Monday, August 31, 2009

On lovely moments

This weekend I have tried to organize chores so that the entire weekend is not consumed by them

I have vacuumed – changed sheets/towels etc in the evening while DH and R are at his Musical Gymnastics. DH has done all the food prep Friday night.

Despite massive amount of planning, I am low energy and depressed on Saturday because of the impending doom of travel on Monday .Traveling always distresses me

When my friends are travel on work, I advice them to enjoy their time away, from the routine. To not be a mommy- just have them to take care of. But I miss my guys dreadfully (in advance in fact) and its hard to take my own advice

It takes me a lot longer than usual to cook on Saturday as I move slowly.

On Sunday I open the refrigerator and sadly point out to DH what he should eat for all his meals

Clearly without this information, I believe he will stand uncomprehending in front of the refrigerator at meal times. He will wonder what to eat, finally, giving up in despair. I shall see him on Wednesday, pale gaunt and wasted away. (Though quickly revived by a meal that I nuke for him)

DH, used to my maudlin ways, pays no attention. (I am familiar with the look of listening-but-not)

But he also offers to drive me to the airport and pick me up.

After being together for 15 years, DH and I have become two halves.

We used to be whole people once,

But over time, I find that, each of us is becoming expert in an area and losing it in another.

Is it the way of all couples?

R is super kissy and huggy all weekend and uses his newly acquired K at every chance he gets

"Khum( come ) up" he will say holding his arms out to be picked up

"Khu-i-t" ( quit) he will instruct me on the Wii Fit

And then in Marshalls – which he seems to use like a library – when its time to leave –he looks at me pleadingly from a numbers book and says "kh-ou-tin" ( Cant you see I am counting ?)

I hear him often whispering ""khu khu khu "

I think he is also afraid that his lips will forget how to say it if he does not keep practicing.

On Sunday evening when I tell him its time to start his evening routine, he tries to quickly postpone the inevitable end of the day and says "Khaa Di" ( Car drive")

So we go for a drive, windows open.

It's a mellow evening. The roads are empty and the air is cool and fresh and has the feeling of Autumn( already!!!)

I reach my hand behind and R puts his hand in mine.

We hold hands and drive like this for a while. And I am filled with the sweetness and joy of this little child.

It seems to me that the all goodness of living is in moments like this .

"The butterfly counts its life not in days, but in moments and has time enough" said Tagore

And he is right.
 

Saturday, August 29, 2009

SOOC Saturday: The Happiness Magnet



I met someone sad recently.

His sadness - it was like a physical thing.

I think he is recently (and unhappily ) divorced . He has a way of bringing “my ex-wife” into the conversation.

A lot.

And sometimes he slips and says “my wife and I”( as in “ my wife and I love to cook!” ) instead of my ex wife. It tells its own story!
Me and my friend, take him out to lunch.We are the epitome of good Southern warmth ( though I suppose if you want to be specific – my friend is a New Yorker and I am as brown as anyone that ever stirred a curry )

Still we are not much comfort.

Though we try so hard and I feel helpless

While talking to him, I remember another person I met many years ago.

Its many years ago.I am visiting my MIL for Diwali ( Indian Christmas ) .

I am standing on a terrace looking down idly.

I see a man. He is carrying that same cloud of sadness.

He and the cloud stay in my mind forever. I can still see him, shoulders hunched , hands in pocket. Black sweater.

A year or so later, I meet the man again. He turns out to be a schoolmate of my DH ( DH went to a posh school and they are very cliquish) . I ask him about the other time I saw him.
He thinks back and says it was a very bad time for him as his sister’s cancer had returned. (she has since died since and life goes on) . He is still sad.

( I meet him again about 3 years ago. He is married and the sad air was all gone !)

Sad people have a different air about them .

Sadness is infectious

When I get back home I am feeling melancholy too

R ever attuned to how I feel inside.

He knows that when maudlin, I am apt to clutch him and weep ( as I have been doing this the past weekend while reading “The Lovely life” )and ask unanswerable questions( why is there so much pain in the world ?)

To avoid me, he gives me his therapists’ PECS ( sticker on which her name was written ) several times.

Even though I entice him with – Playdoh and stencils of numbers- he is astute and is not fooled by my pretend-happy!

Later in the evening, I use exercise to snap out of gloom – R notices and fawns over me effusively.

Truly its one of the strangest ironies of life that this breed - the sad - who needs friendship the most –does not attract people

Happiness is a magnet.

Sadness?

Unfortunately it makes us invisible.

There are so many social stories that teach our auties how to interact

So many scripts on how to make friends

And yet the constant teaching of how to act different – may destroy the most precious people-magnet that our kiddos have!

The happiness elixir inside them.


While we must learn to not just empathize but also help those people with sadness

One of the most impt lessons we much teach our kiddos is how to be happy

My little boy brims over with happiness.

Just look at him

Effortlessly , he is Mr Popular with all the people he cares about - therapists, teachers , my friends, his parents.


Of all the things that are almost unbearably precious about R.

Of all the things I hope he learns

I hope this thing he will always retain

The art of happy

For more fun with pictures and the stories behind them- or to participate yourself- visit Slurping Life- its a lovely blog - her link is on my list

Thursday, August 27, 2009

W/O August 22

Saturday

Is a day of drudgery! We have to take data for a set of tests so we are basically indoor all day and I am hanging out with R all day. Though R is angelic and patient throughout towards the 8th hour he has had enough


Sunday

Another madly busy day. We have a great team meeting with his ABA therapists and speechie. Its really clear how much they all care for R. One of the best things in this road is the number of truly nice people we have met.
His program is being totally changed which is good but will also be challenging.
He keeps giving me his speechies name from the PECS and says . “Come” and then hands me her PECS.( “Come” is a new word as he has learned to say K on Thursday so he keeps finding reasons to say it ) and also wants to practice more as he keeps giving me her name on the PECS. .
We go to toys r us in the afternoon – he makes long elaborate train and does not protest when two girls come in and break his train – he just moves to the side and starts building a new one – my chest feels like it will burst with pride.
Parents dream about lots of things- a sweet and well mannered child is my dream. I tell him he is a dream come true several times a day and it’s the truth.
He is mad for numbers once again and will count in his bathtub everyday with his foam numbers. The funny thing I noticed is that he starts the next day with where he left off the last day. And again he always stuns me by taking one look at the huge mess of numbers and knowing what is missing .
The afternoon is cooking for the week – DH chops a massive amount of veggies and chicken – which I then cook for the week . And the evening is playing with R and then us doing two rounds of laundry
I am dead tired but cannot sleep AT ALL – I know not why though tomorrow is a busy day at work. I notice amusedly that R is having a nightmare – the kid dreams about numbers - and yells out “Eight”.
I pat his chest and say “Of course its 8 “ This soothes him and he falls back to sleep again.


Monday

Because I did not sleep at all last night I am dead exhausted in the evening but as soon as I am home, DH demands snacks and R demands Wii . I get DH some cookies and nuts .
And R and I we exercise on the Wii ( basically R chooses the exercises for me and I do them ) . This is great speech practice for R as I make him say whatever he wants me to do . So he has to say words like Quit ( kuh-i-tuh) of Start ( Stit) etc .
Then we run outside and jump on the trampoline for 30 minutes. For whatever reason the weather is marvelous and we have a great time. Then we swing for a while and R starts to nod off .
I do his dinner and all the Wonderpets and Backyardigans drink Sprite-water with him ( Yayyy ).I give him a bath and do his sleep routine and actually go to sleep at 9 by the time he does. It seems only a minute has passed but DH is tapping my shoulder to wake up as the alarm has gone off.


Tuesday

I see Julie’s post on homeschooling lessons which inspires me. So I decide to teach R the concepts of opposites this weekend. Luckily I happen to see him later on the computer doing opposites on starfall – flawlessly !!!!
Its so hard to figure out what he knows and what he does not know


Wednesday

We go to the eye doctor. His power has not changed all that much

Saturday, August 22, 2009

SOOC Saturday An ordinary garden variety miracle

Pretend play !

These two words have often made my heart sink. Many developmental psychologists - especially the Flootime psychologists - stress the great importance of pretend play

But this particular ability just would not come in my child

I sought advice from all my friends whose kids were able to do this, bought playsets of what R liked to watch on TV - the Little Einsteins. the Elmo figurines, this last winter even a dollhouse with all the furniture, the Little People everything

Our house started to resemble a toy store

But, though, this child was interested - labeled everything accurately - he never played..

Until this summer

Suddenly now when his Dad takes him to the Mall on Fridays for their lunch date - instead of running to the Apple Store - he now pulls him to the kiosk with the stuffed toys.

He has been eagerly choosing a Wonder Pet and then a Backyardigan each time.

Then he started taking them places.

Then kissing them goodnight

And then just the other day - after he had finished drinking his drink

I watched with my eyes filling with tears of joy as he put Linny, Tuck and Ming Ming turn by turn to get their drink as well !

My friend Jos said something once - much before I entered the special needs world myself - about her daughter L -

"I believe L will do everything , but in her own time. I dont mind .. she can take all the time she needs .. but I have faith she will do it all."

Last night as R took Tuck with him to read a book in his pre bedtime swing, I thought of Jos's words again and wondered how freeing it would be if I just assumed that it would all turn out all right.

Had faith that R would do it all- eventually.

Just concentrated on providing all the learning opportunities

Without worrying about any outcomes - assured that they would come - eventually

Because time and again it seems that R is on his own timetable. But is also in his own way, developing beautifully.

Goodbye Worry .

Go away and stay away.

And take your toxic friend Fear with you too !




For more fun with SOOC Saturday visit Melody's wonderful blog at Slurping Life.and check out the other great Saturday photos - Her link is on my blog list

Friday, August 21, 2009

This child will prevail

YOu have all heard me lament about how bad the Apraxia is

And in real life DH and I often talk about just how slow speech seems to be coming. Though we have a simply marvelous speechie now that we ( and R ) simply love . So he has had quality speech therapy from someone who really knows what she is doing and who he adores for a year now!

Still his Apraxia is really really bad

I dont usually attend his therapy session - its my time to hang out with DH, work out or do all the odds and ends that need to get done.

So when the session is over I can spend time with him.

Yesterday I thought I would record his speech therapy session. If we took a video recording every few months. Then a comparison of these recordings would be a better indicator of whether he was talking better or not.

His speechie had charts of categories ( things that are cold, things to wear etc ) and R is supposed to pick objects out of a bag and categorize them. He was doing this flawlessly but the thing that is the speech part of it is that he has to say out loud the name of the object

Here is a small clip of him saying the word "ice"


Sometimes his tongue does not know where to go.

So he cannot say sounds like "k". His speechie uses something that looks like a toothbrush to touch the part of the mouth that he is supposed to touch with his tongue in order to make that sound.

Yesterday I noticed something quite marvelous.

Whenever a situation came where he would have to say the sound "k" he started trying to put the brush in his mouth or hand it to his speechie so she could help him say K.

R's courage and hardwork inspire me and move me to tears all the at the same time

But mostly I feel full of hope.

With the kind of spirit that this child has, he WILL overcome!

Saturday, August 15, 2009

SOOC Saturday - Being Loved Part Two

Its 2007.

I am listening to a doctor's presentation on the medical treatment of Autism.( considered alternative treatment by the mainstream medical community )

His own son regressed into Autism.

He is describing his son's regression."Z stopped using words. We slowly noticed that he talked less and less"

He adds sadly ""For Z, Mama" was the last word to go"

Mama!

This last bit, breaks my heart and I leave the room filled with pain for the unknown Z, who hung on to the comfort of the word - Mama -for as long as he could.

But Z's mama could not help him. And neither could R's.

This moment- having this feeling - stands out in my mind as signature of my feelings that year.

Sadness, Confusion, Anger, Guilt

Two years later, as I am getting ready to change my Autism car magnet from "Autism Awareness" to this new one, I think about how symbolic it is of the journey I have been on.

In the beginning, Autism advertising and programming filled me with fear, (though I obsessivly watched every program and read every magazine)

Would he love me no more ?

Would my child turn into a stranger?

So hard to believe.
For R even in the midst of a regression - even while losing skills - seemed his own sweet self.

Surely what makes him R, was more than what he could do

If the awareness and fear side of the Autism debate, felt not quite right, the neurodiversity movement was not a perfect fit either.

It never felt right to congratulate someone when they find out their child has autism ( though I love autistic people.)

Nor did R ever feel like he was from another planet.

He is so much of me and of DH.

In this confused time, the only thing that made sense was to learn more about Autism.(And indeed, I did this with obsession)


That was the year of Autism Awareness. And so my car said




It was the time of wanting to read every book,every "rescue story" that there was, searching for the magic answer in the black and white.

But even in this time of fear and worry, the love and the sweetness of this child, made me wonder-is my life really so bad?

And slowly I started to dislike the portrayal of ASD children in the media - especially the implication that ASD kids are burdens on society and their parents.

(What a toxic atmosphere that must create especially for the child )

Moreover, R's weight sits lightly in our arms and is precious beyond words.

As more time passed, I have come to realize that

To me its not all about curing Autism

Nor is it all about celebrating Autism

There are many people talking about those things already and they are right in what they believe in.

But for this mother, its about celebrating this child

"Every child deserves to have his mother's face light up when he walks into the room" my friend Heather quoted Maya Angelou the other day

When all is said and done, this is what R needs above all else.

No longer in a place of fear, I have stopped looking outside and I have stopped looking at far away tomorrows

I look inside our lives and I look at today

And life is beautiful .

Because someone with Autism loves me




Here is Part one of this story.
Thanks to T for the suggestion after Part One

For more fun with SOOC Saturday or to participate yourself visit Melody at Slurping Life

Wednesday, August 12, 2009

Weekly update w/o August 8. Tick tock tick tock

Well I have not done this for a while !!

While this is probably boring to read - I really like having a record.

Sometimes reading a journal is like looking at pictures of your vacation.

For a minute you are there and feeling what you felt.

Saturday

R did his therapy in the morning while I cooked – in the afternoon we went downtown for an Open Doors program.
He was very intrigued by a kids’ birthday party balloons - some smart parent had decided to have a party in the park –especially as one of them was Thomas and had "1"written on it.

Another boy who was guarding the ballons jealously – pushes him away.

R simply ignores him and keeps trying to make his way back to the balloons. I quickly intervene and explain how we cannot touch anyone else presents.

The kid’s parents watch nonchalantly – both of them smoking- one of them blowing very artistic rings.

In the autism fair, some services are advertised and 1-2 looked promising ( art and dance ) but I really don’t want to add anything new to his schedule as school will start.
In the evening we jump swim and swing.

After dinner I ask R if he wants to go shop ( tax free weekend ) or do some computer time before sleeping and he chose computer

Sunday

I bake cookies in the morning. R took the sound of the mixer to mean that I was pureeing vegetables for him and he runs into the kitchen - urgently chanting "pissa pissa"( pizza )

I give him pizza which he eats laconically . His pleading was not for the pizza but as a means to avoid the vegetables.

After he eats - we take advantage of church time ( all of our town’s people are in church from 10 -12 ) and this means that the stores are clear.

So this is when we shop- to buy his school supplies.

I am proud to see that when given a choice R chooses Target instead of Walmart ( just like his mum ) . I sulk a little at the store as DH overrules all my suggestions of buying the prettier expensive branded things – rather than the plain white store brand and I get in a huff.
DH mollifies me by showing that he is buying “triclosan-free” handwash.

We come back from Target – and jump swim and swing- Then bath and lunch for R.
The house is filthy but I am not in the mood to clean – even though his therapist comes to continue with the ABLL’s and stays for 2 hours. Its taking her a long time to do the ABLLS – but she says its because he knows a lot more now!

After she leaves, I feed R dinner – as we are all going out to a friends’ house – his second son has been admitted to Yale( the elder son got a full scholarship to Vanderbilt ) and is leaving now.

I smile a little when I think of how when I had first met them I had mistaken their adolescent son’s awkwardness for a disability but had been too polite ( thank goodness ) to ask.

Most of these people who have come to the party of Indian origin and they are boasting about their kids academic achievements. I have never seen a culture that focuses so much on their kids academics.

I still remember if I scored 97 out of 100 – my mum would say – what happened to the other 3 marks? Or my Dad would say comfortingly – don’t worry you will do better next time.

R is a pillar of virtue and apart from smelling a lady’s sari and lying down on the floor – he behaves like an angel.

He tries to avoid my friend’s two little girls who want to hang out with him and drags me a couple of times to the car !!but is otherwise content to read his books. My friend looks worried when she sees him read a book on countries of the world. I know she is thinking that she should get her daughter some more educational things.( she is from India too).

Little does she know that I have been gazing admiringly at her daughter’s making a picnic area.

Monday

R is computer mad and I tell him after the therapist leaves that he has the choice between computer and Jumping and he chooses computer.
I tell him that this means there will be no jumping and he agrees. I cross out Jumping on the white board to drive home the point.

Later when he realizes that I am about to start his bath routine he does his angry dervish dance. He says earnestly ” Jump Jump jump” !!!!!

Turns out he wants to jump – he did not want to do it at the moment when he was given the choice – I show him the board again and remind him of choices and consequences.

At this written proof he is quiet. we play in the bath tub for a while. I bring out his foam letters and number and he is ecstatic – but soon this idyll is disrupted as he realizes ( like in 10 secs ) that 8 is missing – he knows he has seen it in the bedroom where he had lovingly put it earlier .

He runs around wet and slippery.chanting eight and frantically showing me three fingers ( for that is how R counts – not in 10’s but in 5’s )

We locate the 8 and R coos to it and puts it back in the bath with much ceremony
After this he wants to swing and we do have a swing inside the house that he loves now ( in total we have 5-6 swings and 2 hammocks in the house ) and so we swing a 100times

Tuesday

I am dead tired as I woke up at 4 to go into work – but we play for a while till his therapist comes
Then we jump and swing – WHen we return inside the house the family room is empty.
DH has gone to attend a meeting against the electric company that plans to chop down tress when we re-enter the house. Since DH is not there - the TV is up for grabs - R leaps upon the Wii remote – saying uff uff uff- SO we do the Wii for 20 minutes and then do dinner etc.

In the bathtub we play for a while with the foam letters – I write the word QUESTION and he turns that into QUIET . For he is into numbers today and does not want to play with letters.

I also notice that he used to want me to sing when he was a baby .But now he hates it.He always puts his fingers on my lips telling me to be quiet.

And suddenly I realize its because he wants very much to sing and knows he cant
So I whisper-sing.

He LOVES it and strokes my face beaming with approval . I plan to whisper-sing all the time.

It really is too cruel to sing songs in front of a child who wants so much to sing but cannot

Wednesday

Same as Monday . He jumps into the bath takes one look at his foam letters and says "fonduh" (4)
I pick out two 4's and give them to him but he gestures urgently and shows me 4 fingers.
That means there is a third 4 in his bath letters and numbers which is missing. I go to hunt and sure enough I find it beneath the computer. How does he take one look and know ?
It’s so funny to see how ecstatic he is when I draw a face on a balloon and put a birthday hat on it .

He loves balloons and he loves birthday hats.

He quickly takes another party hat and says – "Hat UP" ( put this hat on top of your head ) – the boy sure uses the heck out of the few words he has

This has been a mostly frustrating week in terms of parent therapy.I am simply unable to do all the things I want to do and create more time.


For disappearing acts, it's hard to beat what happens to the eight hours supposedly left after eight of sleep and eight of work.


~Doug Larson

SO true !

I have never been content with time

Either it goes by too fast or too slow

Between his sensory routine, evening therapy, dinner and bath the hours have wings.

It seems only a few minutes ago I came home and now DH is taking R upstairs to do his bedtime routine.

I think I am also melancholy that this summer is over. Vacation finishes this week ( which is so odd since I am passionate beliver in year round school for many children with special needs)

New school will start at 7.45 instead of 11 am.

And the end of lazy mornings for my baby feels like the end of his precious babyhood.
Oh how I wish I could slow down time and enjoy my baby for a little longer each day!

Saturday, August 8, 2009

SOOC Saturday:Coping Better

Yesterday we are watching the recording of "Carly's voice" a show about a severely autistic child, seemingly in her own world who learns to communicate through typing.

When asked about why autistic persons stim , she answers "we create a lot of output.. so we can drown out the world which is providing too much input"

And there it is.

The reason for stimming- why some of the odd behaviors our kids indulge in, are really necessary coping mechanisms

Here is a picture of R when we were at an outlet mall at Gap.

Wisely realising that he was at the end of his patience, he retreats underneath a table cloth and stays there a while, as we browse

As he was neither bothering anyone, nor doing something harmful- we let him be

There are many books written about the chldren who get X Y Z treatment and in some years become completely indistingushable or those children who are so autistic but turn out savant like in some area.

But children like R, have stories that are quietly heroic in their own way.

Slowly, but intelligently, forging mechanisms to cope with a world that is sometimes too much.


For more fun with SOOC Saturday visit Melody at Slurping life. Her link is on my blog

Wednesday, August 5, 2009

Letting go of guilt

We are sitting in the conference room at work – and we are discussing a case study of a unsuccessful launch

We are doing a "post mortem" on why things did not work out and going through all the decisions that were made on the case.

Then we are looking at the choices made and then thinking about all the reasons why those decisions were the wrong one.

As we go over each decision – it occurs to me that all the decisions were the best choices at the time.

I say to my coworkers

"All these decisions seem like wrong ones just because we know the answer.. Things did not work out the way we expected. But if they had worked out the way we expected. We would be patting ourselves on the back and talking about all the reasons why these decisions were the right ones"

One of my colleagues nods his head and says "Sometimes things just don't work out the way they are meant to"


And there is a truth if I ever heard one

In the path to the day of finding out that your child has Autism and the years that follow after that, how deeply we examine all the choices we made on the road to Autism and the things we did post diagnosis to help our child.

Every new study that comes out resurfaces that guilt.

In the ASD mom community you will hear often things like. ( It's the same statements you hear over and over again)

"I really should have had them split out the MMR vaccine… what was I thinking? "

"What is the point of the Hep B at birth if the mother does not have Hep B?How I wish I had researched more"

"I really should have moved to a city with better services… I feel sick to my stomach whenever I hear about how much Early Intervention she would have got, had we lived in California"

"Its those darned ear infections .. why did I put him in daycare? .. after all the nanny horror stories , I never wanted to get a nanny , but see what happened instead "

"OMG I had no idea I was giving my kid mercury through my breast milk"

" I really need to do more with my child.. Look at what Catherine Maurice did"

"Should have started speech therapy earlier.. I feel nauseous now when I see how bad his Apraxia really is"

"Its those darned Baby Einstein DVD's… I am so ashamed now when I think of how I would press the replay button"

"I really should have done more( or less ) DAN/ABA/Floortime/RDI/ABA … maybe my son would be so much further along had he benefitted( not been harmed by) these"

This week I also read on Hopeful parents –a quote from Vicki Forman ( fabulous mom and fabulous writer )

"[A mother] believes that if she simply pays attention long and hard enough, she can prevent anything from happening."

And there it is

A fundamental belief that moms have

That is fundamentally wrong.

The reason why we feel so guilty

The truth is we are imperfect people (like everybody else) and we made the best decisions we could make at the time we made them.

These decisions feel like wrong decisions because the outcome was different than what was expected.

We don't know that the outcome would be any different if we could go back in time and make a different choice

A second truth is that we never give ourselves credit for all the right choices (and if we look back honestly there are plenty of those) we made.

It's as though the only thing worth focusing on are the things that we did that some research study says caused/did not prevent Autism ( and then another research study quickly repudiates )

And the final truth is that we have no reason to feel guilty

It's a lesson that I learn and relearn all the time



 

 

Floortime Lite Mama

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