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 )

Yesterday was a near perfect evening ( again I felt I should do more of course- R & I sang songs I followed his lead to the computer - got him to choose and helped him use the mouse - rough housed a little
the big thing really with FT now for me is DOING IT
The podcasts that I am listening to now are really really helpful as well

Floortime weekend

Sauturday was really really bad with R stimming like crazy
the more attention I give him ht eless he stims but point is sometimes I have other things to do like laundry , taking care of the house etc - In the evening we went for a game hot and miserable - R was a total trooper though!
On Sunday one of my friends came - I was bracing myself to meet her as she has a daughter R's age who is very vocal and very very smart -and her kids were awesome but I realised that R has many awesome things about him too- yes and I am not just TRYING to be positive or something - I really do feel it
Our kids are all such blessings - I am so grateful to God for R - R is just so sweet and affectionate and kissed me so many times - he is able to give me more love - though he may not have the words
And I had some sense of peace and gratitude in the evening and spend a large chunk of it playing with R and just loving on him !WHich is ofcourse super thrilling for him - I was really low energy while outisde and doing my FIRM workout
I need to do MORE floortime
I think I have figured out the nuts and bolts
All I need is to do it


This is my plan for the evening

• Floortime - observe - follow R's lead and build on it
• Encourage verbalisation
• PECS
• Swimming and rough housing

Yesterday was not a particularly stellar day for Floortime
I think I may have only done a serious hour of it - we went to the Mall and R had a great time I think overall - he did no take a nap at Daycare so we basically focussed on keeping him awake till 9 o clock - as the last night he had been up till one
Well you do what you got to do !!!

PLAY Project

I was really upset that no one was watching the CD at home so I just brought it to work and have been watching it on my lunch break!
Its really interesting"

1. We are definitely on the right track in using comfort zone activities and working on opening and closing more circles of commuication BUT WE NEED TO DO MORE !!!!
2. Plus we need to EXPAND the comfort zone
3. Plus a child can fluctuate between several Functional levels like R does - the important thing is the predominant level at which he is at - R is definitely at the joint attention level
4. Another interesting and positive thing I think is that R's comfort zone activities involve other people -his activities are nursing, cuddling, rough house, water play - the no-person involvement thing is really TV
5. I got some great ideas for sensory play - roll in the rug, balance on the ball , swing in a blanket , chase , bubble gum bubbles

ANyway I am just going to try more minutes of what I am already doing today evening and see how it goes !!

Yesterday evening was really nice - R woke up in a good mood and went off to Daycare with no tears
Fingers crossed - I think he is finally settling in with the grandparents - Evening was good as well
We started off with Nursing and Singing with Grandma - Old Mac Donald - R loves this and I have notied that even when we res singing together he will look at granma
We missed certain things - like when I would whisper the words not sing them he would touch my mouth
Today I also discouraged him from hump&*($ - he took it well - when I said No and quickly put his fingers on my mouth to try and shape it to a smile which of course he got
We played Bab Sandwich on the bed
Tickle time and alsoPeeka boo and ROw row row your boat - he just loved it
Then he watched TV with Gran who fed him - she is a master at getting into the show with him
Then we did bath time sang letters songs
Tehn we listened to more music
Then I got the DVD player out to do my exercise video and he remembert hat this was a DVD player and ran in wih the Little Einstein CD and tried to give it to me- I said No and told him this was Mamma's turn
He tried to make a couple of word approximations while we were playing - buh for boy to repeat - good boy and ppppp for Up - Its encouraging and I am trying to not be bitter about how much furhter ahead he would have been in expressing himslef if he was not on the Spectrum

He also handed me the remote several times to turn on Little EInsteins

The last 10 days have been really really bad - I have been in a bit of a bog and have been feeling frustrated that no - one is wanting to watch the CD with me
DH appears to be in slow mode . and R is just busy stimming all the time
Plus its been so hot that even I dont have the motivation and energy to get out of the house and do something with R
its soooooo bad
Anyway I finally got the CD to work today and watched it at lunch and I am plannning to stay at work during lunch everyday till I finish seeing it
And I will also just go ahead and do my routine everyevening
though I feel tired from the inside

Yesterday evening was much better ( bad night R did not sleep toill 1.30 am and also did the deep pressure thing aka totally weird and uncomfortable for me )
The key was doing some of the routine things with him as swinging , singing etc plus also doing some alone time with him - he really needs mommy and me time which is very sweet - all things considered

Sensory Activity R seeks

Specifically these are the activities that R seeks today July 30 - 2007

• Swinging - the more vigorous the better
• Singing - SLOOOOOOOOOOOW- the slow twinkle twinkle is the biggest hit
• Rough housing !and cuddling
• Baby sandwich
• Tickling
• Drinking aerated drinks
• Car journeys
• Being in the Ergo ( baby carrier )

Maybe doing some sensory related things today

The weekend was really really bad
Washing Machine and Dishwasher were not working ( that is the appliances were fine the plumbing was screwed up ) So could not get any work done this weekend - in fact not only could I get no work done - I wasted a TON of time clearing up messes
I was stressed which =R was stressed = he spent all the bloody time stimming and we accomplished very little
Later in the evening we went to the ASA- ETC meeting and R really enjoyed swimming - thought I must get a ball for him later !!
Anyway - R has started lying on our leg or arm and moving from side to side - I think its a new stim and kind of looks obscene so today in the evening I am planning on doing some sensory related things

1. Nursing and Snuggling
2. Up and Down with him sitting on my feet
3. Baby Burrito
4. Sand box
5. Swing
6. Slide
7. Trampoline - funnily enough I fouund that he has learned to jump

I definitely feel like we ave reached a plateau - There could be many reasons

1. last week and the week before that we had minimal ABA ( therapist on vacation)
2. Speech therapist broke leg
3. Visitors at home - so distracted mother

If anything could convince me that intervention is key this is it - now I will have to see how next week goes
I think I really need to step it up with Floortime
First of all I dont think I am really doing it right
Second I dont think I am doing enough
Today evening this is how it went

1. My mom fed him - dinner - spinach and rice while watching Little Einstein
2. Nursed and compliments and connecting with R
3. Went through the KK drive thru
4. Sang a song on our front porch swing
5. Took our activity board and got him to choose activities - and use PECS to ask for More Swinging , ball slide etc
6. Some playing outside -
7. More nursing ( ithink he is really insecure with the parents being here )
8. Then Bath time with loads of games
9. Songs on CD - he asked for more Twinkle Twinkle
10. Then I got on the treadmill and he watched some Blues Clues and ate goldfish crackers
11. Now he is supposed to be sleeping with Dad but I can hear him and its midnight
    

Its definitely a plateau - I need to step it up

Mom and Dad are home

Well yesterday was a pretty poor day for Floortime - my mom and Dad came in from India and we spend the evening getting the house ready , getting dinner done and picking them up from thw airport
Rohan was very very overstimulated
He stimmed like crazy and could not go to sleep - when I scolded him - he cried really heartbreakingly and I felt so bad for being mean - but I was really tired and finally at 1 DH told me to go to the guest bedroom and sleep - so I did but I am still so tired as well
For some reason I was stressed out too and R does a really good job about picking up on my moods
Today I MUST pay more attention to him

Yesterday we did okay
These are the activities I did with R in the evening- Mom and Dad are coming tomorrow so I wanted to clean up and so did not get enough time with him

1. Singing Row row and doing actions with him
2. Swinging
3. Lots of rough housing and kissing and cuddling - doing UUUUUUUUUUUUUUUUUP and Doooooooooooooooooown
4. Used PECS during Bath - he seemed to pay a lot of attention to the Bath Image - play with Alphabets during Bath - he hold up a letter - gives me eye contact and then I sing the Leap Pad Letter song - " The E says eh"
5. Listened to a Song CD

His Psychologist saying that he is still at Level Two has really disturbed me though and it keeps popping in my head

Meeting his Psychologist

Well we met with his Psychologist
For some reason whenever he is with her he is so "Stimmy": I think part of the reason is that we always meet her in the evening after my work and he is desperate to just unwind and nurse!
Yesterday evening honestly was pretty shot in terms of doing anything producive - I was really tired plus I could clearly see R was not really with it - he had had 4 hours of therapy that day and was done
Dr Neece definitely sees him at Level 2 - which is a much lower level than I see him at obviously

Just a news Flash- he had a speech evaluation today !
His Expressive langauage is Absent
R's receptive langue is now at the 2-2.5 year old range which is okay - okay not great - all things considering - so he is about 6 months behind now - he follows 2 step commands now
I need to focus on the important thing which is that he is making progress - butI long for for meaningful language from him
Yes I know the game is about communication and not words - but I long for them nevertheless!Its amazes me that I -who am so into language almost to the point of being pedantic( see what I mean!)- have a child so so like me - who has no words at all
As Kramer says - Mother Nature is a MAAAAAAAAAAAD Scientist

IYesterday night we got through pretty much all the things that we had planned to do except the match picture to object - just did not get around to it
I had a schedule with 5 - 6 PECS and R chose the activity ( swing, ball, puzzle, sing ) and we did the activity - The thing is I am not sure he really gets it - AND I TOTALLY THINK ONCE HE GETS IT IT WILL BE A HUGE STEP FORWARD - this is my question- should we just keep repeating till he gets it or is there something else I need to be doing
Yesterday he did the numbers puzzle really well - he needed help putting in the nubers in the slots
In terms of doing what HE wanted to do we some singing , plenty of rough housing - R lay on the pillow and squirmed in excitement to be a "Baby Sandwich"

Starting today Floortime-Lite

This is going to be my Floor time blog for our son -R
I was planning to start Floortime much more instensively and much sooner and while I have been good about it right from when I first read the wonderful Engaging Autism and also the write up on coping.org
First a little bit about our son - R is 2 years and 8 months and 11 days old. He has no words but expresses a lot of love for us through hugs, cuddles and kisses.
He still nurses and sleeps with us and is a very gentle and sweet child with better manners than most typical kids even
He also fits clearly into the Autism Spectrum

• He has no language - we have started the use of PECS but we dont know if he understands all the images - clearly he knows the picture for Swing :-) . He will also give me the wrapper of Dum Dum and sign "More " which means both "more" and " I want"
• He has no interest in his peers - though he loves other adults like his therapists
• He does a repetitive activity - stimming - he runs around making a hmmmm sound to breaks in patterns ( like say the seam of a sofa) and to moving lines - like the streaming news at the bottom of the screen

Today I am planning on trying an activity Schedule with the following things on the schedule -

• Swing
• Ball
• Bubbles
• Puzzle ( Shapes )
• Sing Songs ( The ever popular Twinkle Twinkle )- I may use some images with these

And a Bath schedule

• Bath
• Wash Hair
• Brush Teeth

we are really trying hard to get the generalise the idea of PECS and I think that if I use PECS everyday then he will get the idea sooner rather than later

The other thing I plan to do if I get the time is testing Rohan to see if he can match images to actual objects - ie a picture of a spoon is an actual spoon!

I will write in the night as to how the evening went