St Augustine and Ponte Vedra- the wedding

Thursday

We go to the beach today
R has ZERO interest - we passed by the association's pool and that is what he wants to go in.
So we try for a little while ( I enjoy the water tremendously )
And then we go back and play in the pool and he is very pleased and approving

Then we shower and go down to the Castillo de ( something ). This is an old Spanish fortress . I am fascinated by their building and saddened by their cruelty to the Seminoles.

There is so much cruelty in human history

R is somewhat grumpy as he is hungry so we give him some options and he chooses the ubiquitous Mc Nuggets !

We eat lunch at a very reputed  restaurant that is all the rage in the reviews - Gypsy Cab Fare

But the food is sort of average

We go to the lighthouse museum - we take turns

I go up first

When I look down at R and DH below I suddenly have a strange thought

This is the way books always imagine being dead must be like

They are down below managing without me and I am up ( as heaven is supposed to be ) watching down

Strangely disassociated but still caring

I call DH and his voice is so real that the illusion vanishes and I am so glad to be alive and with these two that I love so very much

Here Dh is from above using the focus of my camera - sitting on a bench and reading a map

Later in the evening we go down to the Spanich Quarter and this is a lot of fun

We sleep so so in the night but it is a HUGE improvement over yesterday

The next morning is simply insane !!!

We are to meet with my classmate and are 30 minutes late - she is gracious about it but I feel HORRIBLE
Still love getting to see her and her ADORABLE daughter for a little bit and have lunch with her

And then we head off to Ponte Vedra for the wedding

For some reason my friend REALLY wants us all to have hair and make up done together at the SPA

Its a 129 dollars to do this but I sense its something important to her so we go ahead and do it

The lady doing my make up  keeps showering on the compliments and we are all in a rush so I dont want her to feel bad so when she does the Ta- da and shows me how I look - its a shock

OMG I LOOK AWFUL

I go to the pool to get DH and R and they are having a BLAST - DH bursts out laughing when he sees me and cannot stop

I dont blame him as I look like a clown

I run back to the hotel room -

but DH must take a picture of my hideaous appearance- cheeks that have a life of their own - small beady eyes and thin lips  - so here I am

I wash everything off my face and take a shower

My hair looks like a birds nest ( though the stylist assures me that I am SO HOLLYWOOD )

I would wash it if I could -but there is no time  so I have to be content with a birds nest on my head
At least once I take the clown-make u off my face looks fine

and the sari is gorgeous.

I go and help the bride and the bridesmaids get dressed - they are all wearing eastern garb as the bride is Indian.
 But she is as Western as they come and no one has any idea how to put on Indian Jewelery without breaking their hands or how to drape chunris

The wedding is marvelous - The groooms side - all are wonderful Minnesotans -seemingly stoic but so emotional and warm when you get to know them

R is at the babysitter - they have a babysitter for all the kids ( my friend -the bride -  has arranged this and she has foundone who is used to auties . what good friends I have)

When my other friend goes to see her son -who is at the same sitters - R runs to her and puts his arms around her waist and looks at her "pleadingly"

When she returns she tells me that R is the most emotionally expressive child she has ever seen and also insists that he be brought from the sitters as he "looks like he is sad and would prefer to be the wedding party "

Since the wedding party is over and we are all sitting outside on the beach - Dh goes and gets him

R quickly charms everyone by kissing all the ladies's hands and  then goes and lies down on the beach and makes sand angels.

I think we did our bit for Autism Awareness that day

We retun the next day and R is good as gold on the flight back.

I am glad of the lovely time becuse I have to leave for work again the next day and do the cycle of unpack - do laudry - and pack clean clothes. I also have to  cook all the gluten free meals for R for the week

The work week is also calling for 14 hour days ( which is my fault - as when I travel - i try to pack as much as I can into the days so I have to be out the least amount)

Also R's school bus is again causing problems for us -

His school is only 2 miles away but turns out he will have to be on the bus for an hour

This is giving me acidity as I am finishing up this post outside in a Starbucks and feeling anxious getting ready for my next meeting

IEP and trip to St Augustine

Tuesday

Another dazzling Fall day
DH off to play golf and he has switched off the computers and TV before I come home!
So we run out into the back yard and play for an hour -

Its really not smooth sailing at all. R looks tired and is hard to engage but I plod on. There is no denying it - he is definitely  in a phase of low with-itness

he kicks the sand desultrily - an indignant looking earthwork rises up like a snake and this provides us with some amusement

Screen weaning is hard

Paradoxically - he is doing very well in therapy and in school

He has gone on a pumkin trip today and his teacher emailed me this picture and has promised to send me the pumkin tomorrow ( I am not at all sure I want it - still its so sweet of her )

Even the pretend play is coming along - he takes the doll R on a car ride and adds two explorers to it - but refuses to add the baby dinosaur - when I say in the voice of the baby dino and beg for a ride .

He sensibly tries to put the baby dinosaur on the back of the mommy dino ( I spend a lot of time with him in a carrier on my back  and I guess he thinks that is what all babies do LOL )

I guiltily remember I have missed his night prayers for a while -

its a simple prayer - "Thank you god" and then I add "for my wonderful life "

But when I tell him to say "thank you god " he says instead "welcome "

So funny  - it sounds so cute !

Wednesday

IEP in the morning- I really love his teacher. we really are not the "ask for more services" parents  any more. 

I pestered for and got some useless services last time. I have learned my lesson on this

His OT is unable to attend whom I really need to talk to

It more about his day and the attitude that we tend to focus on now. His new school speechie is smart and good and eagerly takes all our suggestions

Most of al they seem to know  R's personality well ! We have to pester a lot for a little word processor augmentative device - Many of R's words are unintelligible and this will really help

IEP goes well -When we go to his classroom - his assistants seem to be talking to the kids rather too firmly which I do NOT like ( not angry or harsh - just firm ) . The kids in his class are all just ADORABLE little small fries - they all have either Autism and I see one little darling who has Down's -I LOVE That girl - as she is socially so advanced and makes many overtures to R

What a relief it is to see her in his class!

The evening is madly packing for our trip to Florida tomorrow - as I need to takemost of R's food with me its a load of work

Thursday

The flights are all delayed but luckily we find out at home and so we have an extra hour in the morning

R has been so disengaged lately - its quite marvelous to see him so in tune so with it

For a small child - he behaves marvelously - very interested in everything - looking out of the window and pointing out trees houses and planes ( at my request )

Though we have brought along our laptops as a plan B - I  have also brought along a bunch of number songs in print outs - from here

R loves to follow along by pointing at the words while I sing the songs like "five little pumpkins""ten green bottles"" the ants go marching".

If you notice the songs are coincidentally all about numbers - its no coincidence!

I use numbers a lot for engagemnet - ironically the songs have been created for typical kids who are using engagement in music and social activity like singing to learn about numbers

We have a BLAST in the Atlanta airport - riding the train from the concourses... DH finds a way to get the the first carriage and its ecstasy - we point out all the NASA pictures and the many logical things there are in the airport.

Even lunch is great as we eat in the food court and are all able to eat our faves - Qudoba and McDonalds and Panda Express

On the flight from  Atlanta to JAX we are delayed and have the worst seats - right next to the toilet ! However even this turns out awesoome as its the seat with two windows and as we are late - the view outside is a special treat - 7 planes are queued up before us to take flight and many behind us .

R watches with joy and anticipation

How often I fly without grasping the sheer miracle of flying

This flight has been flown all day though as i can feel the lack of oxygen inside and we are exhausted

We reach JAX and are immediately revived by the warm and sunny air

We are staying here. An adorable condo and the lady is a warm hostess - She has left wine and chocolate for us - how can you argue with that !!!

We have a really nice evening

Follwed by a VERY bad night as R will not sleep. Which means that neither can we

Our sleep troubles are back and its horrible as we are all terribly tired the next day. The day is the only day we have really in St augustine and we are planning to pack in the beach and downtown in this one day which on little sleep does not bode well !

Still its easy to be happy as I am typing this sipping  Tim Horton's coffee on the patio and listening to the ocean make its racket - that may easily be my favorite sound in the world

Weekly round up W/o October 17 ( DAN, Recipes )

Saturday

We have to drive to Nashville and back today to meet R's DAN doctor .

We are going to be spending 6 hours in the car today I do not want them to be devoted to the watching of DVD's

So I take with me the colors songs and books- His teacher send them and he is thrilled about the song being played on the CD and following along with the books and will say  Singuh busik curs ( let us sing and play the music about the colors )

Unfortunately this plan has one flaw which is that the colors songs are annoying to us but R wants to hear them over and over again

the DAN doctor who I really really like has interpreted our test results rather differently than we have.
He says the yeast is fine - arabinose which shows as elevated ( the only one ) can show elevated upon eating carbohydrates .

Lead and tin which show as slightly elevated he believes should be removed by this thing called DMSA

I am not sure what I feel about this though apparently DMSA is VERY safe and can be used without a prescription

To avoid deciding, we think we tell the Doctor we will push this remedy to January once we return from our long trip to India

I dont know why we are a little against chelation ! I have talked to many mums who had done it and they think nothing of it


We shop like crazy at the Outlet Mall on our way back - R has outgrown everything this past summer
Luckily he is turning out to be long and lean like DH

I love buying clothes for the little guy

We are home by 8 but the day is far from over as its Diwali and we must light lamps all around the house - bathe - dress up in new clothes and pray

This we do

I get a new silk saree out for myself - its brand new- I bought it from Kolkata with my mum and dad 3 years ago -  and I have forgotten how much starch there is in the Indian Tussar Silks
Its is a  PAIN and I look stiff and somewhat awful - still I am glad I have dressed up( rachel here is R's new haircut )

My FIL whom I never knew was a big believer in this festival and because he is no more - I feel we must make a fuss in order to make up for him not being here
Plus it was always a big deal when growing up and my mum and dad always celebrated this


Sunday

Is a day of great impatience ,  though I am very productive.

DH was supposed to get up early and chop all the veggies and food - but he is so tired from yesterday that he actually sleeps till noon

So I slowly cook by myself - ( Tanya and Niksmom - here are some of the recipes I make.)

Chicken Tortilla soup( in the comments a lady from Mexico says everybody should make their own enchilada sauce - ancho chillies + onion + garlic + tomato - cook in water and puree - so that is what I do now )
Red Beans and Rice
Chicken Chettinad  ( new recipe- lots of trouble ) 

Cream of Broccoli
Pumkin Veggie - this is eaten with rotis and is very tasty and easy to make

Its all rush rush rush today

I also tell R that he is all done with the Remote and will only now get it to choose his program but not to go to particular scenes

R is crushed and does his whole cycle  ( disbelief - then angry dervish- followed by sad tears - hopefully acceptance shall follow tomorrow)

And we go to R's musical gymnastics - we go into the nearby  Kroger as R does his OT.

DH is not too happy as the last time he was there the check out lady charged him for meat which she then did not put in this grocery bag.

After this we go to R's babysitter's housewarming party .

I am very annoyed with R as he makes a beeline for their computer and will not let it be .
I finally have to do stern voice PLUS deadly look - but I am genuinely annoyed as this falls within the turf of bad manners!

Outside, I am a little taken aback to see how well some of the little boys are kicking the ball - R runs around hither tither enjoying the wind and ignoring everyone.

Suddenly I wish he would try and kick the ball too ...play with these kids 

But the truth is that he has no interest in it ( and moreover he cannot ) and to entertain thoughts like these are the precursor to maudlin moods and self pity which I am fighting these days

Still being around other little kids is such a wake up call for me as to all the things we need to be working on.
I scrub and clean the kitchen thoroughly. This always soothes me.

When I am troubled- as I have been these past few days -   I can atleast keep one little bit of my life - the kitchen counters - clean and tidy .

Is it any wonder why auties cling to rituals ?

If one takes a minute to think and observe - there is nothing very mysterious about the behavior of autistic children to me. Its very human- not "other-planet" at all !

At home we jump and swing and play with dolls and then with musical instruments and then its time for our nightly routine


Monday

The first perfect gorgeous Fall Day - Ironically I have to work and work late in a meeting room all day

WHen I get home R really wants to watch TV

 I refuse ( gosh how I hate being the no- sayer )  and as a substitute let him do the colors CD and the book. At least while doing this he is sitting in my lap and we are pointing at all the words together - rather than him tuning out

Also I want to see how this obsession goes.

Autie mums and dads are obsessed with their kids not having obsession - but my theory is that most obsessions will simply run their course (like they do in typical kids)  and it becomes a big deal only because we are so keen to not let it happen ( which unless there is a genuine OCD component ) I beleive it will

I put him to bed today as he asks for it and I dont want to say no

Then the day is done and I curl up with Murder mystery theater and frozen yogurt and fold laundry

How to handle stimming ?

As our experience in autism land is growing I have stopped thinking of R's challenges in terms of Autism.

I think of these challenges in their component parts.

R has several challenges . But the two that are the most critical are

1. Apraxia ( the mouth muscles not moving right )
2. Sensory Modulation  ( not being able to stay in a sensory stable zone,  showing this by Stimming )

Sensory modulation is the one I am thinking about today

Last week, R has been somewhat stimmy and I have been baffled by his preference of electronics to people for play .

I have been worrying about it - but that is no help at all

As always its critical to press the reset button and start at the beginning

So yesterday on my way to work I have re-listened to Dr Greenspan web radio show on "How to handle Stimming "( free download from itunes ) . Its a stellar lecture!

Here is what I learned

Why does a child stim ?

 Self stimulatory behavior which is R's case is withdrawing into himself through some kind of repetitive activity( repeatedly watching the same scene over and over again on TV )  - have two reasons:

1. is that there is too much stress in life due to which the child withdrawing OR ( in the way we may mindlessly watch TV in order to tune out a stressful day )
2. there is not much going on and so the child is bored ( in the way we may click our pen or shake our leg at a boring meeting )

Is stimming good or bad

Stimming can be good or bad. We all stim by twirling our hair, clicking our ballpoint pens etc.
1. The child uses the stimmy activity to organise themselves . The activity is calming  and good-(  example if we take a walk around the park and feel calmer afterwards  )

2. The child's stimmy activity disorders and disorganises  them further and turns adddictive ( bad ! -  in the way sometimes when we are watching TV we know we are tired and bored but are unable to switch the TV off, in the way the internet can sometimes get addictive )

Third, what should a parent do to help a stimmy child?

1. Reduce the stress ( to a  parent who calls in with a question  on stimming , he suggests,  having the child take a mental health day, cutting down the school day to a half - day )

2.  Satisfy the need for stimming by REPLACING  the stim . ( He quotes his college professor "dont take something away - replace it with something better ") For example, if your child is craving visual sensation - play flashlight games

3.  Most Importantly. go back to the basics of floortime - joyful engagement, shared attention, back and forth interaction

In our case the answers are:
He is stimming because he is stressed and slightly bored
His stimming is addictive
And
We need to  woo him back into a shared world  and provide some loving structure !

So I shut off the computer after returning from work and also I use very high affect -
When I see him in the evening. I tell him how thrilled I am to see him and whirl him around and around ( dont try this if you have a sensory avoider - R is a sensory seeker )
After some energetic rolling around on a matress
We run to the trampoline ( he suggests it ) . And even through its gross outside ( our part of the world is all dreary grey and   rain this year )
And have a really great Floortime session - we play games he loved as  a baby - 1...2.....3... Tickle

I have not seen him laugh so much in a week and it feels really great !

In the evening we go to Target - we need to buy a  kitchen gadget becasue its Dhanteras ( which precedes Diwali the festival of lights - kind of like a  Hindu Christmas ) and even there he seems more engaged -
DH has done all the grocery shopping in the day and has been very firm about him not wandering off

Its funny that he seems more tuned in with the strict structure-And suddenly I realize that structure begets security !

I am writing down the rules so I remember in the next stimmy period

Rule 1 Find out why R is stimmy  and eliminate the stress or satisfy the sensory need

Rule 2 Dont be afraid to provide the strict structure and turn off the screens

Rule 3 Go back to Floortime Basics

Amen !

PS Just wanted to add a great article that Niksmom showed me last time about setting limits  Thanks Niksmom

Over the top blog

Thank you J for linking me up in the Over the Top blog Award game.

Where is your cell phone?- in my purse




Your hair? -shapeless



Your mother?- fun



Your father? – loving



Your favorite food?-thai



Your dream last night?- insomania



Your favorite drink? coffee



Your dream/goal? – happiness



What room are you in?- office



Your hobby?- blogging



Your Fear?- loss



Where do you want to be in 6 years? – happier



Where were you last night? – Target



Something that you aren’t? Cruel



Muffins? tops



Wish list item? appreciation



Where did you grow up? India



Last thing you did? expense report



What are you wearing? suit



Your TV? at home



Your pets? none



Friends? many



Your life? full



Your mood? content



Missing someone? yes



Vehicle? Subaru



Something you’re not wearing? necklace



Your favorite store? Book



Your favorite color? Maroon



When was the last time you laughed? an hour ago



Last time you cried? 15 minutes ago



One place that I go to over and over? Atlanta



One person who emails me regularly? Dad



Favorite place to eat? My home

If you are reading this consider yourself nominated and play along if you will enjoy it - would love to read your answers

Weekly Round up W.o Oct 10( battles over screen time )

Saturday

Cook like crazy in the morning .

In the evening we are off to dinner at a friends' place - they have a small kid - a 1 year old - who watches every move of R with rapture and interest -

R of course totally ignores her after kissing her hand charmingly .

He spies their computer and N tells me he can use it . So he is on Nick Jr for the rest of the almost 2 hours that we are there. I am really bothered by how he tunes out everybody as soon as he has a computer .

C is busy in the kitchen - he is a marvelous cook!

N is busy feeding the kid

Its amazing to me to see a kid who opens her mouth eagerly for each bite .

R did not eat hardly any solids till he was 14 months old - it was such a stressor for me. Exclusively nursed!  though he consistently stayed at the higher end of the weight curves - like 95%)

N really wants to have another baby and talks at length about all the pros of having another baby.
When I go in the kitchen to help C - he tells me all the cons of having a baby.

LOL - clearly this topic looms large on their minds!

 I am careful not to offer any advice - as these are things that really should be decided by oneself - and they are a very sensible couple( though secretly I am in favor of C - he is the Stay at home Dad and I think he should get to decide- as its kind of a little bit more his area )


Because R is so busy with school and all the therapy -  I really have been letting him have too much of his free time on the computer and I need to stop

On the car ride home, DH and I talk about how we need to get R into his own bedroom

When we get home, I simply switch off everything and tell him we must play .

We play with the dollhouse 

I say Mama loves R and put the mama' dolls'  arms around R- doll .

R brings out Papa. He puts Papa and Mama's arms around each other with tears in his eyes and throws R- doll away.

Guilt floods over me as I realize that R overheard our conversation about ending co-sleeping and that he is seeing  me turn the TV and computer off as some sort of punishment along with the end of co-sleeping

I make a big fuss of him but he has a very woebegone expression.

Sunday

I am determined today to make sure R gets less screen time!

So I turn the computer off- after an hour in the morning.

OMG how depressed he is while playing with some toys with me - listless and low energy !

We play a lot though its uphill all the time.

He sparks up when I suggest the Wii Fit after an hour or so

Then we go outside and jump on the trampoline and sing songs, swing and ride the bicycle - this he is happy to do

Then DH cuts R's hair while I make sure he still has eyes at the end of the hair cut .

He is really happy aftter his hair is cut - I think now no stray hairs are getting in his eyes and this is a big relief  

In the evening I have a friend over for dinner ( she has two ASD boys on the two ends of the spectrum )

So I let R have computer and TV for the 1.5 hours that she is here.

 R is a joyful stimmy mess at having the beloved computer all to himself .

He is also so tired that he falls asleep at the right time with no fuss!!

Monday

DH and I had planned to go out for lunch but its grey and gloomy .

SO I come home and we eat soup and kebabs and watch a little bit of Murder Mysterty theater -

Gosh how I love this show!

Rain+ Soup+ my hubby + Mystery - what could be better !

Again I turn off the computer in the evening and R is a little sulky  .

I am noticing he is very stimmy with the TV as well - he does not rewind to songs but to special flashing images. He is squinting his eyes a lot ( opening and closing ) which makes me feel he is trying to recreate the flashing lights feeling in thing he is seeing in regular llife.

This means he is craving visual input and I am wondering what kind of sensory diet can help satisfy this need - rather than the flashing TV. Flashing television images make me nervous!

This kind of stimming leads to a very hyper R and I can see we will need to limit - if not eliminate  him having the remote as well

More being bad- mum

I feel a little depressed as I realize how addictive the screens are for R and how easy it is for him to REALLY get into it in an obsessive fashion

Besides I love being fun-mum and bad-mum sucks .

One bad thought leads to another and I recall the article I read today about how the Hep B vaccine screws up Rhesus monkeys and is implicated in Autism.

Its hard to sift the truth in Autism articles

But the saddest thing is the Hep B vaccine which is given immediately after birth is completely unnecessary if the mother does not have Hep B ( which I do not have - but its the OB GYN and the hospital not taking the time to check records and just giving the vaccine anyway )

We were also coerced into getting it I feel. ( the doc from the pediatrics place basically told us - if we did not get the vaccine we would not be accepted into his practice. And also that he hospital wont release us if we dont  have a pediatric  practice we are assigned to .

I can see the scene like a movie in my head. And this article I read earlier today - just makes me want to cry ( which I do and then I scold myself out of the gloom )

Using those thoughts
which should indeed have died
With them they think on?
 Things without all remedy

Should be without regard:
 what's done, is done.

- Shakespere


R withholds affection as a punishment for me ( which- like all his manipulative behavior - I feel so proud of )

He kisses me goodnight by rubbing his cheek against mine. ( instead of his usual - holding my face in his hands and kissing my forehead and then cheeks- is it any wonder that I am so bessotted by this child ? )

Random acts of Kindness

I have been thinking lately of how easy it is to choose to be kind

For instance , my friend Debbie always smiles at Wal Mart greeters because as she says "you never know if that is the only social interaction they will have all day"

Now I too beam at them .
There is an old man who lives a few houses down.

He and I always seem to be taking walks at the same time. And he always smiles at me.

DH calls him my boyfriend  and he comes up often in our conversation

For example, if DH does not thank me when I do something for DH, I tell him reproachfully "I bet my boyfriend would never do that."

The old man is very hard of hearing and so chatting with him is a little tiring as I have to yell at the top of my voice

But these days, I think  of what Debbie said about the Walmart greeters( what if this is his only social interaction of the day ?)  and I have resolved to chat with him no matter how awkward it is to yell out pleasantries!

And every day this week - its as though my smile says to him that I am open to chat instead of just being polite.

So, instead of just saying hi he crosses the road and  we talk

And everyday he asks me a question

What is your name ?

Then

Where do you live?

Then

Why do you walk ?

He asks me the other day

( I tell him its to lose weight.I try to look interested,   - when he explains in detail that weight loss calorie intake minus calorie output )
But the next day he offers to give me his exercycle.

When I say I already have one ( I dont, but loathe exercycling ) he gruffly says "its just lying around "-( not wanting to appear too kind too needy)

I sense a proud spirit and thank him sincerely for the thoughtfulness and he looks mollified

A couple of days ago he asks me " What is your son's affliction .. why do you have to wheel him around ?"
( I have told him earlier that R has Autism but I am guessing he did not hear the word Autism or does not know what Autism means  but has gathered that R has a condition )

 " I just wheel him so I can take a walk at adult speed .. I miss him all day so I hate being away from him in the evening ...he has Autism but he can walk ?" I tell him

"What is his prognosis" he asks

I reply " His prognosis is fantastic.. he is just so smart and so sweet "

He recognises the dont-you-dare-feel-sorry-for-me in my voice ( takes one to know one )

Pats my shoulder and says "He gets that from him mother"

The book is wrong - its not really pay it forward

Random acts of kindness have instant return

Weekly round up W/O Oct 1

Thursday

Is a rushed day at work and I take off at half day.

We drive to Indianapolis-  go non-stop.
I want to stop at Mc Donalds.
However DH insist  that we should have a proper meal . So we get McNuggets at a drive thru for R for dinner . He LOVES them.
We have a really  nice dinner as the hotel has a nice restaurant in  the lobby.

We bring a laptop with a computer game with Big Bird on it and we have a lovely time.
Really we go everywhere with R - we just make sure to make it enjoyable for him

It turns out that they have a nice warm water pool and so we make a quick trip to Target so DH and R can get swimming trunks for the next day! while I am at the conference.

We are very tired so it takes me ages to get us ready to sleep

Friday

Is the conference which I wrote about in my previous post!
DH and R swim in the morning and then go to Children museum

We drive back home - it takes us AGES to get back. We eat lunch at Cracker Barrel ( of course stopping by McDonald's to get the ubiquitous  Mc Nugggets for R.

While I know this is junk food - its such a relief to have something that R will eat outside and eat happily. He  sometimes turns the container upside down to make sure that its all gone.. This really really makes my heart sing as he is a very fussy eater and its a constant source of stress for me when we travel )

Because of this junk he says "Chukun" ( chicken ) so well
I have not been watching what I eat as carefully as I need to and I will have to do the walk of shame at the LA weightless center next week

It takes us REALLY long to get back home and R is sooo thrilled when we are back home
( and so am I ).

I love my home

Saturday

Is a glorious sunny perfect Fall day!

DH chops and I cook in the morning ( but lazily ) .

Its amazing to me how many beans we use
Since trying to read about nutrition - beans are really the perfect food - So I puree chili beans into a tomatillo soup , make a bean salad with chopped peppers red onions and black beans and chick peas and also make a kidney bean soup ( Rajma ).

I make chicken curries and potato dishes for DH - for I am bean-mad and he is meat-mad

We go to the Expo center which turns out to have an entrance fee.
We see people turning away with  outraged expressions "Walmart does not charge you money to shop" an old lady is saying - puffing away at her smoke  self righteously.

She is right but we go in anyway!

Inside is an ALARMING display of poor taste - wall hangings displaying  impossibly bosomy women, paintings that are lit from inside, pictures of benign deers  and religious devotion in every art form you could imagine- like lamp shades etc.
There is especially an abundance of gaudy jewelery - the kind you see in gangster movies

All this is very funny and we enjoy ourselves tremendously .

I buy a  camera for my mum .

R runs hither tither like a crazy bug - its too stimulating a place   - we literally have to take turns- one looks at things the other looks at R.
I don't know how single mums and single dads do it!

Back home I lose my temper at R as he does not want to go on the stroller for a walk with me.

He wants to do the wii Fit .

I say to him First Stroller then Wii Fit .

But he he keeps saying Wii FIt
I  yell - No Wii FIT if no stroller

He is my son and has a lot of Self respect - so he climbs on his high horse and goes away to the computer
I go away and spend some time on my  computer
Later on I go back and apologize to him.I tell him that I try to be a good mum but sometimes it does not work out.Mollified, he backs into me and then hugs me tight.


Sunday

Promised to be a glorious sunny day but dawns greyglumgloomy

I loll around a bit with R and then also stim on the computer - Facebooking and blogging

Then in the afternoon we go to Miss Heidi's - she is just adorable - 5 kids and skinny as a rail and looks about 16
They are trying out some new moves .. where he has to move to the music - its really VERY hard for him and its more evidence of the global apraxia that plagues him

But I am soooo proud of the way he goes on a really high balance beam - bending down to press the horns and then rising up again .
Since he has gravitational insecurity and a mild bit of vertigo - its really an act of courage.


We come back home and it starts to rain in the afternoon - DH and I plan to loll around in front of the TV
But R has different plans.He comes down and tries to shape my hands.I cannot quite make out what he is trying to say
So I open word on my laptop and type in "BUTTERFLY?"
He writes FISH
As I start moving my hands like a fish

He then quickly he types JUMP
While its raining, we go out to jump and jump on the trampoline like mad crickets and then he wants to swing.

The rain is very wet and now its somewhat chilly so I bribe him with the Wii Fit after swinging 200 times
Once inside I change his wet shirt with a shirt of DH that has somehow missed completing the cycle of the laundry .( ie it was washed and folded but somehow missed being put in the closet - every time I see it I remember that I must put it away but I keep forgetting )  He is sooo adorable in this giant shirt

And we do Wii Fit  - I make him say everything - he is getting so good - he almost says "Soccer Heading" clear as bell !( it does not have any of the sounds he cannot make - even the "Ruh" is silent !)

Monday

In the evening I quickly make R's dinner-
I make the batter for R's Gluten Free cookies and then ask DH to come and drop them with a spoon on the oven tray.
DH is very dextrous and his I know will come out better than mine . He instead finds and alphabet cookie cutter and patiently spends ages  makes ABCD shapes for the cookies - really he is such a good daddy !

Hopefully R will notice1
Its interesting that parents usually are trying to teach their kids the alphabet by shaping treats into them
We try to get R to eat stuff by turning treats into academic thing.


Such is the topsy turvy world of Autism parenting

As the evening is whizzing past I tell him he must choose between WiiFit and Computer - this is a hard one for him and he spends ages deliberating.Finally he chooses Wii FIt - he finishes it one game early -hoping to get some computer in . But I am firm - he does a little fake cry-to negotiate - But I am too smart for it ( bitter experience has taught me to be careful - if you give in once this will quickly mean that you will give in always and the power of the visual written schedule will be gone )
I tell him C's mum said he looked cute - he looks startled at this  -I can see the wheels turning in his head( where did she see me .. what was I wearing ?) . I tell him in the bus and he looks reassured

Tuesday

VERY busy time at work and the evening passed by maddeningly quickly
Its a dreary rainy evening and DH's golf is also canceled which sucks. We cannot play outside and I am getting really frustrated with the way my time with  my baby passes by so fast. It seems like whatever free time I have with him - I am fighting with the screens or doing logistics .
Further I want him to be able to have some time to do just what he wants as  he works sooo hard. Which is why playing outside is perfect - he loves it - I get time with him - AND its good for him
But the rain is killing my fun ...
Go away  - horrible sucky rain .. you are ruining my life
Waaaah waaah waaaaaah

Kaufman Seminar: October 2009

Here are my key to do's from the Kaufman seminar as applicable to R

HIGHEST APPROXIMATION :

Make a list of favorite objects and write down the highest approximation that R can make of them

Example – Ming Ming ( Wonderpets character ) would be mi mi. Remote – would be – Mote. The idea is that practice makes perfect and so you keep practicing and replacing the lower approximation with a higher approximation

While its important to show approval for the best approximation – its also critical to model correctly – Example "R you want to open window? Say opuh widow – ( after R says opuh widddo then say "good saying open window")

START WITH MANDS

This basically means teach them language by first teaching them to demand things. So teach them the word Sprite because they love Sprite( if they do ) not to randomly label juice – If they have no interest in juice. This is because many Auties can label accurately without being able to use the word functionally ( this is not a problem for R largely because we have always followed this principle )

She seemed a big fan of errorless teaching and also said at all costs to avoid power struggles with the child

So for example if the child wants candy - just start by saying candy candy candy three times and immediately giving the child candy. The next time see if he will make even a little sound and reward and praise and give the candy immediately

SCRIPTING

Teach them to use phrases not just the word by teaching them the scripts - even if EACH word is an ( highest ) approximation. Example "I want to jump" instead of just "Jump"

PIVOT SYLLABLES

If they can master any pivot syllable( something that could be a pivot for many other words ) like "ny"- teach them all the words with that – like honey , bunny, funny.

Similarly use Pivot phrases while using scripting. I pivot phrase would be something like "I want " "I see"

BRIDGE

Say if they are having trouble with a word like Down teach them a bridge word like Daddy –

AVOID POTENTIAL PROSODY

Prosody means speaking in a monotone( inflection – less ) . So make sure when you model a script sentence or a word you speak it with a natural intonation not in a monotone!

RAPIDLY EXTINGUISH THE END DUH SOUND

R sayd "Byduh" in place of Bye – I asked her about this and she said its easy to start speaking but hard to stop which is the reason for the Duh at the end

But she said it has to stop as it's a habit that can continue

 

OTHER INTERESTING THINGS

I got to have lunch with her ( she did not single me out of the large audience for my extraordinary charms – but she had lunch with handful of parents that were there – as the audience comprised largely of SLP's )

So I asked her the question that we have been wondering about as to why he can say the e sound ( the way we say the letter e not how its said phonetically ) when stimming but cannot do it on demand

Kind of like an example of a child she gave who could stick his tongue out when a lollipop was held out in front of him but could not stick it out on demand

She said this is the classical sign of Apraxia but she did not say why this happens. Just shrugged her shoulders – LOL

She also talked about how Vincent Carbonne ( who is the expert on Verbal Behavior ) and one of her collegues have come together – Vincent Carbonne believed that the main challenge that auties have to language is lack of motivation. But the fact is that many auties have apraxia along with autism . So even when the motivation has come – the plain ability to speak may not be there

I will write more reflections – but the seminar was good and I am glad we went !

 

 

 

More weekly round up Thursday onwards

Thursday

We meet some friends for dinner. We have been trying to schedule time together and it turn out if we depend on weekend schedules we shall meet next year. So on an impulse we decide to meet THAT day . Its a really nice famly place - shiny clean - fries to die for. The owner comes and meets us.

R behaves very well - he is very hungry and wolfs down his food . once food has been eaten - he does a few stimmy dances. I tell my friend firmly that he is doing VERY WELL( inspite of his stimmy behavior ) I suppose I am secretly scared that she will feel sorry for me as she is meeting R after 2 years. She says of course he is !

her son is a simply divine child - about 13 - and he is so sweet to his mum when he was 6 or 7 - making his mum little jewelery in crafts class. I tell him that he made me realize that having a kid may not be such a bad thing after all ( I was never much of a kid person - till I had R ). He is red with pleasure

As we have eaten dinner outside R has missed his TV - so in order to see his TV ( and knowing I will never refuse food ) - he runs to the frig and writes EAT DINNR( its funny to see him spell wrong as he is marvelously accurate with the words that he is interested in )

Any I DO let him watch TV but also DO feed him some pureed veggies ( so as to not let him do this trick again)

Friday

Is another evening that buzzes away without noticing

We watch an alarming amount of TV after R goes to bed

I cut only the front part of R's hair as he cries piteously when his hair is being cut . But the front part MUST be cut as its getting into his eyes.
So I cut some bits from the front promising just 5 snips. he eyes me suspiciously as I do the countdown!

This I am SURE is the way the Mullet originated .

Someone's wimpy mother - too wimpy to cut all his hair, but also fearling blindness from all the hair in the eyes just  cut the front part

Saturday

DH chops and I cook furiously in the morning
We are all done by 1 . its still raining thunderously
By the afternoon I shake my fist at the grey skies and am DETERMINED to have fun - I end up remembering that a fellow college had  told me about this cheerleading place which lets you do free play - we go and its a MARVEL - 5 dollars for an hour and its a sensory delight - R has a marvelous time ( and so do I )

We go to Home Depot to get our new front door - its brigt red and has a screen - which is lovely as all the Fall I love to have the house as open as possible trying to get in all the fresh air I can in preparation for the lousy winter
One alarming thing I am noticing in R's propensity to just wander off in the store ( in a flash of a second )
In the night before I go to sleep - I am seized with a HUGE moment of PANIC - I have been so lazy with Floortime these days

Sunday

Is GLORIOUS - its like all these days of rain never were - the sky is blue and everthing is shiny and fresh and clean

We go to the park with my gorgeous friend and her two gorgeous daughters - we have a simply marvelous time- Her daughter goes to school in the same class as R and R perked up when I wrote her name on the schedule this morning But at the park all three ignore each other.

Autie kids are so peaceful to be with and L and I have a lovely time while our kiddos just play by themselves peacefully - coming to us from time to time for hugs or to explore our purses for treats or lotions
Its so nice to be with someone who is completely in my parallel universe as we understand each other perfectly!
L boasts" C lied to me yesterday" and I clap my hands in delight ( only an Autie mom would know what a marvelous developmental leap the desire the decieve for your own gain is )
At home I basically either take R out or feed him - so we jump in the trampoline or go for a long walk

One funny thing I notice is how easily R is able to sequence logic - so when I take June of Little Einsteins and place her on J in the alphabet sheet - he quickly puts Leo Annie and Quincy on L, A and Q !

Once R is in bed, DH and I watch Murder Mystery theater on PBS - which is marvelous and  spectacular.
We also watch Desperate Housewives - but the prior show has ruined me with its high quality and the characters in Desperate Housewives seem petty, shallow and unidimensional. ( I know I will enjoy it again next week as I love its gossipy feel   -but today I am too high minded and sophisticated and about subtlety and art )
I have a hard time sleeping and make a vow to go to bed early tomorrow ( which as you see I shall break tomorrow )

Monday

I come back and loll around with R- I start a game with R of Wonderpets - but his teacher calls to tell me she wanted to say "Some progress " instead of "no progress" in his report card. on word approximations.

I take the chance to thank her sincerely  as R goes to school everyday with a smile on his face and this means the world to me !
She tells me that R is a joy and she simply loves him and makes my day
R wants to watch TV so I suggest that we do the Wii Fit ( he makes me do the exercises but he has to vocalize all the words and therefore has some value compared to the TV which is alarmingly passive )
Then we jump on the trampoline and go for a long walk
On the walk - in the stroller - he  throws his shoe down and I do not notice it - He picks out his other shoe and sneakily put its behind him to make me realise that the other shoe is missing while not actually confessing!

I squeal in alarm and tell him that his father will skin him alive as the shoes are a 40 dollar pair of crocs -(  we bought them at the beach last year - we wanted to let R choose and of course he picked the most expi one.) ( DH is the gentlest thing by the way and would never hit R - I just speak in hyperbole and make bloodcurdling threats out of habit ) - we turn around and R quickly points to the shoe and then puts it back on firmly.
The rest of the evening passes too quickly!

Weekly Round up W/O Sep 19th

Saturday


Is a marvelous day - DH chops food and I cook busily in the morning. This is the time when we also get a lot of chatting done with the background sounds of the knives, the questions of how-do-you-want-this-cut and my answers of slices-so-thin-that-they-are-invisible,  the sizzle of olive oil  and all the smells of the herbs and spices.
If the alternative cost of time was not so high I would really enjoy cooking - but I always have so much else to do!
Its my birthday and I get flowers and the sweetest( OMG so sweet )  cards from DH and R( eventually R's card is too sweet and he  does not want to give his card to me as the card sings)  and also from my friends and flowers and so many wishes
I love all the fuss very much!

In the afternoon we go to the Spanish festival - R meets a therapist who had worked with him till 6 months ago and she starts to cry when he says  Hi! and then when we are leaving waves Bye  and also says it !
He is talking now she says breathlessly. While he is only saying a few words that are perfectly understandable -  its true.

In the evening   we celebrate my birthdayparty with hats and a sign and a cake( which is actually a cupcake that R has chosen - a truly terrible thing - full of artificial color and fuss  -still its dear to me and I am glad that DH went with R's choice !

Ris thrilled with the hats ( though he wont wear one himself)  and the sign that DH has hung on the window that says Happy Birthday with ELMO all over it .( These are all remnants from his 2nd birthday party - we now only celebrate his birthday with all the things HE wants to do rather than what a typical birthday party.  As a result he and we - have a lot more fun!. This principle  has proved to be the theme of our life- to do what works for us  )

 I dont think R quite gets birthdays but we will practice on DH's next month and then on his own in November

Sunday

The euphoria of all the love fest from the birthday is behind me and I am unacccountably grumpy - the weather is dreary and R is sooooo stimmy.
A proper sensory diet is critical to all of our wellbeing

We go to the Mall and of course R makes a beeline for the Apple store. He is terribly stimmy there. Fortunately all the kids are very ill mannered- shouting, screaming and running around like angry dervishes,  and R does not stand out at all. ( When I look around at the moms I am comforted by everybody's  sheepish harried look that mirrors my own )
Amidst all the converstations going around us  - I overhear a mum asking about the Iphone App for Autistic children - ( how do our brains pick up the relevant things like names in an airport ?- is a marvel) .

I evasdrop but the Apple guy has no clue.

I feel such a bond with moms of Auties and I want to hug this mum and tell this mum about all the PECS etc that we have and ask her if her son can read, brainstorm on ways how "we" can help him  etc etc.

There is a thin line between people who have restraining orders against them and those that dont. Luckily good sense prevails and I choose to stay this side of that thin line

Monday

I cannot come back from work early and I am VERY VERY grumpy and badtempered as I do not have ANY time with R.
 its all eaten up in the logistics of the evening's activities

I scowl and sulk my way through the evening feeling VERY PUT UPON and martyred

Ironically we had an event at work when we had to tell the other person the main thing they liked about each other.- the thing that everyone likes most about me - its almost unanimous is my "positive outlook" "ray of sunshininess" "sense of humor" .

If they could only see me now

in the night when r is in his bath - as I leave the room to take a shower myself - R quickly says  "twikuh twikuh"and blinks his hands in the universal way children across the world gesture to twinkle twinkle little star. I am so touched that now when he wants me to stay he does not simply cry - Instead, he tries to Floortime with me

I have insomania in the night and finally toss and turn my way to sleep at 3 - turning the pillow round and round for the cooler-other-side- going over my onerous to-do list in my head!

Tuesday

DH is off to play golf !

Surprisingly( and charmingly )  the weather forecast is all wrong and the sun is out ! How great is that !!!

I make GF Pizza for R, Tomato Basil soup ( all ingredients from DH's garden )!

We play outside and R simply does not want to come in - Lucy calls to ask about how to save email attacments - and I am so sleepy it takes me a long time to understand what she is asking - finally we laugh and I give up and I ask DH to stop by on his way home

Due to no sleep last night - I fall asleep at 9 and have a hard time waking up at 6 which is a pity as I slept with wet hair and it looks like I have a hedgehog on my head in the morning and have to spend aeons straightening it in the am

R is  always so thrilled when I put him to bed . he keeps wriggling happily - jumping from one  side of me to another

He is also ( like me ) a compliment junkie !

When I wake him in the morning I always tell him how beautiful and wonderful he is - and he starts his day preening with pride .  I notice as I am getting ready in the morning and he is watching TV and eating breakfast - when we talk about him he presses the Pause button and listens carefully!

Wednesday

The rain holds off and its a marvelous evening - eminently ordinary but still marvelous.

DH and I see the Season premier of House - House is finally redeeming himself and I am so thrilled.

 R and I take a long walk with him in the stroller . We try to play out the scene of the Wonder Pets rescuing the panda and it does not work too well but we still have fun

Suddenly in the bathtub he realises he does not have the number 2 and runs around urgently- wet and slippery- but alas the 2 is elusive - even though he hunts in the car diligently as he remembers that  had carried the 2 with himself when DH and he went to get flowers for my birthday.

R now likes me to say the numbers backwards 100 to 1 when I swing him
This happens once before and he had started to cry when I said 1..2...3..and then I guessed and reversed the order
today I decide I will teach him to show by gesture to say ( instead of guessing)

1. sign for 100
2. say the word  "to"
3. sign for 1

he gets it immediately and is very triumphant - I suppose there is the added reassurance  of now knowing how to ask for something and therefore knowing he can ask for it again

what they say about teaching  a man to fish is right