Tuesday, September 25, 2007

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

Monday, September 24, 2007

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 )

Floortime Lite Mama

On my life as the mother of an adorable 5 year old with Autism and Apraxia