Saturday, February 27, 2010

SOOC Saturday : The road I traveled

As we complete three years of Autism my mind goes back to those early days.

When R turned 18 months with no words and we were starting to get worried – I read a lot about “speech delays”.

In the Fall of 2006 I read all the advise carefully of saying the same word over and over again

So while taking walks with R in my baby bjorn in the evenings
( for I could not bear to be away from him in the evening after having been at work all day ) I would repeat “Mailbox”. “ Leaf” “Road”” Stop Sign

Careful to say the same word with the same object so as to not cause any confusion

I would point to a pebble and say s “what’s this ?”

But even though I repeated this every evening – R never answered

Then winter of 2006 fell all upon us – the cold , along with the time change, meant that we could no longer take our walks

And so I got out of the habit

A whole season later in the spring of 2007 – fresh from the wound of the diagnosis – I and R resumed our walks

That first day as though by habit – I resumed my practice of asking “what’s this ?”

Silence !

An entire season had gone by and not brought a single word

Tears filled my eyes as I realized that R would never speak

A few weeks later – when I got home from work – DH greeted me excitedly

he knows all the names of the Little Einstein characters “ he said gesturing to the print out of the Little Einsteins ( which was to become his first PECS ) “I asked him who is Annie……. and he took my finger and put it in Annie .. then I asked him about June .. he knew them all

With a sudden rush of joy I realized that not being able to say the words did not mean that R had no thoughts

All that wishing and hoping!

And the answer had been right in front of me !

(Often now when I ask Life a question – I wonder if the answer is staring at me and I am just unable to see. For answers can come in forms that we do not expect. Sometimes  blinded by all the noise and sometimes  just not ready)

That evening on our walk I put my hand in his and asked “Touch Mailbox”

He took my finger and put it on the mailbox.

I tried it out with the other words I had repeated over and over again the past few seasons

He knew each word !

And we learned how communicating and connecting has so many different ways

This Fall when he started to have some words I took this picture of him after he pointed to the Stop sign and said “Sop Sigh”( "Stop Sign")

Yesterday when DH asked him what he wanted for lunch he answered casually

Pizza .. at Mall

Just like that

Oh the roads we have traveled

Oh how far we have come!

"What lies behind us and what lies ahead of us are tiny matters compared to what lives within us."
---- Ralph Waldo Emerson

PS Up Early today as R decided to be quixotic and wake up early on the weekend ...so Melody has not even posted on her site and  already have an SOOC post !!!

Friday, February 19, 2010

Week of Feb 15


Saturday and Sunday

We spend the weekend in Gatlinburg – I book a little cottage.

And of course, AFTER having booked and paid 100%- I decide to look at the reviews on trip-advisor

The people who have stayed in this cottage are completely of different opinions.

One claims that this is the best place they have ever stayed in.

Another claims its musty and moldy.He expresses shock that there are not mushrooms growing beneath the bed . He further adds, that the manager yelled at him and frightened his 71 year old mother !

As the time for us to check-in draws closer –I am leaning more and more towards the second person's review and have convinced myself that the first review was a fake one written by the owners of the cottage.

Filled with pre-emptive dread, I am fully convinced that we will be spend the night on a bed of mold and shall be yelled at by the diabolical manager, if we dare to complaint.

The cottage turns out to be one of the cutest prettiest places we have ever stayed in –large, shiny, new and cheerful and the manager the next morning is a genial man oozing Southern charm and does not yell at all!!!

Gatlinburg is gorgeous – especially when there are not too many people around!

It snows gently. DH, I and R sit in companionable silence.

I feel I am in a Snow globe. I have a simply lovely time imagining myself as an elf  (wearing a red and white pinafore) with an elf family living in a little house in the hollow of a tree with a lantern in the window

There are mountain people and there are beach people.

I think we are mountain people, even though both R and I tend to get car sick in the mountains

The ice is as treacherous as its beautiful.

At one point, our 4WD has its wheels turning precariously. DH tells me and R to get off and stand far away .
He looks tense and I am quite frightened because its takes a lot to get DH nervous.

Once we are all safely on clear roads – DH claims that he was not nervous  and simply did not want me and R to "feel a thud" and was "not at all in fear of our lives".

We are looking at cabins in case we end up buying one.

The cabins on the market are lovely.

But some have sad stories of the way we are talking over the natural beauty of the Smokies – for some builders have taken a mountain over and just build many many cabins without any desire to try and fit in with the surrounding.

 These cabins look like boils on the mountain.

There is a sign on a gorgeous mountain – which says "Approved for 400 units" and this makes me shudder!!!

DH and I have classified the cabins into the following
  • Pimples ( many cabins on one mountain),
  • A-shaped ( the swiss Chalet Style )
  • Veiled Bride ( the one that have a large upside down U shaped roof ),
  • Babbling Brooks ( ones on the side of a noisy stream- we love these )
  • Scenic Views ( nice view of mountain – don't have to see too many people)
  • Fakey – Mc Fake ( where the builder has added a lot of pretentious olde-time touches like a water wheel, a cart etc )
Another thing that makes me sad is the story of foreclosures that some of these cabins tell

One cabin -that DH loves because it has its own pond and a horse riding farm next to it – has an eviction notice on it and an abandoned Barbie trike in the backyard.

Tears fill my eyes when I imagine the little girl whose home this may have been.

DH looks at my teary eyes and hastily says that this must have been an extra investment home (this I notice is not unlike the doggie-heaven story that people give their kids when their pets have died) .

But I am inconsolable and say we could never live here.

Resignedly he moves on!

Monday

We play a bit .

Owing the Vitamin M, R falls asleep really fast.

(He bursts into tears in the bathtub – he is that sleepy )

This leaves me and DH free to watch Northanger Abbey – this is a lot of fun.

People do not change much over the time

These people in their gowns in the 19th century desperately are looking for the right match – the woman with a good annual income, the man with the connections are just like many people today !

( except, of course, for the hero and heroine who are only interested in true love )

Our single friends, 200 years later than Jane Austen's characters , claim to be "commitment phobes".

However, we always tease them that its not the phobia of commitment but the feeling that there may be better fish in the sea – that causes their reluctance towards nuptials


Tuesday

Our School speechie came in and did our Hanen Training .

She suggests an interesting thing to encourage speech - instead of pointing out interesting things in the environment - we should try to notice what R is looking at and then describe it

This is subtle but powerful

So for instance if he is looking at the frig - we could say "The frig?.. the frig keeps things cold"

I ask about Pretend play and she gives us some suggestions that we are already doing

1. act out with the toys things that are already part of his routine
2. act out scenes from what he watches with the toys

I think DH is her star student ( as he should be -he really is amazing at playing with R and has a very calm air about him)

Surprisingly R is starting to show some joint attention

When DH is playing "airplane" with R –a song is going on on you –tube "there was a lady "

R is loving the game with DH but he is also interested in the song and we notice he is laughing and constantly looking at Dh and the speechie video-recording – to share in the joy

This is brilliant

R 's acquiring words everyday-Its stilted and immature but its correct .

He sees me with a towel wrapped turban-style around my wet hair

He says "come here "

I coo and ask  "Mama come here ?"

He touches my hair and says "Com hair" ( comb hair )

Thursday

DH and I have a nice lunch at Chili's

I plan carefully ( as I am now on Weightwatchers . must get weighed tomorrow and I really don't want to do the walk of shame ) and order a Chicken Green Chile soup

Its low in calories and also low in satisfaction

I absentmindedly down some of DH's fries and stop in a panic

When I come home .. the sun is shining and we go outside and jump

We left a toy tea-cup in the trampoline many days ago and R runs to it and we sing "I am a little tea pot"

R wants to do the WiiFit but we are only able to get halfway before his therapist gets there. We are unable to do "Soccer heading "- one of his faves

I do bedtime tonight – R takes a long time to sleep as I did not give him melatonin today

I am thinking over my day as I usually do before I go to sleep  – gloating over the joyful bits and mourning over the sad bits

When suddenly I hear a small voice say  "Soccer Heading " ( this is the game we were interrupted in )

Then I hear the same small voice croon in a tune "Soooooowy day" ( "snowy day"- this is the song he was listening to on You tube )

Suddenly with a rush of happiness – I realize that R is doing exactly what I am doing – going over his day in his head !

My little boy!

Just like me!

Tuesday, February 16, 2010

Autism : Its been three years

Three years ago today in a bleak office - we learned that R had Autism

The doctor was stupid and insensitive.

He was telling us about Autism while telling R not to play with the blinds

We were shocked

Like I mentioned, his office was bleak

He had a large painting of a child wandering a black & white people-less world- all  alone .

I suppose the artist was trying to show how lonely an autistic child is

He handed us a book to read over the weekend ( for it was Friday evening and I suppose he was in a rush to get on with his weekend  )

 Full of outdated statistics (  like 73% of Autistic children have cognitive damage )  and full of dire prognostications,   "The world of the Autistic child " is probably one of the worst books for a parent to start learning about Autism

That weekend we felt like we had come undone

In the days that followed, our thoughts were dark and bleak

We kept expecting R to get worse and worse!

 One phrase from the book would run on "repeat" in my mind -

 "As the disorder unfolds....."

Would he become a child that would disengage from us and rock in a corner ?

But about a few months into the journey we finally mustered up the courage to ask our Early Intervention Co-ordinator

"How much worse will it get?"

Her answer was such a relief

" You have already been through the worst " she said " he will keep getting better and better now "

That was our turning point

I had so many questions then. Such fear

So much has changed

From an obsession - Autism has become an implicit part of our life .

Sometimes I think back over my life

There was once a time when I did not know what Autism was.

It seems impossible -

Like another life -belonging to another person.

And in many ways that is true

Three years ago today,  I spend all night crying .

How different tonight is-  I think while putting R to bed - with his arms around my neck !

His last words before drifting off  were a sleepy happy coo of  "Mother .. Mother ..." whispered against my neck.

Bliss . Peace. Contentment

Rather than crush me- as I thought it would

Its like the kaliedoscope of my vision has been shaken by the hand of fate.

My perspective has shifted

But life is in sharper brighter color

And I am loving what I see.

Saturday, February 13, 2010

SOOC Saturday : Three magic words

In my sisterhood

The sisterhood of mothers whose children cannot speak well or at all.

We say this often

"When will I hear those magic words ....

I love you ....mommy"

Not me

I have my share of longings

But, those words are something, I have never yearned  for

While R may not say those  words

I hear them everyday

For more fun with SOOC Saturday, please visit Melody

Wednesday, February 10, 2010

The week of Feb 8th

Saturday and Sunday

Dreary weather and overscheduled and busy

Really little accomplished in terms of playing

We were out and about in the Smokies on Sunday and had a really nice time.

Not in the mountains but  in the McDonalds there- LOL

R is a little carsick and we are all  very tired  though it was also Superbowl Sunday - the roads were all empty

Mcdonalds with its -what-you-expect-is-what-you-get food was such a welcome relief.

Plus real Coca Cola ( not the diet stuff ) always makes me feel better

When I am stressed or tired - I love sameness

Little wonder that Auties love schedule and ritual ( as ordinary life must feel pretty stressful )

Not just the food and the open space, but there was a left over Sunday newspaper -

I jumped on the jumble word and DH pounced on a crazy Soduku which had 5 sections

 R ate 8 nuggets and we were all happy

I am usually very good with jumbles but this one eluded me and is still nagging me - TORROA

Monday

I had a work lunch at a Mexican restaurant where while I ate only half of the Chicken Quesadilla - it was an ode to Cheese ( and fat ) and has gone straight to hips

Thankfully Weightwatchers is starting on Friday and hopefully I will get some of this blubber off

I had gone to work REALLY early so I came home ON TIME

Woo hoo

I was chatting with DH downstairs when R hears my voice and came running down the stairs - I squeal with joy and twirl him around and around till we are both were dizzy

I tell him I am simply mad for him and in return he holds my face and kisses my cheeks and forehead in that enchanting way of his

Really he is a dream come true

R and I play for almost 1.5 hours before his therapist came - we jumped on the trampoline and played with the dollhouse  in the playroom

R makes the father doll stroke the mother dolls hair and he puts their son on the potty.
 
As always,  he throws the baby away and I am glad we are not planning to have any more children - as R's feelings in this subject have always been perfectly clear

We are having trouble going to sleep again and I think it may be time to try Vitamin M !

Tuesday

 I talk today with a mum for over an hour - she is a friend of a friend and has got a diagnosis of ASD for her child and I get a lot of satisfaction in helping her find out resources and give her some advice regarding her son

I have got myself back in the mode of playing with R in the evening rather than all of us vegetating in front of our screens - interrupting - just for kisses and cuddles

Now, I think its time to move our interaction to the second portion of floortime which is not just following the child'd lead but challenging them to build greater circles of communication

Something that Stanley Greesnspan says in one of his podcasts is that

“if when you are doing Floortime with your child and you can predict the response that your child is going to make then you are not really doing Floortime…..if you can predict it then you are basically doing rote patterns of play not really Floortime… and the child is basically responding from a memory pattern....  not really creating a new interaction ”

which is the case when we are doing tickle /babysandwich games etc

So here is my challenge to myself for today evening - not just create the time and space for joyful interaction  ....but also challenge him to build more and more circles of interaction

In the evening

This was interesting - we did do about an hour of Floortime - we went to the playroom and played - did little bits of pretend play and I followed his lead and tried to deepen the plot.

 Example,  when he would pick up the plastic ice cream cone - I would use a finger puppet to beg for some icecream so R would feed me.

If he would play with the teapot - I would become Elmo and use the Elmo doll to ask for a cup of tea

 The only problem was that his attention would keep wandering to the next shiny object
From the bowling pins to Thomas the train to any new book ...............his interest would wander to the next shiny object

How should we lengthen the engagement with one activity ?

I really think some  of it may be to actually redirect his attention back to what we were playing with and I will try this today

The ADD aspect of Autism is interesting .

It is my belief, that many  Auties appear to have a deficit in attention - it actually does not-  for R stem from a true deficit in ability to pay attention

But rather that he pays attention to the things he wants to pay attention to( like the computer )  - not the things that we want him to pay attention to

He was also sleepy and tired in the evening ( he has not been sleeping well at all ) and I finally broke down and gave him a 1/3rd dose of Vitamin M ( melatonin)

He was out like a light at 8.10pm

Wednesday

R slept through the night and and woke up almost 9.5 hours later.

As he went to bed early - DH and I were thrilled to get some TV to watch by ourselves

As though to thwart our pleassure in the evening - House MD and The Big Bang theory - our faves were unusually boring

I had a couple of meetings cancelled in the morning and asked DH if I could come with him to the Hanen program

The training however only lasted for less than an hour!

A few flurries of snow are enough to put the city in a state of panic and the school was sending kids home early

Really liked what I saw though .. some examples of how to modify your routine to enhance language

Frequently the trainer says - auties dont really understand words-  but simply use contextual cues to understand what is happening

For example, they may not know the word "bed time " but are aware of what we do each evening .
So, when you say bed-time - along with all the activities around bed time - they guess that bedtime is happening though they do not know the meaning of the word

The solution is to - take some routines that we do everyday - use simpler and the same language each time
example
  1. bath
  2. fill bathtub
  3. get inside
  4.  soap
  5. finish bath
  6. empty bath tub
  7. Put letters, numbers in basket
  8. Lotion
  9. Shirt
  10. Pant


Another thing we learned was how to get more complicated and abstract concepts across in regular language

Like when we offer  snacks to R

We could ask "which snack do you want"? and offer choices while labeling them hold our one chip and say - chips?- and remove it and hold out a pretzel and say pretzel ?

After getting the answer teach the words few and many - by asking "Do you want few chips or many chips?"( also giving a clue with a hand gesture )

If he says many reply "you must be hungry?"

Hmmmmm..... very interesting and I am excited to try all these ideas out.

I must say being an Autie mum is increasing my own intelligence !

Saturday, February 6, 2010

SOOC Saturday - Its all about love


The bride and I used to be roommates in Grad School.

We became really good friends through our mutual distaste for our messy third roommate and our common passion for Clorox wipes!

She dated Indian men ( like good Indian girls are supposed to )

But never found someone she could really connect with.

When she finally found her soulmate - he was not of her culture,  nor of her religion - there was nothing in common in their backgrounds

But  I get the  feeling that  this marrage is one for keeps.

Because its not about our differences

Its all about love

For more fun with Straight out of Camera Saturday - join Melody at Slurping life




Friday, February 5, 2010

The week of Feb 1

Saturday and Sunday

Are snowy

In spite of much persuasion and pleading - R will not come out of the house -The snow is crunchy and not soft and fluffy which is what he likes

He sobs "coputer" "coputer"( computer) and I finally give up.

He tries to get me to take off my jacket and hat.

I do not- as I want to go for a walk .He does not appear to notice my leaving but  I sense he is suspicious that I am leaving the house( without him ) .

The walk is really lovely - I am the only person outside- there are no cars - no people .


Many people use fireplaces here in Tennesee and so the chimneys are puffing smoke gently

I have been watching Emma By Jane Austen on PBS (  my least favorite heroine-because of her snobbery and manipulative ways and the dreadful advice she has been giving to Harriet Smith - who really would not have refused the farmer's proposal had it not been for Emma and her meddling ways  ).

I imagine I am in 1815 ( Emma's time ) .

I look around the snowy neighborhood and imagine it is the cosy village of Highbury. Inside these houses are ladies in gowns gossiping gently over tea and crumpets.

I can see them in my head.

I have a delightful time imagining  the clothes of the lady in the house I am just crossing ( the lady inside is lovely 80 year old woman who paints her nails bright red and talks volubly  about her late husband and his many virtues and her present children and their many flaws- but I find I can easily picture her as a matriarch - a benovelent tyrant in a hat with a long feather )

My reverie is broken when my cellphone trills and I have to time travel 200 years back into the present!

My suspicions ( about R being worried that I had left the house without him ) are well founded .

DH asks me how much longer will I take as R is sitting by the window wailing "Mother Mother"

I resignedly say that I will walk back but DH calls a few minutes later to tell me that the apparently inconsolable and distraught R has given up crying and is squealing with joy over you- tube !!

Such are the hearts of small children.

 And I am free to ramble along the gentle hills of my neighborhood for some more time

 I have to postpone our team meeting( our therapists and ABA implementor meet every couple of months )  becasue really there is no way of driving on this snow

On Sunday afternoon we are finally able to meet and its all icy and gross- but safe.

DH and I make red velvet cupcakes - he is a true artist and while I would just have glopped on the cream cheese icing - he arranges it with graceful swooshes and puts candied pecans on top of them

R's therapists are all thrilled with the progress he is making but they are also starting to realise what I and DH have been thinking about for the past few months- that we have more to worry about than just the apraxia

We remind everybody that just 6 months  ago he had barely any words and we did not know if he would ever talk - and now we are grumbling about sentence comprehension

They cheer up rapidly

R strolls in majestically.

We all demands hugs and so and goes from chair to chair being fawned upon and kissed- and in general being King Tut

Monday

Is a terribly tiring day - I have a 12 hour work day and I come home spent and worn out

I realise that R's pizza is finished - as he is Gluten free - we need to make everything from scratch ( including even the pizza sauce as I have forgotten to put it on the shopping list  - DH can tell from my face that I am in the last-straw-mode and he helps me a lot)

When I open the dishwasher and find that he has already emptied it - my mood changes and I feel loved and happy again

Tuesday

Is cold but sunny - I am able to come home from work on time  and even stop at the eyebrow place so I can return my eyebrows to their state of glory.

Currently I could peel them off and lend them to Burt Reynolds for use as a moustache

My heart sinks when I see that the threading lady in the shop  is the muscular butcher.

I worry too much about hurting her feelings and resign myself to pain

However the very large and very pretty  woman she is currently working on has no such compunctions and tells her what a terrble threader she is -loudly and angrily.

I soothe the hurt feelings of the butcher when its my turn ( though tears spring in my eyes at the pain)  as she works on my eyebrows with her usual brutality.

Still my eyebrows are gorgeous and its all worth it

I and R jump on the trampoline and using the techniques of Wait and Slow we have quite a game going

He tells me to jump high and jump low and is thrilled by my obedience and we spend much time collapsing with squeals and giggle

Wednesday

We play word games in the bath tub.

I try to start a game of rhymes and write ROW LOW

He will have nothing to do with rhymes as his current passion is opposites and so he changes it to HIGH LOW


Thursday

I am itching to clean the playroom and spend some time doing that ( and scold myself severely for not doing floortime - but what is a woman to do?)

I see what he is watching on You tube - which is a song titled - do you know the number of your house?

We  hunt out the number of our house and then play with bubbles in the bath till bed time

It amuses me to see the paraphrenelia that R collects to take  to bed - the number 8, a Little Einstein Book( the adventures of Melody the Music Pet )  and a picture of the Solar System

I know he has a disability

I know this in my head.

But in my heart his uniqueness and his special ways  makes me feel like I have the best-  most fun child in the world blessed with so many gifts

Wednesday, February 3, 2010

Learning to talk

"What do you want to do ?"

R's grandma is asking him some weeks ago . She is starting to get a litte frustrated as R does not anwer her .

After asking him a couple of times, she turns to me  " he has the words .. why doesnt he answer?"

I answer " Becasue he does not understand the question?"

Its the truth.

When R answers questions - he is using memory of the context rather than pure comprehension of a sentence.

In reality, he mostly understands single words

For example,  this evening when I asked him

"Do you want to jump on the trampoline or play in the playroom?"

 Since its evening and I have my sneakers on he will use his memory of what we usually do in that situation - and his understanding of the two words "Jump" and  "Playroom"  that makes him answer -

"Jump"


As R's Apraxia is loosening its grip and we are getting more and more words -we are recognising the  challenges of the next stage of language.

Comprehension of sentences.

I toss and turn over this quite a  bit

It can feel disheartening

The feeling that each time we climb a mountain there is another new one just ahead

At the same time,  when I look behind - I see all the mountains- seemingly insurmountable ones- that we have already climbed


And it gives me courage 

I keep my eyes steady on what I dream of

Of talking to R ....Really talking

"Ah but a man's reach should exceed his grasp, or what's a heaven for "
                                                                 - Robert Browning

Floortime Lite Mama

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