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





here is our bedroom ... I was really looking for an English Bed and Breakfast look

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

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

 

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.

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

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

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 )

 

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!

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