Saturday, June 26, 2010

SOOC Straight our of camera: The end of an era

 Mothers  make books about Firsts…..we write down the date of the first tooth , the first steps

But sometimes it seems to me that motherhood should be measured in lasts

One last happened a few days ago

Last Saturday was the first day of R’s big boy bed and the last day of the family bed

A big fuss has been made in the week preceding the transition

And we have been telling him repeatedly how proud we are of him turning into a big boy

It has been hard for R

The first morning when I come to him .. he turns away from me and says

“See you later mama… good bye”

For he is a child with a lot of self respect.

If we don’t want him … he does not want us either

DH and I curled around him.... all of us cramped in his small bed

We explain to him that this was just as hard for us as it was for him ( it is .. I am in tears while writing this)

But necessary .

That we love him more than he could ever imagine but that its our job as parents to make sure he is independent

We explain to him about roots and wings and how as parents we must make sure we give him both

R senses our sincerity ,puts his arms around the both of us and we all three lie close- mom and dad on the puny shoulders of a 5 year old child – all three of us knowing that this is the end of an era

I say the poet Khalil Gibran’s words to myself like a talisman to remind myself that this is right and good and what we must do

Your children are not your children.
They are the sons and daughters of Life's longing for itself.
They come through you but not from you,
And though they are with you, yet they belong not to you.
You are the bows from which your children as living arrows are sent forth.
The archer sees the mark upon the path of the infinite, and He bends you with His might that His arrows may go swift and far.
Let your bending in the archer's hand be for gladness;
For even as he loves the arrow that flies, so He loves also the bow that is stable.

I take his picture with my phone  when he mollified starts to look at the DVD he will watch that morning



And come to a stunning realization

All this while, I have asked myself the Special needs mom question “How will he live without me “?

But there is another question -the reciprocal which all parents must face when their children become independant

The selfish human  painful question

How will I live without you?”

For more SOOC connections  with other fabulous bloogers visit Melody at  her wonderful website Slurping Life

Tuesday, June 22, 2010

W/OJune 19th: of Fathers days, of swimming and summer

Saturday

Suffice it to say, a large portion of it was spend in the pool !

This is a very long and messy process as we have a bath every time he gets out of the pool ( pool + bath + lotion =2 hour process )

 But I love it

Swimming pool, like the bath tub and the trampoline is the ultimate therapy room

 So we press down the little floating thing that we call “Melody the swimming pet “ ( from the little Einstein song ) and release it with a start and sing

 This simple game is sensory therapy ( heavy work ) + Pretend play+ back and forth engagement + speech + teaching about what buoyancy is ( he he he .. he knows the principle now as we tested it with all his foam letters )

Plus we have loads of fun ( loads of fun that are not in front of a shining screen ) !!!


Screen time rears its head as a worry from time to time - especially in the holidays

We are doing up R’s room as he is to sleep separately this weekend and this is a lot of fun

The theme is fire trucks and vehicles !

I will share pictures when its done

Sunday

Is Father’s day

I have made a card with R – I don’t think he understood the concept but wrote obligingly enough “R loves Papa”

I have tossed and turned and wondered a lot as to what I should get for DH and I cannot decide and he is no help

He keeps telling me how he wants nothing ( but I know if I do not get anything he will have a permanent upper hand as the better spouse – as my mother’s day was a lovely combination of chiffon dress and pancakes. We are always playing the game of better-spouse-who-loves-more upmanship. Its a nice game and has all the recipe needed for a happy marriage- loads of love+ a little guilt-creating + a hint of familiarity to tie it all together )

We do go to Famous Dave so he can have ribs – and pulled pork. Basically every possible form of pig

We have a lovely time and are sluggish all afternoon - like pythons ( for those of you who are unfamiliar in the ways of the python – when they eat a biggish meal like a big hare or something – they just lie around unable to move . DH and I are very familiar with pythons as we met many pythons when we lived in a forest while getting our first Masters degrees. This is where we met each other - as well as pythons )

Finally I am forced to give him cash – I know how horribly avuncular and unromantic it is

(Regrettably – I am not even able to manage the surprise element ! DH manages all our money and I simply ask him for cash when I need it. Net net,  I have forgotten our ATM Number and have to ask him for the money to give him !!! oh well !! he knows I love him )

He really is impossible to buy for as I get him some shirts from Belk on an amazing deal from R.
He is unable to hide his dismay when he see the shirts and  asks me later if my feelings will be hurt when he returns them, as they are the

a. Wrong colors

b. Wrong Size

I call my Dad in India who is truly a fantastic father too

Monday

Is a strange day at work as I have no meetings and get a lot of work done .

 This is a rare occurence and a very good thing too as I shall spend half the week out of town in Utah of all places !!

 Have never been but Utah and Montana ( owing to me and DH being crazy for the movie and book " A river runs through it" ) are prominent on our list of places to go to!

I remember when we were applying for Grad School,  DH had a fullscholarship for an MBA at a college in University of Utah -

If he had gone there,  we would have spend our life in a completely different part of the country - lived in a different parallel universe

It always seems so portentous the decisions we make on location based on job or school !

You literally step into a parallel universe of people - people you would never have known otherwise

My growing years we moved from place to place. My  Dad;s job was transferable so I knew ( and enjoyed ) this strange phenomenon while growing up

I was discussing this with one of my friends who said that he, on the other hand,  envies those who stayed in the same place all their lives. He feels, they know all the specialties and secrets of the place.

This secret  knowledge .. earned and owned only due to a long term relationship with the place....this sense of belonging , is  the thing most worth having

I see what he means.

But I prefer my persepective!

( of course,  that perspective is mine owing to the life I have had.

I would not have that perspective had I  lived a different life.

Perhaps a K is living in a parallel universe, a K  who cannot imagine living in a different place than the one she was born in  )

We have stayed the longest ever in this Small Southern town that we deeply love - 8 years this month

However, home for me really is wherever  DH, R and I live. That is enough for me,  to feel like I belong  wherever we go

And sometimes a  voice whispers in my head - What  parallel universe is  out there ?.. People, friends, homes, streets, restaurants, expereinces  ... just waitng for us to come visit and become part of our story"

So many gorgeous places to choose from

 I have had a yearning for Colorado for some time. Sometimes I think of California ( small town though - Delhi has permanently turned us off big cities )

 I wonder if in a few more years it will be time for our little spaceship with its three travelers to take off

When I go home in the evening R has had his sessions today and is sparkling - he loves his therapists !

We are just so blessed in the people we have in his life - thank you god for these wonderful people

DH and I go to Lowe's to pick up wood for the tree house we( as in he )  are making for R - DH wants to make sure I like the colors -

 I want the following things
  1. a biggish slide ( by big  I mean wide enough to fit my rear )
  2. a Periscope/telescope type thing  ( I dont know why but I know this is essential to a child )
  3. one of those disc swings
  4. a climbing wall
  5. Maybe a trapeze
 Our back yard has slowly turned into sensory playground.

One of the best advice we got from a Floortime psychologist was to "forget everything else - just fill his day with swim sing and swing "

We have added playing, jumping and sliding and find this is ultimately therapeutic

R is making a big fuss over dinner these days pretending to gag  gagging over his veggies

( I am most particular about veggies though as its easy to give in and be a junk food eater especially in the gluten free world )  -

His Gran is around during dinner  and he knows she is a softie and will always take his side - which is the reason for all the gagging!

( its strange .. she is a very strong women- and strikes fear  where she lives and kicks butt of all - from servants to govt officials- but she is a softie with R who wraps her around his finger with the skill all adored grandkids have  )

He acts full and sick and keeps telling me

"all done"

But I persist through 3/4th of dinner - counting down the bites

As soon as dinner is away - the   feebleness and sickness disappear - he is able to muster up the strength to ask for chips and lustily eats his way through a whole heap !!!

Such master manipulators are small children !

I speak to my parents on Skype and we spend a lot of our time asking each other whether they can hear us , see us or not

My cousin sister is getting married and their social lives are all agog with the excitement and its all about who is coming , and what is to be worn

My sister is coming to purulia too  for the wedding and I miss her dreadfully!!!

She will show me all the clothes on Skype and I am looking forward quite ridiculously to this

In India, weddings are HUGE - I had a small wedding ....with only 300 people... LOL

I love these summer days

This sense of generous time

I love school being out

How is summer for you ?

Summer ( RL Stevenson )

Meantime his golden face around
He bares to all the garden ground,
And sheds a warm and glittering look
Among the ivy's inmost nook.

Above the hills, along the blue,
Round the bright air with footing true,
To please the child, to paint the rose,
The gardener of the World, he goes.

Saturday, June 19, 2010

SPD Blog Carnival Celebrating Fathers

They say the second time you fall in love with your husband is when you see how much he loves your child

But for a lucky few in my sisterhood of special needs mums  there is a third time ..

The time when you find out your child is on a different developmental trajectory than you thought he was on

And your husband still adores  him just the same

Never once talks about ( or even thinks about ) the football, the cricket  , the boarding school etc that he was "meant" to go to .

Is still cheerfully teaching him how to throw a ball ( for R simply cannot do that yet ) ; shaking his head ruefully saying " isn't it strange how he can add and subtract but not throw a ball "


Anybody can become a Dad,

But it takes a real man to be a great  Special needs Dad

I am glad that man is mine

Happy Father's day to a fantastic  father

I hope all  the wonderful fathers I know including my father,  the man I married, the Mr Daddy's of this world and the other  wonderful special needs Dads I know- had a lovely Father's day this week

Hartley is celebrating Fathers this month in her blog

To visit Hartley at her blog carnival and meet other families that talk about their lives go here at Hartley's boys

Thursday, June 17, 2010

Doctor Dan visit and Other therapies ( Week of June 14)



Prologue  


Thank you for those wrote. 


Always love your comments 


A couple of comments expressed concern on DAN. 


Appreciate your concern very much 

So  wanted to add a little about our DAN journey


Also wanted to add a disclaimer as our choosing biomedical methods is  not a ringing endorsement of the methods in general.


It all depends on what your child needs, what you can afford ( in terms of time and money ) and of course always being safe  finding someone good and ethical 


The magic  words in Autism are  


Custom. Approach


When we started on our Autism journey, we ignored the biomedical aspects , 


Then a couple of years back we did a urine test "just to rule things out" and found that R had very high levels of mercury 


We also found through food allergy testing that R had a gluten allergy 


We looked for a doctor who treated these types of issues  - we found a good one - he is a regular pediatrician who takes regular insurance and has a regular practice

However his daughter has autism and so he set out to learn about DAN 


I assure you were are very level headed and have made sure that we "first do no harm"


Plus he is a very good doctor and he is frequently telling us about all the quackery that we must avoid


Another thing is we are not trying to "cure"  autism  or that the things we do means   that we don't accept him fully 


I think you all know that how much we adore him


Frankly we do not even see R through the Autism lens at all 


It is simply about meeting his needs - be they an allergy to wheat or apraxia 


DAN treatments get a very bad name in the ASD community ( frequently deservedly for charlatans and quacks abound  ) 


But we have kept a very open mind in looking at options for R - neither swayed by miraculous cures nor throwing out the baby with the bathwater  at stories about the DAN Quacks 



Doctor Visit 

Saturday is the long trip to Nashville to see our DAN doctor

R is always very stimmy in these appointments -

I realized on our drive to Nashville  out that this was because he was afraid of a blood draw

So I tell  him in the car several times that there will only be "talk and no hurts" this trip

This has a marvelous impact on R 's mood - and he gives the doctor a hug when he sees him - he is also calm and plays with a plane and a car ( "Very appropriately") in the doctor's office

The doctor is delighted

However he is also very gracious and says that we are doing so many things for R that it is very hard to say what is working

This is one of the many reasons I love this doctor !

There are many charlatans who do DAN - not this doctor

MIL asks us anxiously on the phone as to what the doctor said and touches every wood when I tell her what the doctor said ( that he is doing very well )

I dont necessarily share her elation though

DH and I simply do not use other people any more to tell us about R.

 Its extremely valuable input - but certainly not the verdict.

On our Autism journey -where no one really knows what the cause is  , nor  why there is an  epidemic , nor  what the cure is ...  we deal with a lot of ambiguity !

We now  see specialists as people who give us directions on our way -

Someone unscrupulous may deliberately mislay you .. another may have the best intentions but not the knowledge of the way ...

If you are lucky you find someone who has knowledge and good intentions.

But even when you are lucky ( as we are ) and work with a lot of people who are good  AND know thier stuff ..  no one really knows the way in any definitive sense

We find we  must be able to judge who seek  advise from .. be able to recognise a wrong road and be willing to course correct .

For instance, we  know that R's mood in testing situations is a big predictor  as to how well he tests

I always remember back to the early days when within a week two specialists hinted at future genius and doubts on cognitive ability

In this case simply not having the anxiety of a blood draw meant that he "tested well"  and was described as  "developmentally  exploding"

Everybody talks about autism being a spectrum

But parents of autistic children often notice that our children move up and down the spectrum in the same day !!!

Our  doctor wants to do more testing on heavy metals and this always makes me uncomfortable -

Becasue I fear it will lead to a recommendation on chelation

I do not know why I fear chelation - I only know that I do

DH and I confer quickly and decide to at least do another baseline test to see what heavy metals he still has - his first test results showed mercury and last year showed some ( not too high ) lead

On our car ride back I tell DH that I want to be done with DAN

I cannot believe I am saying this !

I am always the person in favor of action - of doing things .. of not missing something that R needs

DH  replies " we can be done if you want to "

But I dont know if we are ready to be done either  ..  dont know  if we feel we have done enough

Eventually we decide that we will continue for another 8 months or so for usually the DAN protocol is a 3 year protocol ( and also depending upon what the next set of heavy metals and labs show )

We stop at Cracker Barrel at Lebanon

Oh how I adore their Pecan Pancakes !!Another reason I love Cracker Barrel is because its one of the few places I can feed my Bit of Honey Addiction

I am back to being a great big Fatty and must exercise more restraint and also exercise

We smuggle in the important Mc Nuggets for R

R plays in the playground at the Mall and hides beneath tables in the shops - ...its so cute when he peeks out of the curtain


One of the delights of being mum to R is that even at 5,  there is such a sweet babiness to him

Other therapies 

This week it seems all our therapists are for one reason or another unable to come for therapy for R- car trouble, illness etc

I feel like I must in fact compensate for this - this state of fewer hours of help that he is getting from the outside

However he suddenly seems really relaxed and happy under this benign neglect.

Mad for the swimming pool that DH has put up

Playing with his letters in the bathtub making longer and longer sentences

Here he has written "The Talking words factory" - one of his Fave movies .. sorry the T is missing


It again reminds me that holidays are important too

Easy to forget that

My insidious mommy guilt is ever alive and reminding me that I dont do enough

But as I keep saying at work .. let the data guide you .. and so I am teaching myself to be okay with this time of just being

We made a decent therapy schedule for the summer .. it seems to really be falling apart from time to time

And its somehow still okay

Saturday, June 12, 2010

SOOC Saturday : The eyes of wonder

Move out of the way “ says another friend of mine with exasperation “ why do you always stand in the way

She is speaking to her grown up daughter who is cognitive challenges

"I used to get together with my friends in the Autism Society .. we would get together and vent about our lives"a fellow mum will say .. in front of her child


"He took forever to toilet train" a father will disclose .. 

again in front of their child


( to be clear .. its not the venting.. or the sharing .. that I mind ... its the in-front-of-the-child aspect that bothers me )

When I sometimes see the mums of other special needs kiddos -- especially  grown up kiddos – my heart skips a beat

Even when there is love --- a lot of love

There is also the under current of  irritation

A sense that the child-adult is slowing everybody else down

A treating of that child/ child-adult as though they would not feel patronised or condescended to when this was being done .. would somehow not mind

Even though R has many special needs, I have never felt this way about R

It seems that he and I and DH have a magic world all our own and we see our life and our son with enchanted eyes

Often we share a secret smile at something clever and adorable that R did

Wrapped up in a bubble are we

Two parentheses around this child

R between us coccooned in our love



I doubt R has any idea that he is any different – if anything - he probably takes it for granted that he is the best

Indeed we tell him everyday that we are the happiest parents in the world

There are many things I hope and pray from for the future

As the years pass by, there are many things I pray will change

I pray that R will blossom as he grows

But one thing I hope that remains the same

The eyes that can see the magic  in this child


For more fun with SOOC  and to meet more bloggers that share a slice of their life - maybe even participate yourself - visit Melody  here

Saturday, June 5, 2010

SOOC Saturday: The things R teaches me

I learn so much from R

One of these things is his focus  and enjoyment on what he is interested in

There is much to be said about social referencing ( indeed its a big one we are teaching now )

But a part of me loves his focus on his interests

( Indeed its a big one I am teaching myself.. how to enjoy life and things and experiences without people-pleasing and impressing  being my  primary purpose.

 For often this acute focus on the way I come across to people, is  my primary source of unhappiness.

Even when its not a source of unhappiness - its certainly is a skewed  and narrow filter through which to look at, to enjoy and live  life )

Here he is – sitting outside the Blue Willow Inn - engrossed in the book ( the scintillating tale of Barney's 12 days of Christmas ) that he must finish now- regardless of what is around him .


While I want him to pose for a cute mommy-and-me picture. I so want to ask him  again to come to me and look at the camera

But then,  I  suddenly realize that the memory I want to keep of this moment is not the pose for the camera

But of  the things that people like R and people like me can learn from one another

A way to enjoy life through people

And a way to enjoy life with your own interests

Please go here to enjoy melody's post and to meet other bloggers who share with you a slice of their life and participate in SOOC

Thursday, June 3, 2010

The Things that R is learning these days

Here are some things that we are doing with R these days

Expanding of themes and Pretend play

One interesting thing I am noting these days is how R expands everything he learns

Example- he used to love to make me play an imaginary violin – ( tune from Elmo’s Key-board-a-rama )

Now he has broadened that theme –

So he will point to a scrape on his hand and demand “Hurt play violin

Then I must move the scrape from side to side ( as though it were the strings of a violin)

or “Potty Seat play violin” or “Water play violin

I try to stretch the theme in another direction to another musical instrument but same object “ Water play piano “( clarinet, flute, drum and so on )

To further branch out, I also make this the theme of our alphabet game in the trampoline while jumping –

So I will say “ A for “... expectant pause  and R will reply “Accordion” ,

B for Banjo ,

C for clarinet,

D for drum and so on

( We make some exceptions for some we do not know and we cheat for those alphabets , like E for Elephant.

A few alphabets stand for R’s favorite things so there is an exception made for these as well – Example R for “Rudolph the Red Nose Reindeer” and S for “Santa Claus is coming to town” and “Y for “Yellow Submarine”. And of course “ M for mummy “)

It’s the same with all the Pretend play –

if he learns a general scene in the Dollhouse – Example mom climbed up the stairs and went into the kitchen

He will recreate the same theme with another playset – with Rocket and make the Little Einstens solemnly climb up the stairs of the rocket

The idea is that this will then lead to original themes

Pretend play is critical for abstract thinking which is one of the main gaps that can remain in Auties which is why DH and I  are very focused on it and one reason why our house looks like a toy store

Social Referencing

We are trying to teach R is to follow the gaze

( try this in your car on the highway – look on the side to the person riding the car on your side – invariably that person will look around to take a look at you – Neurotypical people reference socially in a matter of course. Auties ? Not so much )

I am trying to teach this to R – like in the library there are dolls on the ceiling

I ask R – “Find Elmo”

Then I look at Elmo and see if he will follow my gaze

Language

Coming painstakingly slow

Though what he has is logical –

the other day I poured water on him in the bathtub - as he moved away I asked  solicitously

“Warm?”

Hot” he replied

Scripts are not a perfect solution either

Example: if he wants candy we have taught him the script “Can I have a Blue Dum Dum Please?”
However if he wants to go to Toys R Us he will use the exact same scripts “Can I have a toys r us please

Its logical and meaningful but not fluid

Another example,  when I return from ATL at 5.30 pm on Tuesday, I find that R’s therapist is here: I slink around soundlessly( I know from past experience that if he sees me he will waste his therapy session in tears  and demand Mummy time every 2 minutes )

When the session ends R gasps with joy and does his happy dervish dance saying “ Mummy Mother Mama
( so he is expressing joy in a very typical fashion - but typical words needs to come too )

A charming thing he does these days when I say Good Bye to him he replies anxiously " hello miss mummy" as he does not want me to go
( again a logical expression but still not right )

(  beatles are a big favorite with R , and he watches their videos on You tube which is the reason for the Hello Goodbye motif)
You can see the theme in all these examples - he is communicating through words clearly, but still has such a long way to go

Joint Attention

He loves to show us all his hurts

DH teases me that he is a hypochondriac - but I wonder if its  less to do with self pity and more to do with the fact that he wants to express himself and this is one of the few ways he knows how to talk about

In fact this skill of joint attention where child shows you something and their pleasure is increased by you sharing in that pleasure is really great !

So he will say and sometimes write on the side of the bath tub things like

Arm Hurt



0 hurt ( 0 stands for his stomach as that is what he calls his navel owing to its shape )


I truly feel that one day R will be a great chatterbox

OT Things

To check the crossing over the midline – the other day while he was eating chair – I put some Shredded cheese ( he loves this ) in a plate on his left side

Interestingly I noticed that our OT was absolutely right and R switched hand dominance constantly

However he crossed over the midline - as in right hand crossing over to the left side to pick up the cheese

Episodic memory –

Another thing we are also trying is – help him understand his day – so while I am putting lotion on him after bath in the night – I ask

Me : Today in the morning we went to the park.. there we played with ……. ( I leave an expectant pause )

R Replies “ L and C”

Me: Then we came back home and played on the ……. ( expectant pause )

R replies .. Wii Fit

Episodic memory is critical becasue it is the starting point of what Greenspan would say are Level5 and Level 6 of thinking - grey area thinking - things like self reflection on emotion

So R at a later stage would need to think about his trip to the park at higher and higher levels

Then describe his emotion on that trip

Think about the memory from different perspectives - understand how he came across to C and L

Then eventually be able to reflect on his emotion  and correct course for the future
example

Medium Level thinking : I had a lot of fun because of  I love physical activity

Slightly higher level thinking  "I think C likes me because she tried to spend time with me at the park"

Highest level thinking  " I stayed too focused on the physical activities.. i should have spend more time socialising"
But it all has to start with episodic memory and practising thinking about it !

I am typing up this summary on my way back from Detroit – after a looooong day at work and all my co-workers have fallen asleep

But not me

I love this bit of any work trip

The bit before I get home

Anticipation is a lovely thing and a great source of joy for me .

One onerous thing that mums and dads  of auties realise at some point in time is just how much needs to be taught - when your child is younger you think in terms of speech
Of course the flip side - and the side that I choose to focus on - is how much potential there is in our kiddos

And if you treat developmental milestones with a  "what is next in my journey" perspective rather than a "he is 6 and still not doing .... " perspective - you have just as good a shot at happiness as anyone else !

Floortime Lite Mama

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