this has been the past month
FLOORTIME
First meeting with Floortime consultant - I wrote a detailed post about it - to sum it up Great Expectatons and greater disappointment

ABA /VB

Started with ABLL's - for R's VB program which was also interrupted ( not too despondent about that ) we are just abut handling our 2-3 hours therapy nowadays and not sure whether adding more on is a good idea or not

DAN
Started with OMEGA 3 on Sep 19 - that is about the only DAN thing we are doing now

I feel like my previous post sounds really really despondent- but it really wasnt - well maybe a little
But the truth is that I think I need to back off on the

1. posting on forums
2. looking for magic cures and therapies
3. programming my time
   

I just want to do and I want to be - with R
To enjoy him and savor this time
Truth be told - I am dragging trouble from the future and coloring my present with it
Also I need to Accept and Savor
R has ASD and always will
I love R and always will
He makes me so happy - if only I would let him

Acceptance

I feel like my previous post sounds really really despondent- but it really wasnt - well maybe a little
But the truth is that I think I need to back off on the

1. posting on forums
2. looking for magic cures and therapies
3. programming my time
   

I just want to do and I want to be - with R
To enjoy him and savor this time
Truth be told - I am dragging trouble from the future and coloring my present with it
Also I need to Accept and Savor
R has ASD and always will
I love R and always will
He makes me so happy - if only I would let him

I am worn out
Researching and Evaluating
Finding out the latest
Yes tell me what does that study published in Norway say about Vaccines causing Autism
Of wondering whether Autism is a dreadful monster to be conquered
Or just a way of being
Of trying to remember the last time I heard R say "ish"
Or if any of it really matters
His word for Fish
That I last heard more than three hundred and sixty five days ago
If I had known it was the last time I would hear it
I would have cherished it a little bit more
Remembered that moment and rewound it in my head
Thinking of something bright in response to "How's R doing?"
I say "he is doing great"
And trying to ignore the pregnant pause that follows
Which is filled with the unspoken
Wondering whether progress has been made
Or not
Whether he is on a plateau
Or really just on the verge of a developmental leap
Of trying to stay positive
Because being negative
Takes too much Energy
Which I read yesterday
Is the biggest resource of the mother of a child with Autism
Of wondering if there was anything I could have done to prevent it
I want to just be
Another mother

Well we had our first meeting with a Floortime psychologist – this Dr comes well renowne
Overall it was below my expectations – particularly since we spend just below 500 dollars and drove a total of 400 miles for a 2 hour consultation
We had to drive 200 miles away and stayed over at a friends place the night – I and DH got chatting with these friends and did not sleep till late – net net even R slept at 12.30 am and woke up at 7 am
Then he was not too hungry so he did not eat properly
Plus the Dr’s office was a new place and so

He stimmed stimmed stimmed- ran around aimlessly – he would engage with us when invited but basically wanted to stim and nurse and was stressed out because I did not

While I explained that he was stressed out and the doctor said she would not evaluate him in that from her recommendation was pretty clear that she did evaluate him and probably thought that we were making up all the stories about how engaged and affectionate he is a lot of the times with us

These are the recommendations that we are going to follow through with him:
1. Heavy on Sensory diet- she strongly stressed that R has a Regulatory disorder and that we need to provide lots of sensory stimulus to him – this is different than just using sensory play to build communication – She said sensory stuff is the end in itself for R not the means to an end – this is her primary recco – she said we should be really serious about this like put him in swings 8-10 times a day
2. Sing+ Swim + Sensory : Sing – instead of use language for even everyday stuff - l ike this is the way we take a nap …. Take a nap… take a nap …
3. She also told me not to feel guilty if I could not do enough for him

These are the reccos we are taking with a pinch of salt
1. She was quite disapproving of “drills” (ABA??? )
2. She thought we should not work on Speech right now – just on sensory stuff
3. Continue to nurse as he uses it to regulate himself ( I agree and she is right but I am SOOOOOO sick of it – I would LOVE to wean )

Overall – I was quite disappointed.
The doctor and her office was really nice- she stressed the importance of stressless parenting and also the uselessness of labels – she did not once use the word ASD
but I had higher expectations – From Greenspan’s book I had thought that a DIR consultation would have a much more detailed evaluation of R’s strengths and weaknesses – instead of a snapshot based on a little time in an office.

I felt that she saw R’s weakness and not his strengths—I felt that she saw his as very primitive for some reason I also felt guilted when she told me that I should live in the moment! She is totally right of course but I felt less inspired and less energized – The trip really drained me

I suppose I had expected to come back energized about DOING more with R but I came back less so. DH and I also decided not to go to the November conference -
We are still VERY positive about Floortime. I just feel a little down inside – R is really progressing sloooooooowly and of course I know the importance of staying positive and enjoying him ( which I really do )