To take joy in our children

Little C who is 4 years old  is styling my hair  with her play set is asking me a question

What color do you want your hair to be? You can choose pink or purple? 

Are those my only two options? I ask

Yes ! she nods solemnly...

 "You should choose purple" she further  advises - after taking my skin color and clothes into account!

"Will you come visit me to touch up my hair? I ask

"I can't "she answers "I dont know how to drive quite yet "

At this, we all burst into laughter

We are at a friends house . Her  mom - is expecting a second child in January

Last year she and her husband were considering having another child - She is older ( early 40's though she looks very young )

She told us that she almost decided not to - for fear that something could go wrong

But she said that by being with us she had realized that life could still be very good even when things don't go according to plan

It  is true

Our life is very good indeed .

Saturday  was a snow day.

We dont get a lot of snow here in TN. But we deeply enjoy what we do get

Snow is always pretty

But when you see it through R's eyes-  snow is  magic .

Our ordinary neighborhood is a land of enchantment

Everybody is inside their houses

The road is empty except for a dancing R

He points to the trampoline

The trampoline is covered in snow.

I patiently explain we can not

R persists

I tell him to use his words and he says  "Puck bee upp"( pick me up )

Unable to resist the spoken word - I pick him up and put him in the trampoline

"Come Iside"( come inside) he beckons to me and though I have pulled my back this morning - I am unable to resist

And so we do

We jump on the trampoline, slipping and sliding

But somehow not falling

One of the things,  special needs mommies struggle most with,  is the thoughts around what might have been.

They imagine their child without the disability and with the struggles and it can break your heart.
Further, its easy to be around children like C - hear their adorable prattle - and to be filled with wistfulness

But there is a big  problem with that

That problem is that not only does it stop you from enjoying other children , but worse,  it blinds you to the beauty of the child you do have

As I am picking up R's babies--- doing my put-everything -in-place rituals of the night -(  Linny and Tuck and the unattractive but oddly adorable Backyardigans) - I think  of the world that R has opened up for me!

A world  where Turtles rescue Dinosaurs, and rocket ships with little children in them fly

Where my plebian neighborhood is a wonderland just because of snow ,

Where our 18 dollar Walmart Christmas tree with its tawdry jewels is a thing of promise
Where you jump on trampolines and swimming pools -come rain and snow

Where being in an airplane is a privilege

Where, I ,  myself have been reinvented

For when I look at myself through R's eyes I do not see an ordinary, weak person

I see a strong and  kind woman .. a person both deeply beloved and capable of extraordinary love

The big fallacy is that life after a special needs child is doomed

But  this life of mine  is proof that it can be full of joy -if you open your heart to the world that your child  will create for you

A special needs child ( or indeed any child ) can be your special purpose child .

"Nothing is good or bad .. its thinking that makes it so " says Shakespeare.

"Shee Mother "( sleep with mother ) bargains R craftily from the bathtub

( his Dad usually puts him to bed but R is sulking due to being scolded for leaving the bathtub -streaking through the house wet  )

I get ready for his performance extraordinaire .

For R is able to produce tears on demand. I am not disappointed

After none of his tactics work - he holds my face and puts his nose to mine - looking into my eyes - assessing my resolve

"Shee mother" he coos - one last try - rubbing his velvety cheek on mine

I hug the great fortune that being R's mother is to myself- reveling in the sheer deliciousness of his ways- even as I tell him "Shee Pa" ( sleep with Papa)

"Don't worry about us " , I tell our acquaintances with NT kids who see us as hardworking parents with the onerous task of taking care of a handicapped child " we are very happy "

Though they look unconvinced - unable to imagine that we mean it- its the truth

This child - this life - is no burden

This child-my life is a gift

Why Children with Autism dont talk ?

“Is he saying anything yet”?

This is the invariable question that we used to get from R’s grandparents every time they called.

R’s grandparents have a very simple view of Autism (especially my mum and dad) .

They think R is a quirky kid (my side of the family is full of people with borderline aspergers so the spectrum of what passes for normal is pretty wide).

They see him as an intelligent child who basically cannot speak.

This is true to an extent but its not fully true

Especially if you think of the corollary – which is that they believe that speech will come (automatically) and that R will not need anything else once speech comes

Of course we have spent a lot of time thinking of speech.

This spring, DH and I said it out for the first time.

 I was doing my usual picking up before going to bed and we were getting ready for his IEP meeting.

You see, I was starting to feel that speech would never come.

But I could not bear to say it out aloud

But that day I said “What If he never talks .. Have you ever thought that could happen?”

DH sighed and said “Well we need to look into augmentative devices “

I sagged with relief.

Just saying it out loud felt like a weight had lifted off my shoulder

Its best to take the bull by the horn in most things and certainly that is the case with Autism issues

Fall has come and my fear is slowly ebbing

Speech had many hurdles for R. There were lots of gates that had to open before speech could come.

While I am no expert in Autism – we did spend a lot of our waking hours working on speech and thinking about it

I know this was the biggest question in my head in the months just before Autism.

I am writing this all down in the hope that it may help someone else( its long and its kind of boring and most of the autie mum and dad readers of this blog know this already. Also I am sitting in a plane with plenty of time to pontificate  )


Gate One

Auties think in pictures not words.

Imagine thinking of everything – only by the thing itself and never by the way it sounds ( which is the spoken word )

Symbolism is a critical step that is missing for many Auties – If you think about it all words are symbols – so the way the word "coffee”sounds – is a symbol for coffee

I know in our case some rudimentary pretend play( which also uses symbols ) has come along with speech

They way to cross Gate one was of course to skip the sign and skip the word – but communicate mostly with the use of PECS ( Picture Exchange System)

While PECS are a symbol – they are a much more direct symbol than the spoken word


Gate Two

Lack of Joint attention and Social Engagement and Referencing

Due to a variety of reasons ( overwhelmed by all sensory overload or under-load ), auties are paying attention to other things in their environment - not just the people – the humming of the fan , its circular motion etc

NT babies on the other hand spend all their time focused on their caregivers

Watching the mouths of the people moving .

Watching for the sounds in the environment from these people.

NT babies are learning about language constantly from the minute they are born becaue they are programmed to do so.

Just try this on your drive home today - look out the side of your car to the car in the lane next to you.

Almost every time the driver will turn and look at you. ( if not you can diagnose autism right there on the spot - just kidding LOL)

Because Neurotypicals are constantly in a state of social referencing



Gate 3

Inability to imitate

Much of early learning is done through copying .

In fact a theory says that some Auties are missing mirror neurons.

(Mirror neurons help you feel the way somebody else if feeling even when they are doing an action that you are not doing – Example how our mouth waters when you see someone else digging into a tasty meal even though we are not eating l)

I remember a key moment when I noticed that R reacted a little differently – we were driving back from DC last Fall- my MIL and SIL were with un in our Minivan

My SIL yawned and of course the rest of us started yawning

The only one who did not was R


Gate 4

Understanding the purpose of communication

Many auties do not understand that they can ask for something in order to receive it

Even in their early days - many of them have not spend countless hours in the back and forth response with their caregiver

NT babies who spend a lot of their baby hours doing just this and understanding the reciprocity of human interaction – cause and effect

Give a smile to get a smile

The ways to open Gate 2 and 3 and 4 is of course one on one engagement with the caregiver – especially something like Floortime/Sonrise /RDI - to use what motivates them in order to create these buliding blocks of development



Gate 5

This is our special cross to bear – Apraxia .

Fortunately, not all Auties have this problem

This is where the person is unable to make their mouth move the way they want it too

Its proved to be one of the hardest challenges our child has to deal with

However - this gate too - is opening slooooooowly but surely

We are using the Nancy Kaufman principle of using word approximations.

Even making sentences where each word is an approximation – and now that I am noting and recording – I find that R has a fairly decent vocabulary (very behind for his age but much ahead of what I expected )

Gate 6 and so on

Many barriers still remain of course. There is so much practice in language and comprehension  that auties miss.

 Plus even while the building blocks of joint attention and engagement are being created - they need to be strengthened almost continuously.

Because the call of the rest-of-the-stuff their sensory system is seeking is loud and insistent!

R’s apraxia is brutal and even as we are overcoming it I am aware that there are countless hours of language practice that R has missed and is missing- as we speak


But we are definitely on our way

This really is such a long post

But maybe a parent with a newly diagnosed child will read this

And know that the road to language has many barriers but these barrier can be overcome

The way to overcoming them is to observe your child, identify the barriers and then systematically overcome them.

To never simply wait for a miracle to unfold.

This Spring we were afraid that R would never talk

But by Fall – in spite of the fact that all the odds were against R ever talking – I know he will

Now when his grandparents call

R uses the few words that he has – "Hai" he says in greeting and "Gud by" ( good bye ) he says in Farewell after listening to their doting adulation patiently

And each hard-earned word is music to our ears

On using your own eyes

We are at a friends's house for Thanksgiving

One of the guests is a teacher who is a retired Special Needs teacher. She has worked a lot with Autistic children over the years

We are having a great time at the party and we have brought along R's Macbook ( actually DH'sbut when travelling it becomes R's )

He is on the Playhouse Disney Site looking at Ooh and Aaah ( two monkeys )

I and the hostess are standing around the kitchen island .

The retired teacher looks at what R is doing and says " he is liking the screen becasue of all the shaking and the moving images.. Autistic children love things that move"

I look at her - a little taken aback

She has just relegated what R is doing to a state of mindlessness

( and he is ever mindful )

A while ago  I would have felt stung

But not today

I look at what R is doing and reply

"not at all .. he is playing a game - if you click on the instruments you can make the monkey characters play that instrument .. and you can keep adding different instruments till it turns into an orchestra .. he loves music.. you see "

She looks again at what R is doing and then nods her head

Its an important developmental leap for me to  trust our own eyes the most

A friend of mine - Debbie - gave me some great advice a little while ago

I was expressing anxiety about going to India

This is the first time we are going after Autism.

I am not looking forward ( to put it mildly ) to having to explain Autism to everybody

But this friend said that the important thing is to look at your child through your own eyes and not as others see him

I have been chewing over this profound thought

And this Thanksgiving I got to put it into practice.

My anxiety over this has simply dissipated with this simple perspective

This perspective is very different than learning how to cope with people's reactions to our kiddos not looking like other kiddos

I knew that always

Followed the principle of - if R was not bothering anyone  and not hurting himself - he was fine to do what he wanted 

Even if that thing was to coo at all  aisle numbers, sit down in the birthday aisle gasping with wonder at all the birthday cards around him that said  you are 1 .. you are 4 and so on and so  forth

This perspective is about not letting just anybody's else's impression of your child influence your opinion of your child

Its about being selective about the persepctives and the advice we special needs parents get ( sometimes on a daily basis )
That was about steeling oneself ... learning not to mind .. training oneself to not always be in the mode of correcting your child ( for things that are not even wrong )

This is about not minding at all

This is better!

Acceptance

This weekend we went to Chattanooga for a visit with some close friends.

These are such dear friends and we have been known each other for a while

And yet I was a little nervous before leaving.

One of these friends has a daughter the exact same age as R- we went into labor at almost the same time

Sometimes meeting neurotypical children is a bit of a shock -

Especially when you have a child like R whose expressive speech is so severely limited

But these friends are have such open hearts for us ( with all our differences )that R is folded into this group completely and naturally

Many people say that when they enter into the special needs world - friendships die

For us however it seems like the good friendships have become  stronger and the weak friendships have faded ( not ended .. just faded away ) 

As though Autism was kind of a filter that separated the wheat from the chaff

We planned best as we could - with written schedules etc

I braced myself for a shot of reality- for my bubble to burst 

But all my fears are unfounded as R is an  angel

Interested in everything

Well mannered and charming, affectionate and sweet

Here is R with his birthday friend E

E's mum whispers in my ear - your son has better manners than my daughter ( her daughter is a complete darling and a perfect doll but her  casual  compliment is music to my ears  )

Really she is too wonderful and makes it a point to compliment R on all his special gifts  -his reading etc

The trip starts really well as - the   Creative kids museum is PARADISE for autistic children - filled with things to touch and feel

Water play,  Magnets, Musical Instruments

We have dinner at Sticky Fingers and R is just awesome there as well- eating his Chicken Fingers with gusto

Sitting quietly in his chair ( only needing 1 or 2 bribes of Dum Dums ) and coloring ( poorly)

Then we go back to the hotel

The day has been so tiring that I am sure that R will burst into tears when we go out again

But here the power of the written schedule comes into being .. where its clearly written that the last thing on the list is Christmas lights

He simply LOVES Christmas lights.  And he is ecstatic at the entrance of Rock City to see the giant Star

There is LOADS of walking inside but he has a blast

Unexpectedly-He even sits on Santa's lap

It seems this fifth year ( which BTW is supposed to be end of all developmental leaps ) in fact is showing promises of good things to come

Its the season of gratitude

My heart just brims with it

For friends who have stayed true and strong in spite of the road that life has taken us on

For wonderful  friendships  that we have found  because  of this journey

For a marriage that challenges have strengthened 

For a child that continues to blossom well beyond what "Early intervention" folks would have us believe

This journey into special needs land is settling into an an unusual  place.

A place of acceptance

An acceptance, that I once thought meant giving up

But which I now see as a lovely place of grace

A state of mind , a way of being,  that is both charmed and practical

This is my new normal

And its a good place to be

Speak softly

“You know one thing I know about C is that he is always listening ... we went back to my mother’s house and he told me all the time when he was 3 and I was reading him a book .. What that book was .. what the story was..The funny thing is I remembered that day clearly as well .. I was just thinking in despair how he was sitting there just like a lump on a log”

One of my friends is giving me this great advice- we have met for lunch at Romano’s. This is a year ago

She is a friend I met at a local Autism support group and we just hit it off. Of course since we both are working moms with kids with special needs – we have basically met once in the past two years.( though of course we keep wondering why we don’t meet more often – I seem to have such a plethora of wonderful people in my life that I cannot find the time to really connect with – I suppose its better than the opposite alternative )

I made a mental note of this very good advice.

Many adult auties have expressed this same wish.

They have talked about how much it bothered them that their parents spoke about them – and their worries about them – in front of them.

Unfortunately I seem to be one of those people destined to learn from my own mistakes – rather than learning from others

As R’s receptive language was a long time in coming I thought that this must not be true for him!

Then a few months ago I taped a therapy session.

When I was going through the recording (by profession I am a researcher )- I automatically switched into researcher mode and started paying attention not only to his enunciation – but to his body language

Heart sinking – I realized that he his entire body language would change – each time I said something bad – expressed some worry

When I said something good – he would perk up and would be able to say the next thing better.

With remorse I thought back to all the times when I discussed him - in front of him

Slowly I am coming to realize that even in the situations where he is CLEARLY doing something else – he is STILL paying attention when anything relevant to him comes up( the way we are able to pick out our name in the airport in the din of announcements- but filter everything else out)

Yesterday as we were out in the front yard – and Mrs C and J stopped by to chat- R ran away to explore whether the red berries in the bush were skittles or not.

Mrs C asked if R was liking the Fall leaves .

I replied that his Dad has made a pile of leaves at the end of our backyard

R swung into action – picked up DH’s rake and jumped into the pile

The other day when a friend gave him a dinosaur which he ignored – I saw him a minute later – researching dinosaurs on the internet!

Now that I am paying attention - I notice how much attention he is paying

Hopefully some mum or dad is reading this and making a note to be careful of the worry they express in front of their children.

Words can wound deeply and our children are so sensitive

It really is best to presume intellect and to presume comprehension.

And to speak softly because someone is listening

Weekly Round up W/o Nov 16th

Monday

it was a simply gorgeous day and I got back home in time.

DH re-engineered our I-MAC so its now super powerful .

Its funny how R gloms onto the best computer- all of last week while the I-Mac was slowing down he was lusting for DH's Macbook .

Today,  because the IMAC is back and better - he will not touch the Macbook with a barge-pole. He shed many bitter tears as DH was loading programs into the I-Mac - alternately pleading and weeping - for DH to move away so he could get on it.

When I suggested he use the Mac-Book - he looked at me with disbelief at the preposterous suggestion

I quickly wrote down a schedule to play out side and we went out

We jumped and swung and played with all the leaves

I put him to bed tonight and he was VERY smug though I struggled with insomania tonight as well .

He has been googling different versions of the song"One two buckle my shoe".

I think its very confusing to him that I have taught him the song with 2 different endings ( Nine Ten - A big fat hen and Nine Ten - let's do it again) and so he is looking on the internet for what is the right version.

This turns out to be a hopeless quest as the song on youtube goes all the way to 20.

Tuesday

DH and I have a date lunch which I enjoy very much.

Much to our amusement, have noticed that the server at this Asian restaurant  - puts only the Asian people at the window tables.( we go here almost weekly )

Whereas all the Non-Asians usually have to sit towards the center. The window tables are visible from the outside I suppose they want to position themselves as authentic Asian.

But I have a plan today and as soon as I enter - I point to a window seat and tell her firmly

 " I want to sit here - is that okay "

She is nonplussed and is forced to say "Sure"

Its a moment of great triumph for me

Becasue of the travel  we  have not been able to get together on our own and I miss it a lot

Usually we try to talk about non - autism and non parenting issues - but today we forgot about this,

Nevertheless we  a really good chat about autism ( casues and cures )

DH is very smart and very sceptical so he is always interesting to discuss things with !

He beleives Autism is a genetic mutation - nature's response to the way the environment is evolving . He believes all the  other problems that can co-exist with Autism( Apraxia ADHD etc)  are separate from the Autism itself .

My theory is genetic predisposition + environmental insult= autism and then the modified sensory system - leads to the autistic features like stimming, poor peer interaction


Both of us are trained researchers and we frequently find ourselves drawing different conclusions from papers and articles that are published about causes and cures of Autism .
It seems so often that they author has a point of view which is biased and which they are trying to sell

An extreme example-  the Cornell Study which said TV casues Autism -
The data showed that colder and rainier areas have more autism - the authors saw that there were more cable subscriptions in these areas and concluded that TV casues Autism

We both agree though that Autism is a gray area land and even after 2.5 years of being really absorbed in it - ( and I mean really ) we still dont know a lot

DH said "Sometimes I dont even know what Autism is anymore "

And there is truth in that

I really think what we have done -which has been to focus on what R needs rather than what he has
is the right approach

We just need to do more of it

In the evening we really have a nice time jumping and playing with the leaves. - There is a mountain of leaves that DH has piled up in our backyard which affords  great joy to R !

Wednesday

I have to stay late in the office . Sigh !!

When I get home, I  am surprised to find that R avoids me -he averts his gaze and looks fixedly at the computer

I go to ask DH if R is in trouble.( as he tends to avoid me when he has a guilty conscience )

DH says that R broke his glasses in school

Sure enough when I get back to the room - I see R is rummaging in the drawer where we keep the spare glasses

He has a wound on his nose ( where he scratched himself and where the glasses now rub and so he keeps taking them off - which is how they broke )

I hug him and tell him not to worry as I should have cut his nails and I know his nose was hurting. Its really my fault and not his.

R cheers up tremendously and we run out to play in the damp and wet evening

A special birthday for a special boy

I do NOT  think R really enjoyed his first 4 birthdays .

This had us sad because  birthdays are so important and we really want R to enjoy them

Birthday 1 - we did a birthday party with a friend - who also had a baby on the exact same day as R  - R seemed stressed

Birthday 2 - Thought he would enjoy more if we had  a party at our place - R clung to me all evening and ignored everybody

Birthday 3 - we gave up on the drama - but my mum was visiting and not feeling well so we took her to the doctor's. Fortunately she was fine but we were too exhausted to do anything special

Birthday 4 - my MIL was here. We bought lots of presents for R which he sort of liked and sort of ignored- Plus I had gone for the Floortime conference in DC and we drove back that day( 500 miles from DC)

Birthday 5-  But this year on his fifth birthday - I think we finally got it right !. ( Rachel he was enchanted with the gifts this time )

There are two reasons for why it worked

1. We finally figured out what to do

2. He was finally ready to enjoy it .

First, we started telling him about his birthday almost a month in advance

One very interesting thing we noticed is that he has been researching what a birthday is on the internet this past month .

Its so interesting that at the age of 5 he is already a pro at looking for  info on the internet ( another thing we caught his researching is potty training - which he spells as "poddy")

 He has been looking for you-tube clips on birthdays  all this month

He has also been asking to see the TV shows that  have birthdays in them - like "The Birthday Machine" of Little Einstein

We asked his teacher to do a little birthday party for him and we send cake- DH iced it beautifully and wrote  a message on it -

This is a BIG hit  (  all the you-tube clips he was watching appear to have cake  featured as a key element in the birthday- so we really lived up to his expectations there )

His teacher is a darling and was more than happy to do this. Apparently his birthday party was a grand success

We got him a card shaped as 5 as well as a candle in the shape of 5 - which made him just ecstatic.To his mind this is not only logical but also includes his great love - numbers!

Even the presents we bought were all thoughtfully selected to be custom to his taste

The box of Dum Dums ( we bought a HUGE bag and I sorted through them all and picked out all the Blue Raspberry ones and the cherry ones which are his favorite ).

Plus the box which is in the shape of a present that is shown in most children videos - was a big hit

The other big hit was the furry ball

We also got him a scooter that he has been eyeing and the giant piano that we play with feet .

These - the more big ticket items have been met with lukewarm success. But his grandparents wanted us to buy some grand presents on their behalf. And so we did

Finally we ended with dinner at McDonalds . It was Monday night so the restaurant ( and we have a really nice McDOnalds next to us ) was empty so we let R climb all over his chair as we were not bothering anyone !

I think the three of us had the best birthday possible

It seems to me that - its like this with all of our life.

We have to abandon all the ideas of how things are  supposed to be.

We have to figure out what works for us and we have to courageously and single-mindedly pursue our happiness - un-distracted by any preconceived notions

Life's scenic route has come without a road map

But we are enjoying the ride

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

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 ? )