Tuesday, December 30, 2008

I am not in charge :-)

So many of my friends tell me how much Autism has changed their lives and themselves forever. Its made them sadder and full of care
In my life it has had the opposite effect
When I was pregnant I cannot tell you how much care I took .. I researched everything to death .. peeled fruit to avoid pesticides.. never ate any fish raw eggss alcohol ... you name it - i did it
I prayed so hard for a normal child
That is all I wanted- normal
And then I had an autistic child
If there ever was a hint from the universe that I was not in control no matter what I did .. there it was
Suddenly it was in my face .. how fast life can change in an instant
Knowing that you never know what happens the next moment has made me determined to enjoy each moment to its fullest
Life is much more beautiful even when its hard
This has been the gift of autism to me

Saturday, December 27, 2008

its over

I cannot say how sad I am that this vacation is over.
it has been really really blissful - we just came back from our last walk on the beach. I am writing this post on my laptop on the balcony in the simply gorgeous twilight on the sea
Thank you god for this beautiful time and beautiful place
I truly think that this vaction ha sbeen good for R as well .. we have gone into the sea everyday .. he has loved playing in the sand and I think he really loved having us around all the time. Now when he cant see me for a few minutes.. he does not run around franctically looking for me in desperation . but seems so much calmer
I do think he misses therapy and misses his computer ( I dare not let him use the laptop )
The only thing about a seas side vacation that kind of sucks is just how messy it all is - the sand it gets i =n everywhere
And what do I miss about home
The amount of space
My cleaning supplies ( oh how I mss my Dyson )
his 1-2 hours of therapy every day ( that is when I get all my adult time )
Having said that .. I can mournfully admit that I am dreading going back

Friday, December 26, 2008

DAN visit this Monday

So we visited his DAN doctor .. the doc was very happy at the progress that R has been making
He suggested the following
Add TMG and Taurine
Get the urine test re-done to see if mercury has reduced through all the other things or not
i was feeling pretty guilty about not being so good on his multivatamin- he showed us his diagram of the methylation cycle and how the Vitamin C along with Zinc ( in the supplement that we have NOT been giving him )is so good for him
GUILT

Thursday, December 25, 2008

Woe is me

food and sleep still remain our worst battles
Sigh
Enough Said

The sea is the real thing

I am writing this post while sipping coffee sitting by the sea
Its not as amazing as it could be as its a pale pale day and kind of chilly but still ...
its the sea and the sounds of the waves crshing is a treat ( as is this new flavor that Coffemate has launched called Italian Sweet Cream
We had the most amazig OT hour yesterday . R and I dug our heels in the sand and met the waves . The sound of the waves and the feel of the crashing water is such perfect therapy.
All the ballpits, platform swings etc etc are mere substitutes for this-- the real thing!
I was reminded of Bill Stillamn's articles ( here are his archived articles of this handsome man an ASD consultant who writes so beautifully http://www.williamstillman.com/archive.html) - where he says he is sick of parentc complain about how expensive it is to raise austistic child. And how these things like playing in the pool are amazing valuable experinces for our kids

Thursday, December 18, 2008

Unexpected

When we first got a dagnosis of Autism .. everything I read suggested that autism woudl take a terrible toll on my life and that my autistic child would be a burden in every way on me
Yesterday it hit me that in our case the opposite is true for now.
Everything else in my life kind of sucks right now .. ( I need to get my mojo back .. but for right now at this moments - everything kind of sucks )
Everything, except for my autistic son.
At the end of a pretty rotten day that was yesterday - my "handicapped" child's tight hugs and kisses are like balm

Tuesday, December 16, 2008

Let the games begin

.. or restart .
R has started playing word games a little in the bathtub.
Not like he liked them once but at least a little
So rather than making words like "BLUE CLUES" and "NEXT" ( guess who has been handling the remote control - LOL )
we did this yestreday
R- NEXT
ME- TEXT
R NEST
Me PEST
R - YEAH
Me - YEAR
R - made a whiny protesting noise
ME - this is fun isnt it and wrote FUN.. YES
R - NO
okay then LOL
The other idea came from something Padma said on Hyperlexia -- so instead of using PECS all the time or words or signs
I have been asking questions verbally and also writing them down
like on the little whiteboard that we stick on the frig I wrote yesterday
"COME WITH MOM TO MALL?"
YES NO
R smiled and touched YES and also signed YES and said "esss"
how is that for enthusiastic agreement ...
This was such an AHA moment for me

Monday, December 8, 2008

Soothing Rituals

One of the best parts of the day for me are when DH and DS are both asleep and I can peacefully restore order to the house.. wiping , swiffering and windexing ... putting things back .. finding missing puzzle pieces
Every object without its wearer looks so bereft .. that I am sometimes quite maudlin
Anyway these soothing rituals of life are so comforting to me that its little wonder that to me that people with special needs cling to their rituals too

Perfection

One of the things I that I never thought I would hear some one say .. is how strong I am

You see , I am one of those people who cry in sad movies and sad books and are just so over emotional about everything

But the other day a simply perfect friend of mine said we were her inspiration

Now she has perfect everything – perfect house, perfect husband, perfect child.

And she is so wonderful that you just love her in spite of her total awesomeness.

She said she told me that till she knew us she was always scared of having another child- afraid that another child would be less than perfect and she would not be able to deal with it.

But seeing us taking so much joy in being R's parents made her realize that life with a less than perfect child could be beautiful too.

So many people tell us how strong we are .. How we are making lemonade when life hands us lemons

It's a lovely compliment. But I am not sure how much we deserve credit for the positive attitude

You see, to us, our son is quite perfect


 


 

Monday, December 1, 2008

The best place to be in

... is inside your hug
I am away this week and know how true this is
The best place to be is inside your hug
Took this picture last night
R was sooo clingy this weekend ... Its like all weekend he knew I was going away
How he knows ... I do not know
There is a theory of autism called the broken mirror neurons theory -
Example normal people have mirror neurons - so if I see you eat something tasty my mouth will water
Some scientists claim that Autism is caused by broken mirror neurons
Interesting theory
But what puzzles me is R has ACUTE empathy - rather than being oblivious to people - he senses what they are feeling and starts feeling it himself
Like this weekend .. he knew I was leaving Monday - he whimpered and looked downcast most of the weekend and was cling cling cling and today when I opened my suitcase in my hotel .. I realised with a pang that he had put a few of his books in there
It seems to funny to me that while I worried about him turning into an unemotional detached child when we first learned he was Autistic and read the stupid outdated books like "the world of autism"... the reality is quite the opposite

But once I leave he bounces back

Wednesday, November 26, 2008

Wonder ( Natalie Merchant )

I got a lot of messages on the mantra in my previous post
Seek Less... Do more
So I wanted to post one of the biggest sources of inspiration for me
One of my dear friends told me about this song ( she has a darling boy with special needs and knows some of the heartbreak and the joy of this journey )
Here are the lyrics to the song

"Wonder"

Doctors have come from distant cities
Just to see me
Stand over my bed
Disbelieving what they're seeing

They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation

Newspapers ask intimate questions
Want confessions
They reach into my head
To steal the glory of my story

They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way

People see me
I'm a challenge to your balance
I'm over your heads
How I confound you and astound you
To know I must be one of the wonders
Of god's own creation
And as far as you can see you can offer me
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way

[ www.azlyrics.com ]

Monday, November 24, 2008

And something else in November

Did want to add that while R has been having a lot of separation anxiety this month - he is really out of his funk developmentally speaking
And doing really well
The spark and with-it ness is back - the DAN doc had said that we would see a funky period when we started with the enzymes and probiotics and then over time it would go away and be replaced by lots of progress
And so it is
He has learned to use the mouse really well( as in for a just tunred 4 year old with fine motor problems ) - and he will find his websites on the computer ( I know not how ) starfall.com is his favorite one
he truly loves his computer now and we have to work hard to get him off it.
He is doing much better with imitating on songs
And we have the start of pretend play - very primitive but still ....as in he has bein doing things like the head shoulders song with Ernie
He is not making words but can still clearly read
I also got a demonstration of his visual memory when he arranged the letters of the alphabet - by first starting with QRST and then when I put P before Q he went all the way upto A and then when I put U after T, he went all the way to Z
Yesterday again he wrote Z aall the way to A
doign the alphabet backwards is really harder than it looks - try it

What happened in November

I I cannot believe most of November is already gone – Here is what we did

I actually went to the Floortime Conference – the ICDL one in Washington DC – It was amazing and I can honestly say it was worth the time and the money.

As an outcome of that - I also have nixed the idea of traveling up and down from Atlanta to continue meeting with the consultant – I did not get what I wanted from the one we met the first time – and I am not going to run around looking for more.

Its clear to me that I am doing the right things … just not doing them enough

Seek less… do more

October and November have been also the worst for me in terms of work related travel

R is soooo very anxious nowadays – he has always been a total Mama's boy. But right now his mama's boyness has an edge of franticness around it .

Seriously If he cannot see me – like for a minute-he runs around the house just crying and hunting form me desperately – tears rolling down his eyes … Its very stressful to watch.

He does fine- though MIL says he hunts for me a lot when I am actually not there .

For this reason I am terribly tense about a trip I am taking next week for 4 nights . Its sooo hard when your job takes a toll on the one you love so much


 

Wednesday, October 29, 2008

Greenspan wisdon

One of the smartest things I heard in the really nice radio show from Greenspan on "How to Handle stimming" was this
When your child is stressed out and stimmy and retreating within themselves ...go back to the BASICS of Floortime of Shared Attention, Back and Forth Play, Sensory Motor Activities , High Affect pleasurable activities
Whenever we have houseguests - and sometimes for no reason at all - R goes through these stressful stimmy periods
At that time I feel just awful becuase suddenly we are disconnected and I am so busy feeling sad about it that I am paralysed
The mantra in those times is
Back to Floortime Basics

IEP Meeting Oct 2008

Overall I thought it went pretty well. I love his teacher and his OT and the principal of the school is very sweet and genial as well.

They all seem to have high opinion and expectations of him. They will say things like "High functioning" for him. It seems a stretch considering he is not pted yet and does not talk J

But I love having optimistic hopeful people around him (and indeed around us ) . His general sweet affectionate easy going nature garners him a ton of sweet spot with pretty much all his therapists

They all talk about how much he surprises them with all that he knows.

His main challenges remain – the intense stimming –( interestingly I started observing more of why and when R stims and its as much to do with boredom as its to do with stress- prior to actually observing him – I used to think it was all stress related )

Speech Therapy

Increased his speech therapy from 30 to 60 sessions annually (2 times twice a week , 30 minutes each time ).

She would not commit to one on one so it may even end up being 3 on one. The SLP said that this will help her do Speech therapy in a group and encourage pretend play. For a non verbal child- this rationale makes no sense to me whatsoever.

But I do understand the school has very limited resources. The SLP services several schools and is only in his school twice a week. So it did not make much sense insisting on it

Plus he is anyway getting Private Speech therapy 3-4 times a week at home.

Private SLP is POSITVE he has Apraxia. School SLP is also sure but also said that we will not get a diagnosis until school system does it – we need to reconnect on that on April 09

We gave the SLP some ideas on harnessing his ability to read in producing sounds. She was surprised that he knows the sounds of all the letters – ( we were talking about how he once spelled out APPLE – as APEL and Swan as SWON – which really is far more correct phonetically than their real spellings )


 

OT

Increased his OT from 30 – 45 sessions annually (2 session per week for the first half of the school year)

I honestly believe sensory issues are core to everything for R. And this is also one of the things that is next to impossible to get more support for – he does go for 30 minutes to Musical Gymnastics a week but its too far to do more !

Anyway his teacher who I do trust said that they will employ Sensory strategies in class

W e also discussed his new phobia on postural insecurity ( how I wish we had not gone to the circus ).

And how one other phobias have disappeared ( teeth brushing )


 

Other goals

Currently R does not interact with peers at all so some of his goals are to do with that – Turn taking ( thanks L for that idea )

Greet peer by some approximation of name like Huh M ( for Hi Mathew)

Start labeling things

Use more PECS

Attend without stimming ( I also told them that he must have sensory breaks in order to be successful in that )

All in all it was a very good meeting

Saturday, October 18, 2008

This is my life

Life has been very relentless lately
I am traveling so much. Even when I am home things are just so distracted hurried and out of control
Today after a day of non stop work me and some of my collegues were walking back through China Town to our hotel
And suddenly between two tall buildings .. I caught glimpse of the gorgeous Golden Gate Bridge
Suddenly my perspective shifted.
My busy days have beautiful things all around me that I am not drinking in
I keep waiting for some magic days of leisure, freedom and happiness.
They never come you know .. one sort of work is exchanged by another sort of work
But these little pauses of beauty and happiness are aplenty

The much awaited playroom

Well the playroom was finally done last month - I am also adding a pix of the bedroom - The sad thing is that Rohan hates this swing that I bought with so much hope that he would really enjoy it
His gran did all the painting in his playroom
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here is our bedroom ... I was really looking for an English Bed and Breakfast look
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Sunday, September 28, 2008

A Behavioral Conference

Today I attended a conference that was actually local
Nice lady married to and sister of ASD individuals ( 2 separate people )
While factors that contribute to the difficult behaviors are a function of a ASD.
But severity of ASD does not mean severe behaviors – certainly true in the case of R who is fully affected by ASD while still being mild and gentle
All the limitations of ASD are dependent on each other – though the key one is social
Social skills must be taught through some scripts and social stories ( wouldn’t that be hard to do with children with severe language problems like R )
On Stress
She talked a LOT about stress –
When an ASD person experiences stress – all the communication can falls apart as survival instincts kick in
She talked a lot about Stress being sensory related - over stimulated
How Aspies are prone to panic attacks and how the MUST be taught deep breathing techniques ( lie on floor , book on diaphragm book must rise and fall )
Stress can lead to Control freak behavior
On Sensory
Sensory strategies need to be employed carefully – example swinging is great – but may be disorganizing unless followed by deep pressure ( this was a BIG AHA to me ) .
She also said that kids will crave some sensory stuff – sometimes it’s a sign that tells you that sensory diets must be crafted around that- as this activity will help organize them
HOWEVER some times they will crave sensory input that actually will DISORGANIZE them . R’s side roll certainly has turned into a stim that is addictive and disorganizing for him
Sensory Support MUST be reflected in the schedules of the child
As these kids mature – the sensory support for them will look more like what NT’s use to organize themselves
Overstimulation can build up over time – usually the reasons for the mid school year “ regression” in school kids. They would not have this regression if they had had appropriate sensory support throughout the year
Overall most of her focus was on OVERSTIMULATION and its prevention ( wear white clothes, low stimulation house , neutral colors , low voice, no perfume, no bleach etc )
I asked her what about a sensation craver like my son
She said his sleep area should be low stimlation but he could have a play area that was High stimulation
On co diagnosis like ASD+ ADHD or Bipolar
In her opinion it was all plain ASD
On ASD/ADHD
Example - she does not see ASD kids as having a lack of attention – when they are interested they are VERY interested
But she said it was not their lack of attention - but rather their distraction with irrelevant stimulus
So the solution would be to direct their attention to what is relevant
She talked about a boy who would keep losing his way on the way to the bathroom and how the solution was to give him a visual prompt to hold that told him to go to the bathroom
On Bipolar and ASD
Just a manifestation of communication problems
Gave example of child who said that they heard a voice in their head telling them to do something – was simply describing a “thought’
As in the child saw her own thinking process as a voice in her head
Social Stories
Apart from Sensory strategies her main this was visual cues and SOCIAL Stories
Other interesting things
Our job is to not always keep them in their comfort zone . If we do this then their comfort zone will narrow over time and they will become more rigid
We have to widen the comfort zone
She also said that the magic times for a ritual to set is is 2 times – example – if on the ay back from Wal-Mart – you stopped at Mc D’s – on two trips … this will become the rule
The importance of Sleep and food
She said one should look into Neuroacoustics and relaxation CD
Overall she talked a lot about being a behavior detective and figuring out what really caused the behavior – usually bad behavior was the result of overstress and the person being in survival mode
She also talked about t the ASD brain being different
And how many ASD people share characteristics of High IQ people and will not understand the importance of social stuff

Monday, September 22, 2008

Play room

I am so excited about this new playroom that we are making for R

His granma is doing a GREAT job of setting it up with color – of course everything takes twice as long as you would expect

I also bought these items

A mural that acts as a chalkboard and whiteboard

http://www.walldecorshops.com/INPARK.html

A carpet from www.sensoryedge.com

http://www.walldecorshops.com/INPARK.html

and a swing that goes upto 100 pounds

The swing is here but the rest of the stuff is still to come

Hope it looks as good at home as it did on the website

I will post pictures when we are done


 

Friday, September 19, 2008

Stay

We are all sick ( school season officially started I guess ) and I am still feeling happy!

My darling is back – After almost 2 weeks of spaciness his eyes are fully alive again - Gooodness how I missed him!

The "with it look is back in his eyes. Back to giving hugs and kisses generously

Initiating interaction, demanding songs, and hugs. Trying to control his environment –

Making me lie down next to him all the time and not move. Pushing other people away

Searching my face when he asks for something instead of avoiding my eyes

Seeking me out instead of shutting me out

Alert instead of spacey

No one but me noticed that he had come back but then no one but me had noticed he had gone.

Wednesday, September 17, 2008

A change in perspective

So I get these emails today morning and they are undoing the tight knot of anxiety in my stomach. Thank you God and thank you my blog reading friends who supported me

From his SLP wrote today

Just wanted to tell you about R yesterday! He imitated bat, out, and hat perfectly without touch prompts! Yesterday was a little difficult because of his cold, but we got those words! He is such a pleasure to work with. He is a hard worker!

His teacher wrote saying

R has truly made so much progress and is doing well. He is a very smart boy!
These two emails today have cheered me up immensely and are leading me to feel that he does not have a global stress- induced regression but instead at home is probably shutting us out in order to get some space for himself

Woo hoo – I am going to start with Potty training again this evening

Tuesday, September 16, 2008

I miss you

There is just such a HUGE change in him these days L - While there has been a TON going on – we basically moved bedrooms, relatives who adore him are at home 24-7 and want to engage with him a LOT , his toys are all put away as we are building a new playroom – All in all the changes in the past 10 days of his comfort zone has been HUGE and he is showing a LOT of stress

He just is not with it – he does not engage more – most of his communication request for something functional like DUms Dums

I feel like we took a step back in the developmental ladder

So, for example, no more making ME do his ABA routine – like point to dishwasher and look at my face so I say "dishwasher" and do a happy dance when I say it

No more searching my face , looking at my face

A lot of hand leading … a lot of nursing ( again a key indiactor of stress )

Willing to sit on the potty but no longer willing to actually go potty

He is doing fine in therapy and school and nobody else notices the change but me

But I clearly see the difference. It is really breaking my heart

Monday, September 8, 2008

Stimmy days are here again

It makes me very very sad when R is having really stimmy times – he just does not seem like himself. He does not tantrum but just gets stimmy and looks stressed and does not look like he is fully there – I doubt many people would notice the difference but I do.

I hate not feeling fully connected yet don't want to make too strong an effort because it stresses him out even more!

Too much change these past weeks

  1. The remodel – in essence we moved into the new bedroom and his gran moved into the older one as that is the guest room now
  2. Grandma here for a visit – she and his aunt are here for 3 months- they just dote on him and like his my parents and sister love him unconditionally – but its still change and stresses him out!

I started with enzymes on Saturday( Sep 6 )


 

Friday, August 29, 2008

Too much work

I am sick of all the work in my life right now
It feels relentless
Office
Taking care of home and R
Endless feeding and cleaning
Everything getting dirty again in record time
The never ending remodel
I just want to cry

Pureheart! Braveheart!

Today I had to make a business presentation.
I was struck with such a case of stagefright. So paralyzed.

I felt like I would forget all the things that I knew so well.
So afraid that I would disappoint.That people would look down on me and figure out how stupid I really was.

Autism is like an extreme case of stage fright. Faced with a world that can seem so confusing and demanding, a child with autism can retreat within themselves!

Imagine trying to make sense of the spoken word that feels like a foreign language that you are barely comfortable with .Imagine all sensations so overwhelming that you sometimes just have to indulge in repetitive activities and get inside yourself. Food textures that make you gag… smells too strong ….not knowing where your body is at all time in space.

The thought that my little boy deals with that everyday moves me to tears

Pureheart!

Braveheart!

Sweetheart!

Tuesday, August 26, 2008

2nd appointment

Today we went for our second trip to the DAN doctor
Drove down and back in one day - Tiring but not really that tiring and R even did his evening therapy session and in fact did it well and seemed more regulated afterwards
Overall we updated to the doc on progress on the last 3.5 months
1. More aware of surroundings - like now he realizes when the therapists drive up in their car and the bell rings - its means play time is over
2. Hyperlexia is blossoming
3. Little bit more rigidity
4. And most importantly - he has finally started consistently trying to label words lie Buh - for bird
Boo for Book , Ha for hi , all the first soundsof numbers and letters ( except the tough ones like K and G )

The doc was very happy at the progress - he really seems like such a sweetie
Overall these are our next steps
Again need to get on with the Gut Healing process -
the lab tests show evidence of Yeast overgrowth and also of a strong Gluten/Wheat intolerance

Get on a GF diet - C should be reduces too but not dramatically !!!( 4 day rotation - yikes he has pizza about 3-4 times a week )
Start with Probiotics 1/2 each morning with minimum food
If all goes well in 2 weeks
Start with enzymes ( start with once a day and then go three times a day each time with meals 1/2 capsule each time )Enzymes and Probiotics should never give together as they will digest each other
After about 5 - 6 weeks
we should get a prescription for Diflucan - for 2 weeks followed by 3-4 weeks of Nystatin
I also asked him about any natural or gentle chelators
all this while the mercury is in the system and it cannot begood for him
He talked about Chelorex or Zeolite

Friday, August 22, 2008

We are more alike than different

Home remodeling going on and I physically feel drained all the time!
I am not even doing much work on it- DH is pretty much doing it
And I still feel tired and drained from it
DH said yesterday - and he is right - that I feel unsettled because of all the change.
We got to discussing that Neurotypical humans have so many Autistic traits!
I have felt this about people from different cultures - all humans have the same emotions - the difference is in how much of the trait we have or how much of it we express
I think the same may be true of Autistic people
Example:
Change is stressful for all
But is debilitatingly stressful for Auties
Sameness is attractive
Not in itself
But as its one less thing to cope with!
Which is probably one of the reasons why numbers and letters are such big hits with so many auties - they stay the same in a bewilderingly changing world !
The DS society's slogan is so true for Auties
We are more alike than different

Monday, August 18, 2008

Looking more and more different ... and that is okay

Yesterday we were at a friends cookout and really had a good time 3 other couple were there with a total of 3 amazing Neurotypical kids
Everybody was extremely nice and went out of there way to make R feel comfortable and included
SO many of our friends and their freinds are such nice people
Well R looked soooo different from the other kids - As it was a new situation he was so stimmy - he would flap his arms at the swing and just make all these odd grimaces
He always does this when he is stressed
But he was totally well mannered did not bother anybody and after a while I took him to their playroom where he got totally relaxed after playing in a LARGE room with just me and a lot of books about numbers
And then by the time it was time to leave - R did not want to go home at all
Anyway there were a few things that I learned
New places stress R out but that is Just all the more reason to go to new places
1. A little time away from the group in a group helps R deal better with the group
2. Maybe I should have prepared him a little ( picture schedule ?)
3. I am so proud of myself for not getting too antsy about how odd we looked
4.DH rocks - he is just so relaxed - when we came back I asked him if he felt awkward about the stimminess - he replied "It was their little girl right"
He ACTUALLY DID NOT EVEN NOTICE R stimming and in fact noticed that one of the other kids was going cheeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeese cheeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeese on the swings. DH's general attitude in life is "I'm Okay " and I just soooo love it
5. Another reason my DH rocks is that he will probably keep dropping R to school on most days - so that R does not spend 75 minutes on the bus each morning

Wednesday, August 13, 2008

A few of R's Favorite things

Here are some more of R's favorite things
Have I mentioned he loves letters and numbers
Letters and words he is kind of bored with now you will see a couple of letters from the second line haave been taken to make the first word - his name
- numbers are the current passion
Here is what he wrote on his board a couple of weeks ago
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His other favorite things right now are
The measuring tape ( numbers on both sides )
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The calender ( NUmbers AND days of the week - made dear to him by the "TMBG" song - on Monday I'm never gonna work ) - here is R reading the claender just like DH reads the newspaper sometimes in hotels at breakfasts

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More number madness
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One totally different things is flowers and fruits - he adores the tomatoes that DH is growing - if I pluck one he wants me to put it back ( on his feet you will see the measuring tape as it muyst go everywhere with him now )
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Tuesday, August 12, 2008

A few of R's favorite things


One of the nicest things about using your child's interesting is you really understand what he loves and why
Here is R running with a broken plastic Margarita glass - he loves to look at things through this glass

Go to sleep please

OMG - R's sleeping really sucks these days He went to sleep at 11 and is up at 5 am
He has 2 hours of ABA and school today ( first day of school in fact )
As we cosleep this is putting everybody in a VERY bad mood - for both DH and me - the sleep and eating pickiness - bother us the hardest
I think I am going to buckle down and get some Melatonin

Monday, August 11, 2008

School Bus Woes

Yesterday the school bus lady acalled to say that she will be here 1 hour and 15 minutes before start of school
it is RIDICULOUS - a 3 year old basically having to spend 2.5 hours in the bus every day !!!
She was actually even quite "put upon"when I hinted- okay said - that 1 hour 15 minutes was too much
Luckily DH is dropping him the first week by which time I hope they will have figured out their schedule or something
I am spitting mad
One funny thing - I called her 10 minutes later to tell her DH will be dropping R the first week And she acted like she had never spoken to me before
LOL

Friday, August 8, 2008

Can I just say I love his school - I wish they would have it year and week around and they had the school extending school all the way to
HIs teacher and TA were here - they are so nice and sweet and supportive
I need to note the regression for ESY next year
He basically regressed during the summer for eating and also increased sensory issues - lots more stimming
Over the summer ( we started the DAN stuff in May )
he started vocalizing and pointing - he points all day - when he watvhes a DVD he wants to go to a Pick a Song option so he can choose EXACTLY the song he wants - I really thing this is his way of exercising control - I like it as well as we are opening and closing circles of communication while doing something he LOVES
But became MORE picky with food and slightly more rigid as well and more difficult to transition
I truly do NOT Think that this last thing is a bad thing ( increase in awareness, knowledge that he has some control , testing limits - all these are really good and healthy things in my opinion )


-

Nada but fun

I did no work with R yesterday - just housework , ironed a basket of clothes , made dinner - did my fly lady routine -
When I go to bed - the house looks sooo picked up now guys -( until R drops flashcards and thing with numbers written over them all over the house - this his thing - he loves all these educational toys - while I long for him to play with a doll )
However - I think I still spend a LOT of time doing housework - nothing like the 3 hours per week the Flylady promises - I would say 1 hours every day
We saw a horrible movie completing our series of watching movies that are horribly depressing or bad
10,000 BC ( VERY bad )
The Myth ( VERY bad apart from a glue fight that was the classic funny Jackie Chan, the rest of it was all very very bad , levitating people ,tombraiders and nonsence )
Atonement ( good but kind of tlike the English Patient - very depressing )
I am Legend )( nice but depressing )
Jaane tu ya jaane na ( boring )
Juno and Casino Royale are the only decent movies we have watched in the past few month
Please dont despise me for Casino Royale - I love James Bond - yes even when does crazy things like reviivng his dead heart himself :-) with just a little help - I miss Pierce Brosnan though
If you are wondering why were are watchng so many movies its becasue our rewards programs reward us with Blockbuster coupons so I can waste what little free time I have watching crap

Wednesday, August 6, 2008

We are the way we drive

It occured to me on my way to work this week that DH and I think about Autism treatments in the same way we drive
Me anxious that I will miss an exit that I need to take
DH driving along effortlessly - sure he will get there eventually

Tuesday, August 5, 2008

Recovery

ttp://www.ucdmc.ucdavis.edu/mindinstitute/events/dls_recorded_events.html
Hmmm _ I am wary but interested oin recovery stories -
just makes me wonder if its the really milder kids diagnosed with ASD after the expansion of criteria who recover
The speaker was Deborah Fein - very knowledgable and engaging
Anyway the recovered kids certainly did not sound like R
Rapid rate of progress between age of 2 and 4 was one of the man characteristics of these recovered kids
While R is making progress- for which I am very very grateful - I certainly would not call it rapid/accelereated or any of those terms
DH claims that if only R had language his issues would be minimal
I see the Sensory issues- his need for stimming as just as huge a barrier as language is
His relatability is coming along well - with all but his peers
Though I do think one should teach that part last
Something worse than watch your child be a loner would be
To know that your child desperately wanted friends but that they did not want him


Monday, August 4, 2008

If I m ay say so myself

Pretty excellent parent therapy evening ( if I may say so myself )
Just lots of games of tickle and chase - swinging in the hammock
Lunch at Apple bees was such a disaster today with R just being so stimmy( stemmy I should say - that is the way his therapists spell it and it always makes me feel ike he is sprouting branches or something) and not wanting to eat and the evening was so brilliant
Its amazing how in the same day he can have such a diffent level of with-it-ness
While its close to midnight I am particularly feeling like a grand success as I waited till he fell asleep and then cut his nails - I had to wait till 11.30 to do that
( This is less an act of great maternal care ... more like self defence - r loves to give me ticght hugs and squeeze my cheeks in joy which can really hurt )

Wednesday, July 30, 2008

Not doing enough

My inner monster that tells me I am notdoingenough is alive and flourishing
I fed him well last night with guilt and insomania - the other truth is I am spending a load of time on the internet and also am watching some TV
for the past two days I have really done a rotten job in the evening of having some meaningful interaction
Here are my excuses
  1. Too bloody hot and muggy outside ( I suppose I could do things inside)
  2. R just wants to swing and he will usually fall asleep if I swing him and then wake up BAD tempered and grumpy -And then he will not sleep half the night ( avoid the swing - what about swinging after battime at 9 with some citronella???- Hmmm there is an idea )
  3. With no sleep in the night and a 6 am wake up time I am usually tired too ( sleep on time )
  4. With R at home all day the house is a real mess( I guess I could screw the mess and ignore it - which as I am a flylady right now is Impossible to do )

Sunday, July 27, 2008

Not normal ..just perfect

I suddenly realized today why moms of older kids on the spectrum look a little resigned - not necessarily sad - but as though they are bracing themselves
As R gets older - in another 100 or so days( that sounds better than 3 months doesn't it ?) he will be 4 years old - I am more and more certain that we wont be one of those indistinguishable ones.
Soon people will stop telling me "oh he is still so young"
I am really not dreaming of Mainstream schooling. I do think I will have to read up on Special Ed laws. We have even talked about homeschooling at some point becasue I dont think that either Dh or I have a particular aptitude for fighting with the school system - nor do we really want to
You can wrangle out 30 more minutes of services but if they dont already ... can you get them to care
Dont think however that I am too despondent .
He HAS learned a lot
And sometimes I also think that while he may not be normal but he is still quite perfect just the way he is

Friday, July 25, 2008

Repeat of day before yesterday
No therapist today either
Weather was atleast better than yesterday

Thursday, July 24, 2008

OUr therapist called in sick last evening
And why does it always have to be last minute - like at the time she is supposed to come -
At 6 which is the therapy time she will realise that she is sick !!!!
Basically what it tells me is that she forgot or does not feel like it !
Why not give some advance notice
- it always discombobulates me when they do that as it puts more pressure on me to make the evening productive for R and also usually I do my stuff while the therapist is here - like finish up dinner or hop on the treadmill
I did some follow the lead with him and went and swung with him etc and then when he took a bath I cleaned up the house and made some dinner

Wednesday, July 23, 2008

The joy of pointing

My son can point!
OMG
What joy !
He used to point in order to answer qyuestions in his VBA but now he points to tell me what to do !!
Like today I went home for lunch -
When he saw me through the window - where he was sitting on the couch he started bouncing up and down -
I put my hands on the window - so he would put his hands on from the other side
But
He pointed to me - and then pointed to the door
You ! Get in the door !!!
My cup of happiness runneth over
Thank you god

Parent Therapy

oh yes and I meant to write about what we did last evening
Flashcards from Bumble bee - Tried to get him to pronounce the beginning sounds of all the words
Rough housing and tickling
Walking and swinging ourside - following the lead with that

Mischief

Stimminess in the evening ( due to cheese Quesadilla in the afternoon?)
He was so cute last night - I was tickling and he was running away and hiding behind his Dad giggling away and then coming back for more tickles
- Then in the night - I had turned some sleepy music on and he thought I was asleep so he ran giggling to the boom box and took the CD out and came back to bed hugging me tight and literally shaking with silent laughter
He is such a delight - he has never hidden behind his Dad before like that and he has not been deliberately mischievious ever
In the evening when we were taking a walk and encountened MRs H and Mrs C who are soooo sweet and very nice to him always he looked around them with unseeing eyes and refuse to ackknowledge their presence - let alone say his prompted Hi

Tuesday, July 22, 2008

No dairy and wanted to say Simminess is still down - Fingers crossed

Monday, July 21, 2008

Love affair with FOUR

I just realised why DS loves the word FOUR - he writes this with Foam letters on the side of the bathtub - he was touching each letter and then looking at me expectantly
I thought he wanted me to sound out the words Phoneteically - then he startted touching the letters with the number of fingers
one finger on F
two fingers in O
etc
And then I realised
PERFECT symmetry
A four letter word that means FOUR
Its the only one that does that
Learned something new today
When I went home for lunch DH said he was far less stimmy than yesterday
- no cheese today so far - but its not like he has cheese for breakfast on the other days either
But it was really nice to see him calm and collected rather than simmy and disoriented

Sunday, July 20, 2008

Is Dairy the evil

R has been so stimmy these days- lots of odd expressions and hand flapping !!!!
I wonder why the great leap we saw the first two weeks have reduced a little
The vocalizations are still there - in addition - we are getting a lot of accurate pointing 0- pointing to a thing to want it
But the general "with-it"ness is much less
And the stiminess is much more
Anyway we have also been giving him Pizza a lot these past few weeks- that too with oduble cheese and turns out that Dr Neubrander recommends not to do that
We will try stopping that ( no t eliminating dairy ) but reducing double cheese
And I will record if there is any change in behavior

Friday, July 18, 2008

Where is he at right now

A friend asked this on a message board and I think its a good thing to keep
so here is my own progress report on R
Language
Not really verbal - However receptive language has come a LONG way - and we can no longer talk or spell in front of him He will request several items by their first syllables like Duh Duh for Dum Dums or Bu for Blues Clues or Sheeee for Sleep things like that 2.
Potty training
Sporadic efforts and very sporadic progress- He will pee on the small potty though
Fine motor skills
Have not notices
Developmental Leaps
RIght after we started MB 12 I noticed a substantial increase in vocalizations but after that its been a plateau - one big change I have noticed is that he now frequently points correctly to ask for things etc
Regression
Great increase in stimminess post startting probiotics and enzymes - stopped them
Favorite pastimes
Snuggling and rough housing, Swinging, Watching DVD's Musicals like Blues CLues and Moo Shoo and Listening to "They May be Giants" making up words on word whammer, playing with numbers and alphabet, carries around geeky things like woooden numbers, the rubiks cube ( I guess the squareness or the colors ) and foam alphabets

Wednesday, July 16, 2008

Cleaning the house

BTW - I am doing a GREAT job with Fly Lady - the house looks AWESOME - I got rid of some clutter and I am continuing to declutter
I was already doing menu planning and shopping and cooking for the week ( DH does all the shoppping - thank goodness - its one thing that I truly loathe )
The other things that are really helping are the evening routines of blessing the house
- I spend about 5 minutes straightening up each room - blessing each room as Fly lady would say !
and it really looks clean and pretty !
I still have a ways to go though
The other thing that has happenned is that I have no desire to acquire things any more - which is really amazing too
I am crossing my fingers so I don’t jinx myself when I say this - I have started putting my nightgown on R like a cover when I wake up in the morning this is one great trick DIdi taught me and becasue of that he assumes I am there and so goes on sleeping for a long time and wakes up refreshed
His sense of smell is very strong
Yesterday he wrote the word – “TAPER( E) D” and “CARPET(E)D”
I was wondering where he read these words till the mystery was solved – DH has been keeping a book on “Home Improvements” around – this book has 1-2-3 in its title and is therefore of great interest to R
Yesterday they went to the swimming pool and really enjoyed themselves

Sunday, July 13, 2008

One of the great things about our team of VB people is that 
they all truly seem to beleive that R is very smart 
they genuinely care about him
they all beleive that we should not get more hours of ABA for him - they all say an hour a day is more than enough  

Wednesday, July 9, 2008

Sleep

Just continues to be a PITA
WHen DS seelps at a decent hour like 9 - he is up at 5 - which would be fine - except he is groggy in his VB session in the evening
( of course I dont like getting up at 5 am either becasue its rare when I can get to sleep before 12 )
And then I am groggy all day
Yes I know I should go to bed earlier
But there is always so much to do !
Play with Rohan all evening and then do other work things in the house
For instance yesterday
  1. When he was in VB - I cleaned the car
  2. Then after he went to bed at 9.30 - I tossed 27 things away ( fly lady )
  3. Shined the kitchen sink
  4. Emtied dishwasher and cleared up kitchen
  5. Cleared one cupboard and sorted out a few drawers of clothes
Why is the house so dirty these days ?
Why do I spend all my evenings in housework ?

Tuesday, July 8, 2008

Letting Baby Grow up

Lately I have been wondering
Are we holding DS back - Our BCBA was doing the ABLL's with us last Tuesday and we realised how woefully inadequate WE have been in teaching DS life skills- Potty training , feeding skills , dressing skills - you name it - we fail it
In front o f the BCBA we excused this with our cultural difference ( we grew up in India and in India kids are babies into adulthood )
But lately I have been wondering if I actually baby DS in my mind so I can think of him as a baby and then he does not seem so behind in his social stuff
I decided to start with the words and no longer use the term "Baby" with him ( like in the way of cooing nonsense to him - who is Mumma's baby love)
I am struck by how hard it is
First I used to use it a lot - I mean a LOT. And then on top of that I feel disconnected to him - as though I have severed something precious in our relationship
He is still the child that wails outside the bathroom when I am inside
Who pulls me to the sofa for nursies as soon as he sees me
But he is no longer my baby
Which is as it should be
It makes me very sad


The past 3 weeks

Have not been very good - I have been sick with an allergic reaction to Poison Ivy and DH has had minor surgery - My sister and niece have left and DS is on a definite plateau
Its a plateau and I know plateaus will eventually lead to a step forward but Platues are definitely discouraging
Also he has been stimming quite a lot and quite noisily
On the plus side with family gone - I can agian focus fully and completely on DS - which I had missed doing
I am reading Sink Reflections - the house is full of Clutter and I am really getting quite sick of it - I need to take a few bags to Goodwill and clear out some stuff BEFORE Ma gets here in September as she( like DH ) hates to give away stuff- in case we need it some day

Tuesday, June 17, 2008

DAN doctor send an email to say that we should discontinue for a while and then start bit by bit at a time
Can you beleive an MD that actually responds to your email directly !
And in a few hours !!!
I cannot help but think that the stimminess and badtemperedness this last week is related to starting the ENzymes and probiotics - In fact even his therapist commented on it in yesterday's session
I googled it and turns out that enzynes etc CAN cause problems due to positive reasons
but also the ENZYMES AND PROBIOITCS SHOULD NEVER BE GIVEN TOGETHER BECASUE THE ENZYMES DIGEST THE PROBIOTICS
I wish our DAN doctor had told us about this

Monday, June 16, 2008

Sometimes I hide

Today I actually went home for lunch early so as to avoid R
He has been such a ROYAL pain all the weekend - cling cling cling and constant demand for nursing insterspersed with whining.
And the not letting me cut his nails - what a pain that was - I finally was so happy when he was asleep and I could finally cut his nails
He is allergic to something as well - what I do not know but his eyes swell up and he itches them a lot and the itching goes down wtiuth Benadryl

Saturday, June 14, 2008

Hyperlexia game in the bathtub yesterday night
at bathtime with foam letters - I was trying to do this just to do some
tuen taking but it can also be used as a communication game I found


R - TAPE, MUD, SKY

Me - Lets play game - B-O-Y

R- B-Y-E

Me - A-M-A-ZE

R A-S-K

Me - N-O-S-E

R- P-O-S-E

Me - B-O-Y

R - B-E-D( he has been making signs to show that he wants to go to
bed - not so sleep unfortunately but because he wants to lie down with
me and nurse and snuggle)
Me - N-O ( he still had to get lotion and PJ's on )

R - N-O-T-E

Game R I think !

Very Happy

It really impressed me that he could figure out the pattern - use some letters of the word made earlier to make a new word - and respond accordingl

Thursday, June 12, 2008

So sensitive

Something bad happened yesterday – a small accident really but my poor baby is so traumatized – gosh how I wish he was not so sensitive !

He has been carrying around his anxiety and embarrassment all evening and all morning – I wonder what to do – how to distract him -

It always makes me laugh when they try to say that auties have no feelings- if anything they are more sensitive

No- actually it makes me angry - sometimes the parents of auties will talk about their kids in front of them- sometimes on national TV -the way they would never talk about an NT kid

Wednesday, June 11, 2008

Should he be on the bus or not ?

Well the little Special Ed bus can come to our house now and will be picking up R about 8.30 everyday . Today DH dropped him – and of course today was the day that R decided that he would get up extra early – like at 6 am – Uggg – he wlill be sleepy and tired for his VB session in the evening and then through the swimming as well

Why does he not sleep like clockwork from 9 in the night to 7.30 in the morning – that would be just perfect – he would get enough sleep and I would not be stressed out either

Sigh!!!!!!!!!!!!!!!!!!!!!!!

Tuesday, June 10, 2008

Back from a hectic 3 day trip

And he was just a total angel for all 3 days - except for the last two nights where he did not sleep till past midnight and was just hyper
School starts today and kind of early too at 9 am ( embaressed to admit that that is really early for us ) as R like to sleep late and wake up late

Monday, June 2, 2008

SUPER cranky today for his therapy sessions

Is it a bad thing or a good thing

After all these months in Autism land - I realize how much of the energy is around whether Autism is a good thing or a bad thing - really the truth is it does not matter
All that is important that we give our kiddos all they need to be the best that they can be
Yet I spend so much time worrying about IF autism is a bad thing then did I do anything to cause it

DH's perspective is that DS's situation is a result of
  1. Autism as a way of being -part of human evolution ( as a way society is evolving where social networks are maybe less important and cortical rational thinking is the new skill )
  2. + Mercury poisoning - a separate issue
Its an intersting perspective really
DS had his 5th or 6th Cranial Sac session today - Something does seem to working becasue he seems calmer and more organized with the MB 12 - we have done almost 5 of them so far and Cranial Sac therapy
As school is out and I have been doing really bad parenting - back to the distracted kissing and cuddling type parenting rather than the efficient conscientous floor time parent
Plus other circumstances are there in this small fry's life which are usually bad
- school is out, therapists have been cancelling, visitors ( this last thing may actually be helping) + distracted parenting that I mentioned earlier
Anyway so far something seems to be working
Though everything is very very slow

Sunday, June 1, 2008

Fun in the pool = cold next day

Waaaaaaaaaah it really sucks
all of us are so very very snotty today
Well such is life

M-O- M

Something cute today - I suddenly felt something on my backside while cooking - R had been trying to get my attention but I was busy ( today is cooking day for the week )
Well he had been saying MMMMMM for a while ( trying to say Mama) but failing that - he bough the three letters from the word whammer and spelled M-O-M on my backside
Yesterday in the bathtub he spelled out L-O -V-E with the foam letters.
He is an enchanting child

Thursday, May 29, 2008

Lo and Behold

Just as I was thinking about how much more focused he has seemed lately he was Mr Stim Central at Applebee's today at lunch - probably becasue he has never been there before
Anyway it was odd to see him so stimmy again

We are doing much less

with him these days - he watched a lot of TV over the past few days honestly
I dont know if its the MB 12 injections or having my niece and sister here but he actually is very focussed and alert
We need to do a better job of giving the injections though - the past fews days he has srtirred and little and I think its becasue we are putting the injection on the less fatty part

Tuesday, May 20, 2008

Hyperlexia

In the bathtub yesterday I saw this with the foam letters
W
MAKE
B
"Make" that can also be "wake" and "bake" - the first puzzle
On the floor yesterday I saw written out in blocks H O P E
And the O P E N
What a nice cheerful disposition this 3 year old has ( to hear him whine you would not think so )
In his word whammer ( only has places for 3 letters ) and he wanted to make C --L-O-C- K but he could not so he thought for a little bit and spelled out C-L -K
Great problem solving - no ?

Monday, May 19, 2008

On love

My sister and niece are coming tomorrow - I am so excited I can hardly stand it
Also nervous !
R never likes new people - especially new people who monopolize mom - he is astonishingly possesive of Me
to bask in the glow of this most precious child's- is bliss It gives him some control - as I love him back madly too - and so he is not so dependant on others opinion of him - I cringe when I think of a possible future when not only will people see him as different - but their perception will matter to him
But I will worry about that a little later
Today's worry is simply - what will he feel tomorrow ?

There is a ghost in my house

Both DH and I swear there is - Its a mischeivous ghost rather than a mean or cruel one
Things Keep getting lost and then found right in front of our eyes - yesterday after days of looking for Rohan's glasses we found them lying on the floor next to the bed
And the floor has been vaccummed and we have been using the room regularly

First week of MB 12

Just wanted to add that after MB 12 injection 2 - I really am not noticing any other changes
the only big change this week is more correct and acccurate vocalizations
Even while watching the Bumble bee DVD'd R was trying to imitate the sounds - which I have never seen before - again there is no way to know if this is becasue of the MB 12 shots or becasue of something else
Yesterday evening he feel asleep on my lap and slept for a long time in the afternoon and was so amazingly relaxed and with it all evening
Sleep may be the best biomedical intervention there is
The Kirkman supplement is a B$%^& to give too

Saturday, May 17, 2008

General Distracted day - lousy Saturday

Today other things happened that are making me distracted and quite upset - I have to see the doctor on Monday - Horribly stressed about this 
And as a result R is very distracted too 
Have I mentioned before how alarmingly sensitive he is to my moods 
At 3.5 he still sleeps with us - Today we got out his toddler bed  and attached it to our bed 
We are hoping this will help him start to sleep in his own area of the bed  if not his own bed 
As a further enticement we got a quilt cover that has the print of numbers all over- from IKEA 
I plan that he will sleep on top of the quilt ( the mattress seems really hard by itself ) hopefully the quilt on top of it will make it soft 
We also ( finally) put all our winter clothes away - between this and getting the closet  emptied in the guest room - I am more exhausted than I can say - My sister and niece are coming on TUesday - I am soo excited though the medical stress is really really upsetting me 
And the week's cooking is still left !!!!
Hausfrau weekends are EXHAUSTING 



Wednesday, May 14, 2008

One last thing Edited to add the Evening

Edited to add about the evening His therapy notes today evening are Mostly no;s escape and avoidance , however did very well with vocalization - - tightening body but not full stemming - When singing song I paused and gave him time to vocalize and he did His theropy notes from Yesterday Evening are - Lots of escape behavior lots of no's Tried to sleep Productive on sounds after many prompts no spontaneous sounds - a lot of babbling So really not much difference except increased vocalization - we got a frequency counter and he had 93 vocalizations compared to yesterday at 53
My overall observations of the evening are as follows The start of the evening with me which is mostly snuggle time and cuddle time went well - which it always does by the way - I think this is one of Rand my favorite times of the dat and involves a lot of kisses and compliments and playing will pillows Post therapy I notice he did not need the 30 minuets stim time he usually does but quite purposefully dragged me around to swing him on the different swings and for a change did not fall asleep on the swing as he usually does . Overall I would say there was a subtle improvement compared to yesterday but it could also be because he slept well last night






DH called me to say that when he went to school R was crying because he was the last kid to be picked up
His teacher wqas surprised becasue R has never shown that awareness before ( all the other kids have left but me - waaaaaah ) - just an interetsing random incident

Pre and post first MB 12 shot

Well I went home at lunch today and read the therapist notes from this morning ( she does not know when we are starting with MB 12 shots ) 
This morning - post shot May 14  10 am - Had some extinction avoidance behavior , but very talkative, spontaneous manding talking more 
Yesterday morning-preshot - May 13 10 am - Had some extinction today, at times not wanting to work , but also had a lot of  chest congestion and coughing 

First MB 12 shot

Yesterday night we gave R the first MB12 injection - as promised by the doctor - he actually slept through it rather than wake up crying in pain - what a relief !!!!
Today morning I called DH from work and DH says that R today mornin g seems remarkably relaxed and calm and happy - When I go back home I will see his theraist notes - We are not telling the therapists about the DAN treatements to get an unbiased perspective
I was so emotional before DH hgave the shot - that evening we had gone to the first Autsim Speaks meeting - they basically came to town to see if there was any interest in their organisation
Well I had only one hour as this was also DH's golf day - so the one horr while R's therapist was at home with him was bisacially the hour I had - but it was only 15 minutes away - this is a really small town - and I wanted to show support to this group - And went anways - As I drove into the parking lot i felt tears fill up my eyes as I saw that the HUGE parking lot in this SMALL town was full - I had to parallel park on a side and there were still cars pouring in
You always hear the word epidemic but yesterday I saw it. And it made me very sad.
So many children so few services

Monday, May 12, 2008

We did a bunch of lab tests ordered by our DAN doctor Comprehensive Metabolic Panel, CBC with Diff, Cholesterol, TSH, Iron, copper ZInc Everything has come back normal ( we can check online in this awesome Doctor's office )
Does this mean we should not start with all the supplements that we brought with us?
Basicallty that biomedical will not help us ?
HIs mercury is very very very high though ( French lab shows Remarkable mercury toxicity )

Tuesday, May 6, 2008

First Dan visit

DAN Visit
Overall pretty decent visit – Sweeter nicer kinder doctor than our ped – let R play with his computer – and R somehow took a liking to him and sat on his lap and kissed him.
The doctor definitely had all the qualities of the good DAN doctor – had ASD child+ no promise of cure + board certified MD with a regular practice+ no pushing things from his pharmacy- we did eventually buy some of the supplements from there and they are actually the same price as the company website and we saved on shipping + he wanted test results to define our next steps.
Definitely did not feel like a snake oil
Protocol
Roughly the protocol is
Heal the gut
Give the body the extra things it needs to restore the healthy methylation process and encourage the production of Glutathione
Help body get rid of some of its harmful stuff
Our next steps
He did make a comment that the comment from the lab results which says “Remarkable Mercury toxicity” was unusual and this was the very very high – most of his patients who get the test done get “Mild “ or Moderate “ in their results .BTW I have also researched on the high false positives and there are some other markers in the test like a high creatinine level which would lead to false positives – in our case the creatinine level was fine.
The next two steps for us are
First, heal the gut – We got Digestive Enzymes and Probiotics
I did explain that R has minimal gut issues currently.
However he had had a phase of gut issues between 15 – 18 months when he had 6 rounds of antibiotics ad 6 ear infections in those 3 months- Interestingly this is also when his ASD developed – the videos I talked about the other day – before and after at 15 months and 18 months show really a different child (with markers of some abnormal development like not much developing speech – 4-5 words and no pointing even before that )
He asked us about GF CF and I said we had tried it and had stopped our trial after 3 months of basically no change when we stopped !- He did get us to do some blood draws
Second – give the body Extra things it needs – we got the Super Nu thera ( mega vitamins) and he had already send us the Methyl B 12 shots so we will be starting them soon
Step 3 – Remove the bad stuff – we are not there yet While we are not starting chelation now – I am doing some homemade stuff to hep R– Vitamin C and Cilantro ( the herb that a lot of Indians use to garnish – looks like Parsley )
Where I am mentally
Really I am not expecting any wonders /cures –I really don’t know what to expect – The CF GF diet which is huge for many AS kids did nothing for us . As of now my main worry is how to get this stuff inside him
I do know that we HAVE to explore this path or I know I will be regretting it later

Wednesday, April 23, 2008

The MethylB12 shots are waiting for me in the refrigerator and I am too scared to give them :-(

Thursday, April 17, 2008

To DAN or not to DAN

I think we are going to try this out -its been coming up again and again and now with R's mercury toxic results we really cannot keep thiniking that his ASD is a way of being which needs acceptance ( not detoxification ) its a really hard road for me to to down - to think that our 3 year old will have to ave injections and chelations and all that so scarybut I am scared of mecury even more
We will be driving down in 2 weeks to Frianklin, TN about a couple of hours away to start this
I am scared but also keeping an open mind and hopeful at the same time

Thursday, April 3, 2008

Pretend Play

Some of the coins are dropping which brings me to three of the mantras of Autism

Repeat - Repeat and repeat - Many things will need more than one trial - heck more than 100 tries
Many times when they seem like they are not "getting something" - they actually are - and it will come out another day - never give up
Stimmy periods atleast in R's case seem to be necessary to him - so instead of getting overwhelmed by the stimminess its important to realise that stimming is his coping skill and one should think of it as "Self regulation" and not as "Self Stimulation"

I have swithced brands of his soap and lotion to natural Burt's Bees stuff

I think we are seeing the beginning of Pretend Play -
  1. He put his toy phone on my ear - and he has finally understood what a phone is for
  2. He pretended that the stem of his Littlep people Umbrella was a straw andd drank out if it ( it totally could be that he was thinking it was a real straw)
  3. He also played with Leo and June figures and kised them and did Head Shourlders knees and toes with June
- as usual a step forward was preceded by a period of a week 10 days of a more stimmy R ( of course it could also be all the changes - I was out of town for 5 nights - he changed classes and is now in a classroom with more kids and fewer teachers - as he prefers adults - no doubt this is not a good change to him )

Wednesday, March 19, 2008

Cranio Sac Therapy

5 grams massage c- sac therapy - We took R was his session today and I really liked it - it was expensive 50 dollars for a 25 minute session and we will be paying out of pocket but it was really nice and VERY gentle base of his skull and that she could feel some heat coming out of there and that he seemed to have some twists in his neurological system ( she suggested birth injuries or something )
Sounds mumbo jumbo but right after he jsut seemed MUCH more calmer and well regulated - that we went to the Mall - he sat quitley in his chair and sketched with an alert happy expression and ate his lunch and did not protest to not doing his favorite things - this is a big deal as R seems to protest everything that is not according to his wishes . Even DH who is the king of sceptics and as scientific as they come happily made the next appointment for 2 weeks later LOL
The oddest thing was that R did not seem to mind it one bit and sat quietly there

Monday, March 10, 2008

Mercury Rising

Well we thought we would get the French Urine Poryphirin test just to rule things out
Now R never had a bad reaction to vaccines and I thought that our road into ASD was part genetic and part a 3 month period of 6 ear infections and constant antibiotics Still I had heard about this new test where you send urine to France and they test It really was more in the spirit of just to make sure Well the results came back and I am just sick to the pit of my stomach His Mercury levels have come back abnormally high- I think the normal range is below 9 and his is 23How did this happen?

Tuesday, March 4, 2008

Therapist churn and inconsistency is really one of the hardest things in running a program - I so wish therapists would call back when they said they should and show up when they say they would
Sigh !!!!!!!!

Monday, March 3, 2008

Happiness lies in enjoying the small things
This is one of the things Autism has taught me
Enjoying the what is and what I have rather than fretting for all the things that I dont have
Its been a long day at work and I am traveling but tonight alone in my hotel room ( which is bliss) I got to slide open the Hotel Door and enjoy the lovely breeze and read the latest Hamish Mac Beth novel "Death of a Gentle Lady " and no one needed anything from me
Bliss !!!
Tomorrow is another busy day

there are storms predicted for the South and I will surely have trouble getting home as US Airways cancels flights at the drop of a hat
Tonight is bliss though

Friday, February 22, 2008

R's school is shut down with sickness of teachers
YIKES
And its a rainy dreary day !!
The weekend is off too obviously AND he has monday off - so yikes a 5 day weekend and sine RE currently loves school - I am afraid he will be soooooo bored

Friday, February 15, 2008

Course Correction

I think last night I answered my question a bit myself- the evening - and I did this for one hours only - was REALLY different - I literally just let him take charge of the agenda
So when he showed me the sign for Swing
We went outside and I swung him hard - I did not continue this for a long time - After a few pushes - I would stop and wait for him to show me the signs for "more" "swing" - which he did for a while but when he stopped - I did not Prompt him with a question "More Swing ". One of the FT prinicples is to assume intentionality and so I assumed that when he did not show me the sign he did not want to be swung
He led me to the ball pit and we took turns putting the balls in the basket ( baby basket ball lest I give the impression that I have a basketball prodigy here LOL )
Then he took me to the wagon - I put him in it and dragged him around for a bit on the street in front of your house ( I SHould totally have asked him which direction he wanted to go in ) We also played with Mr Stick ( I tried to pretend that the twig also wanted to go for a ride in the wagon )
Then he made me stop in front of our neighbour's house - she is ga ga about him and he ignores her when she kisses him and stuff but always wants to go to her house - ( I have asked her if its okay we stand on her porch when she is not home as R likes to stand at her door and try to turn the door handle ) and she said she is totally fine with that -
ANyway I could see she was not home and normally I discourage him from trying her door and he cries but today I let him - he walked to the door - showed me all the things he wanted to do on the door - oh you want me to turn the handle , which side should I turn it ... oh its not opining ?.... what should we do next ... shall we knock..... oh you want me to ring the bell -
Finally I showed him that her car was not parked in the driveway
ANd so we left ( WITHOUT any tears BTW )
And then R surprised me yet again - he took me to the side door - which she had once taken her through LAST FALL - I could not beleive he remembered ... and so we went on
It was an enchanting hour ( but exhausting ) but I truly followed his lead and build many circles of communication and I think for the first time after 8 months of thinking I was floortime - that I actuallly did it
I am so proud - I am slow but atleast I still managed a course correction

Thursday, February 14, 2008

Not really Floortiming - YIKES

How STUPID am I!!!!!
And while I would rougly consider myself to be a Floortime Mama I realized I am not truly doing Floortime


The principles that I have been following well are

Getting down on the floor and playing
Starting up with a little imaginative play
Opening and closing many circles of communication ( but not necessarily in a row and not necessarily starting with the child’s lead )

The things I have been doing badly are

Extending the circles of communication in a row and

Starting the circles from following the child's lead

I was listening to the Stanley Greenspan Podcast titled “how to follow the child’s lead and still move them up the developmental ladder” and a sentence really struck a chord with me – “if when you are doing Floortime with your child and you can predict the response that your child is going to make then you are not really doing Floortime…..if you can predict it then you are basically doing rote patterns of play not really Floortime… and the child is basically responding from a memory pattern not really creating a new interaction ”
Well I honestly can predict what R is going to do pretty much all the time – because there are these typical games we play – example
I will sing and we will do the actions to song or I will say 1….2 …..( build anticipation ) till R has the great look of expectation on his face and is already giggling and go Tickle tickle tickle tickle ( with tickling him )
Serena Wider his colleague also mentioned that Sensory activities while they are a lot of fun are not the end all of Floortime – Well that is exactly what I have been doing

I will describe yesterday evening after I got back from work – yesterday I actually was mindful of this and tried to use playing dumb as a Technique but it was a big struggle
4.15 – 4.45 – snuggle on the couch
4.45- 5.25 – play with pillows on the bed – make “baby sandwich” – laughing and tickling
5.30 – 6.30 – ABA therapist
6.30 – 7.00 – nothing – R is busy stimming post therapy
7.00 – 7.30 – feed him dinner while he sees Little Einstein’s –sing the songs in the episode and he and I will do some of the actions
7.30 – 8.45 – read book together with him on potty – 5 minutes – spend an hour in bathtub while he holds up various numbers and alphabet for me to say , sing to some Sesame street Songs
8.45 – 9.30 – rock him to sleep ( or not as in the case yesterday ) – 9.30 settle him with a Math DVD and some Animal crackers and tell DH that R is now his !!!

Wednesday, February 13, 2008

Two Sleepy evenings

R has again started sleeping badly - its this horrid cold he is fighting and as always when he does not sleep well at night - I have to fight all evening to keep him awake and its just such a battle !
Plus it ends up being a LOT of TV - so last night R actually did the following after he came home from Pre K
ABA - I hour in which he cried a bit becasue he wanted to fall asleep
Swing and wagon outside - 30 minutes
Bath and playing with bath toys and singing songs - 1 hour
Television - 2 maybe 3 hours - Baby Einstein Numbers DVD - still loves it, and Little Einsteins - Mr Penguin Ice Cream Adventure - big favorite every evening
YIKES - but I was really really trying to just keep him awake till bedtime ( 8.30 pm or 9.30ish ) cause ifyou let him sleep any earlier - he will be up at 2 or 3 IN THE MORNING
I really really hope he has slept last night and that we have a better evening

Monday, February 11, 2008

Reclaimed it !!!

Yes we did it
We finally reclaimed the weekend from Chores
DH chopped all veggies on Friday night - we did lanudry Friday morning - I actually came home at lunch and started it and I changed sheets and towels in the evening when DH and R went for Musical Gymnastics
I cooked in the morning when his ABA therapist was here and by 11.30 it was ALL DONE!!!
Wahooo - Saturday morning and no more chores for the whole weekend
I also did a pretty good job of playing with R one on one and opening and closing circles of communication
Today I also read this post on the Autism board and I realised that I need to do more
But I still want to do a little celbratory gig that at the very least we had a real fun weekend with lots of play and music

Friday, February 8, 2008

Reclaiming the weekend

Yesterday was a much better evening inspite of the fact that R has a bad cough and cold.
And also becasue he was tired and sleepy in the evening
This was becasue
  1. He was not tired as there was no therapy in the evening
  2. We did not go out anywhere or do anything like The Mall or anything like that
  3. We just sang songs and played
Funnnnnn
This evening will be baaaad because we may need to go to Kroger
or something like that
I am really trying to finsih all our errands and cooking and stuff as I am trying to reclaim the weekend
The weekend has become such a ordeal of chores!!!!

Thursday, February 7, 2008

Phooey on me
I suck
Yesterday I yelled at R because he would not take his cold medicine
Really yelled
And in anger !
I am so ashamed

He cried so much so much so much
He is such a sensitive child
And the net result was
  1. he did not take medicine
  2. he was sad and DH said every time he woke up in the night he was in tears
  3. all the crying made him snottier than ever
  4. I was so horribly guilty

Well atleast today evening he does not have a therapy session and I will try to make it a fun evening filled with Songs and Sensory and lovey

I took a bunh of easy to take cold medicine - those cold strips, the shower soothers and the Baby Rub

DH got him to take some Delsym so hopefully he will be caughing less

My cup of guilt runneth over

Wednesday, February 6, 2008

This week i have been sitting ion my fat butt and not doing a thing - R has been feeling out of sorts which is ofcourse all the more excuse for me to just sit on my butt and not do floortime or any of the other things I need to be doing ( including but not limited to exercise )
Today my aim is very very simple - do one hour of flooritme and do exercise
Also get started on Bloody Performance review at work

Tuesday, February 5, 2008

Well I did something really amazing yesterday - I cleared out the guest bedroom and turned it into a "Pretend Play" and :"FIne motor skills room"
With a pang - I also suddenlty realized that for some reason I like to plan for what I am going to do rather than actually do it
I keep trying to go to more seminars and read something more whereas in reality I need to be more in the present and DO all the things I want to do with R
I espeically realize it when I find myself - wanting R to leave me alone so I can do something so we can play together later
How strange and ironic that is

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

Floortime Lite Mama

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