Happy birthday R

We are at Toys R Us this weekend looking for presents for R ( for one of the curious things about him is that he wants so little- DH and I must rack our brains )

We browse and make our list – wondering if we will get lucky this year with what we get for him !

On our way out - I stop by some electronic maracas – wondering if R would like them.

DH and I are engrossed wondering whether these would work with our Wii

I turn to look for R

And he is gone.

I run out of the store (for the stupid Toysrus has automatic doors)

He is not there

DH and I run to all the places in the store that R loves – the bikes( where he tried to climb on all the grown up ones- though he can barely ride his trike ) , the cars( where he loves on the car with the Barbie painted on it much to DH’s chagrin) , the Thomas the Train display which he adores ( while ignoring the identical one at home )

In a few minutes I have imagined a million awful possibilities!(Are mothers programmed to be the worst pessimists? Every mum I know is willing to believe that her child is in imminent danger at the drop of a hat)

As I am thinking that I will have to get the Toys R Us Staff to help us – the phone rings and DH is calling to say he has found R peacefully reading the books.

I am so angry with him

I wait by the entrance

When DH and R come out-I hold R by the shoulders and give the furious lecture that parents all around the world give their children they almost lost ( what a wonderful word "almost" is in this case- it makes all the difference in the world )

The “how- many-times-I- have-told-you” and the “why-cant-you-listen" and “do-you-know-what-could-have-happened”

I know he is going to cry

But I don’t care

I am too angry to care!

But - instead of crying – R holds my face and says “shoi ma” ( Sorry Mama)

He strokes my face – smiling gently

Tears fill my eyes –as I realize that I was not angry at all

I was scared!

I hug him and tell him he should stay close to me and that I would die if he got lost.

It just amazes me how this little child sees right to my heart.

Even the people who know me inside out, misunderstand

But never this child!

He knows what I am feeling .. sometimes even before I know it

I think back to the morning, when my colleague was describing a scene in the book Blink.

The author of the book, Malcolm Gladwell, talks about showing the movie “Who is afraid of Virginia Wolf” as an experiment.

In the experiment, auties and non-auties look at a scene from the movie .

Eye tracking reveals that the auties were looking at the things in the scene and not the people. With this my colleague concludes that auties are immune to emotion and all about logic.

I tell her that R is not like that - Not at all

He is more astute than most people I know

In the 5 years that I have known R – he has taught me so much and given me so much love

On his birthday today, I am so full of thankfulness for this wonderful, beautiful, miraculous child.

Its hard to believe that 5 years ago I did not even know him

Happy birthday sweet love!

I am so glad to be your mum

And he is back

R has chosen his sweatshirt

( I am proud to see he chooses his trendy  GAP over his other options  - he is my son- he instinctively chooses better brands -GAP over Osh Kosh,  target over wal-mart, real crocs etc. DH is the opposite of me and R and we get teased a lot for this  )

He runs his finger  over the logo on my sweatshirt

Tommy he reads ( for Tommy Hilfiger )

He puts his hand on my stomach

And looks up at me puzzled

I interpret his look correctly  and say " that means tummy not tommy "( for to him this is mislabeling as the word is written over my chest )

Its like this

All evening

Little conversations

Constantly pulling my face to him so he can kiss my cheeks and forehead.

Stroking my hair

He makes me sing songs.

Corrects me when I do an action incorrectly 

Urges me to bury him in piles of  leaves

His cold is leaving 

And he is back

Oh how marvelous to see him be himself again!

Happiness is washing over  me like a great tide.

"Its ridiculous how much we love our children" said one of my friends the other day " they will never know"

And its the truth

Far beyond any DSM IV criteria,  for me the measure of good times with R ,  are his "with-it-ness, his connectedness  and most of all his happy glow

When these are present - I can look askance at all the doom and gloom predictions that are handed to Autie parents! ( like the Buddhist saying goes "no one can look at a seed and say which one will grow and which wont ")

When these are not there, I am run with anxiety

I know there will be bad times again in the future

But for now

God's in heaven and all is right in my world.

To be an observer of your life

R lost his glasses today.
Its not a big deal. For such a small child – he takes remarkably good care of his glasses

I came home right on time, so DH could go for golf and I could do some Floortime – but Dh has waited a couple of hours already at Sam's without success and so I must go today to the Eyeglass place
And so I do
Which is a bit of a disaster
R is spacey
Pays no attention.
( I do the hold hand tightly +grit teeth+ drag – which is a bit extreme for me – but for some reason I have been very irritable these days – PMS + little sleep is a bad combination )

At one point he just randomly takes his shoes off and sits on the floor
Eyeglass world is inhabited by quiet adults – there are no rude little kiddos to distract away from R
I am simply appalled by his behavior
I pointedly do NOT explain apologetically (which I have done before ) that R has Autism
For Autism ( the kind that R has ) is no excuse !

The customer service lady who is taking care of us – is an angel
She says nothing at all – simply assumes that R can understand everything – giving him directions ( hold this, look through this )
Which he ignores of course

I need to be alone and I take a walk by myself in the evening

Suddenly I realize that I am actually melancholy today.

Some days (and I am blessed that these days are rare for I have a hopeful temperament) the mountain of things that R has to learn seem especially steep
How much more of Do this and don't do this must be there in my life?

As I approach the top of the hill I think about how I am the queen of giving advice (especially about looking on the bright side ) to my friends of special needs kiddos
Then why do I get so nonplussed and paralyzed when I am in a tough situation myself?

So I try to imagine K as a separate person from me

And try to imagine what advice I would give K if I were not her.

With a little distance from myself – all is clear
His spaciness is due to the chaos that has been October ( 5 out of town trips would be disorienting to a typically developing child – let alone an ASD one ) as well as the cold that has been plaguing us
I need to realize that this too shall pass and also step up on the sensory diet and the written schedules

A Buddhist saying goes "All know the way .. but few walk it ".

This is so true in my life.

It seems so often that I have all the answers to my questions
It's my ability to see the answer that fails me

But today I see it.
And tomorrow will be a better day.

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